My name is Claire. I live in Cincinnati, OH.

I found out i have a disease called Cold Urticaria (CU or Cold Contact Urticaria.) I found out that I had it about 4 years after my symptoms started showing up. I first noticed my hives when i went swimming in a pool for the first time in years.

I got light headed, hives all over my body, and my body burned. I can’t eat ice cream, can’t drink cold drinks, i can’t even help my mom bring the milk in from the car because it’s to cold.

I have to stay away from anything cold and living in Cincinnati makes it pretty hard. There is one foundation for this disease and it has really helped me but we need to get the word out because every medication the doctors have put me on, so far, don’t work.

I’ve had this disease for about 16 years. I hate living in fear. Knowing that i could die just from walking in a building with air conditioning scares me. I’m only 18 and I don’t want to live in fear from day in and day out. We need help.

Do you have Cold Urticaria (CU or Cold Contact Urticaria)? Make sure to leave a comment to connect!

456 thoughts on “Looking for Other Patients with Cold Urticaria (Cold Contact Urticaria)”

  1. Jessica Chavez says:

    Hello Claire, I’m 20 years old and I’ve suffered from the same condition as you. Ever since I can remember I’ve hated the cold for that same reason. I can’t stand the itchiness. Nothing helps me but to just stay away from the cold and just being very covered up. I’ve gone through the humiliation of teachers, nurses, and friends laughing at me cause they would say “Okay it’s a joke, it’s impossible to be allergic to the cold.” Like constant laughing at me. It got pretty annoying and just nobody taking me serious. There was this one time I went outside and it was freezing, I was completely covered up, layers of clothing, I came back inside and my whole body was swollen, hot and itchy. It was frustrating and scary. You’re not alone.

  2. Vicki says:

    Hi Claire,

    My name is Vicki. I am 27 and live in Chicago. I was diagnosed with CU when I was about 3 years old. Please feel free to contact me as well. I have just recently started to do more research on CU. I have tried a couple of medications that did not work as well.

  3. Maureen Steele says:

    Hello! I have this too but when I finally got a doctor to not dismiss me as crazy she is refusing to diagnos it. She tells me is Raynaurds but I know it’s not. I’ve done the research. I have a daughter that doesn’t know how to swim at 5 years old because I can’t get into the pool with her. I get severe headaches from breathing cold air and my asthma goes crazy. It’s terrible. 🙁 you are not alone 🙁

  4. My 3 year old son has CU. He’s a mess at 65 degrees! We live in San Diego, but chilly mornings make a mess of him. He will also break out in the bath, swimming or just out playing!

  5. Maureen says:

    I live in Oceanside!

  6. Bri Groff says:

    Hi! As of right now I am laying in my bed with hives all over my legs and lower back, trying to warm up. I was just in the pool for a little bit, and I had to get out because I knew the hives were coming. I don’t think my CU is that severe, but I don’t know. I’ve only had it for almost a year now, and I’m 17 years old. Last October I was very sick, and my mom got me antibiotics, and I resulted in being allergic to the medicine, and broke out in hives all over, then the medicine I received for the allergy I ended up being allergic to. Hives were EVERYWHERE. Once I got better, and the hives vanished, every time I would come in contact with the cold I would break out! That’s how my Cold Urticaria started. It’s severely annoying, I could just put my arm on a table that isn’t necessarily “warm” and hives will appear and be extremely itchy. I don’t take any medicine for it, because nothing works, majority of the medications make me very tired. I don’t know what I should really do, besides try to stay out of the cold. I’m scared that one day my throat will close or something and something very serious will happen.

  7. Bob Mathews says:

    Hi Claire,
    Our son is almost 11 and was diagnosed with CU about 3 or 4 years ago. It is VERY frustrating for him to not be able to go outside for recess or to play in the snow. When it first started, it was only noticeable at temperatures of about 40 or lower. Now, it shows up when it’s as warm as 70 if there’s a breeze or it’s been rainy. We live in Loveland, so we’re close by. I hope someday he will outgrow this, and one doctor does seem hopeful of that happening. I wish you all the best as you deal with this along with us!

  8. Tara says:

    Claire, I was diagnosed with CU when I was 15 years old. I am now 42, it comes and goes and some years it is way worse than others…this year is one of those years. I haven’t found any great treatment for this, besides staying warm.

  9. Karyn says:

    Hi there. I also have CU. I have a lot of success eliminating wheat and dairy from my diet. My histamine levels have halved. Worth checking in to

  10. Carol says:

    Like Tara, I have been dealing with this for a long time. Like Jessica and Maureen, people have always called me crazy and that MAKES me crazy! This is a real medical condition. I have found many strategies that worked for me over the years, and I share them at a free blog called AllergicToCold .com Disclaimer: we have a store with the products I find most useful, but there is no pressure to purchase, my hope is to be helpful. Years and years of my life were spent learning to adapt my living to CU – I wish only to provide some time saving ideas for others. Claire, you are not alone and most definitely not crazy. =)

  11. Angela says:

    Hi. My name is Angie and I am 40 and have been living with cold urticaria for about 7 yrs. I didn’t even tell my doctor for the first 4-5 yrs and finally it was getting so bad I took a photo snd showed him. I thought he would think I was nuts when I said I noticed it happens every time I go outside when it is under 60 degrees. I guess I was lucky that he took one look at the photo and knew exactly what it was. The allergist quickly confirmed the diagnosis and my fear of being allergic to the cold for the past few years became the reality of a rare condition. I live in Michigan so am stuck inside at least half the year. The daily stuggle of having to explain this condition to people who think you are just being a dramatic wuss about winter stinks. I used to ski and enjoy a lot of winter outdoor activity, and now I can barely walk from my car into my job without antihistamines and an inhaler. The hives and difficulty breathing occur in less than 2 minutes when it is really cold. Glad to be able to vent yo someone who ginally gets it. I actually met a doctor I work with this year who also has it. Neither of us had ever met another person with the condition before.

  12. Craig says:

    I have had CU for as long as I can remember. My first severe reaction happened around age 7 in a cold swimming pool, and I went into anaphylactic shock. Since then, I have only had minor reactions, never getting any worse than some swelling and redness, but this was mostly due to avoiding dangerous situations. I am fortunate not to have an issue with cold drinks of ice cream or anythin glike that, but my skin is easily affected. I have had hives and swelling from temperatures as high as around 60 F. Nice to see I am not alone.

  13. Keleigh Bass says:

    I too live in Michigan can I have the doctors name please and thank you

  14. Piero says:

    Hi there, like many of you I’ve suffered from urticaria for many years, cold and hot temperature. I have seen different doctors in Italy and in Ireland and no solutions. Last thing I have tried is a food allergy test, the result was that I have many food intolerances to wheat, gluten, and many more. I went into a rigid diet for almost a year, things really improved. So food intolerance is when you can digest some kind of food properly and I was found intolerante to pretty much everything I had eaten in the few weeks previous the test. That made me think, maybe it’s the way I eat the problem so I changed my ways, I started chewing my food properly and not eat on a rush. Been doing this for a couple of weeks and It works better then any other diet I ever tried and I went back eating bread and all different types of foods with no problems.
    I hope my experience might help somebody

  15. Mandy carlozzi says:

    I have cold induced anaphylaxis and exercise induced anaphylaxis for about 20 years now. After swimming at our beach house I went into anaphylactic shock and was rescued by the lifeguard and transported to the hospital. I take 2 Zyrtec daily and 100 mg of doxepin daily but still have reactions. My allergist/doctor at mass general hospital says I have a severe form which includes reactions to exercise and more recently ice cream. I get dizzy, headaches, confused, my heart races and I vomit if I eat ice cream or am exposed to cold – especially swimming. Even though it can be limiting my attitude is that it is preventable ….most of the time. Do any of you notice fatigue?

  16. Rafael vargas says:

    I have cold urticaria. I read a book called the whole 30. Im going to try this diet to see if it helps get rid of this terrible disease. I almost died last year because i got into a lake just trying to enjoy my family camping trip. I will find a way

  17. Valerie says:

    I live in Chicago, Illinois and have a a beautiful 7 year old daughter that suffers from cold urticaria. She has been so unbelievable thru it all. She does not attend recess at school under 50 degrees, I limit her ice cream, she has had to stop going in pools because the wind would cause welts and she would cry. She is in a snow suit half the year and over this past winter she broke my heart. We were pulling up at home from school and she said “mommy I don’t even know how to make a snowman”. That day we did, at 6 she made her first snowman! Time for the summer months and hope for the best. Honesty it’s no easier with her other allergies and asthma but we make do.

  18. Valerie says:

    I am very interested in this. Have you started the diet?

  19. Valerie says:

    HI Vicki
    I live in Chicago as well and my 7 year old has CU. Living in Chicago with CU is so hard for people with CU. I always want spread awareness but I just don’t know where to start.

  20. Jill says:

    I also live in Chicago with CU. Isn’t this beautiful weather great? Except for the hives, my neighbors must think I’m crazy covered from head to toe. I have some food intolerance issues and have noticed a flare up of the CU with the birth of each of my children ( 1 & 3 ). Wondering if it is connected to hormones? I first got them in adolescence. Have you found a sympathetic Chicago doc?

  21. william says:

    Hi, I have CU too. Fortunately there is no winter weather in my area. The first break is when i’m 13, i was exposed to ac wind for a while before i feel the itch.
    I like to swim very much so having cu is very frustrating for me.
    From what i observe there is no fix number of the temperature i can handle. If the temperature drop slowly and my body can keep up the hive wont show up. But if the temperature suddenly drop and my body can’t keep up the cu will show up.
    I do some experiment while i swim. When i do warm up before i swim the cu shows very little to none. But when i don’t do warm up the hive can break up badly. Its in the same swimming pool and about the same temperature.
    So i think its about our body temperature. If it is still warm even the outside temperature is cold it will be okay.
    Thats why raining or swimming can make cu break up badly because when its cold, contact with water can make our body temperature drop very fast.
    Going out when the weather is wet/moist/dewy can be bad too, it helps to wear clothing with plastic~like material which cannot be penetrated by water.
    Drinking warm water before and after geting exposure to cold helps to reduce the hive too.
    Usually when the weather is cold the first one to get itchy is around hand and feet area and sometimes ear, especially if its not covered, because when exposed to cold, our body tend to focus the blood flow to our central body area to keep it warm, the area farther from the body get cold easier. So it helps to cover our hand, feet and ear to keep it warm.
    For anyone who like to swim, wearing full body wet suit helps a lot. Sorry if my english is not good. Hope it helps.

  22. william says:

    Hi valerie, its sad to see your love one suffers like that. I dont know what to do with the urticaria except to keep her body warm. But for the asthma maybe you want to check out about butheyko breathing excercise, if i remember it correctly there is a website called normalbreathing, there is free excercise there.

    I don’t have asthma but, i often got cold/flu before, there were no single month can pass without i got cold. The most unconfortable thing is when the nose is congested and i cant breath through my nose. The simple trick from that website solve the congested nose right away, they have trick for asthma too if i remember it correctly. Check out about the diet info there too. The information there helps me alot. Now its almost a year after my last cold. What i watch from my diet is mainly to avoid food with inflammatory effect and eat more anti inflamatory food. Avoid sugar as much as possible except from real fruit. Its hard at first, but its worth it.
    Hope it can help your daughter.

  23. bruce says:

    I have suffered ChronIic Urticaria for 5 years,I went to the hospital for test and biopsy and was given antihistamines, steroids, antibiotics medication. but when i came across Dr FRED ADU JUNIOR herbal cure which did not only cured me of HIVES but for 2 years now no sign of it coming back.so many people have been talking of Dr FRED ADU JUNIOR on the internet about his powerful herbal cure. My advice to you is to write via his email (drfredherbalcuringcenter@yahoo.com) so you can purchase his herbal cure for hives like i did and get your everlasting relief.

  24. Maria says:

    Been dealing with this for many years now and believe it has gotten worst in the last few years. Being exposed to AC for short period of times, swimming, let alone being exposed to chilly temperatures (walking from driveway to the house) causes me to break into extremely itchy hives. In the most recent times, cooling down after I break a sweat causes my skin to react as well. Would be curious to find out if anyone has tried the gluten free diet I have been reading about and if has really made a difference. Taking allergy pills everyday would really be my last resort and looking for ANY other solutions!!

  25. Libby says:

    Hi Claire, I’m 16 and I’ve had cold urticaria for 5 years now. I live in Minnesota, so it can be a little difficult to deal with my allergy. I usually develop hives depending on the temperature, and sometimes it gets hard to breathe, especially in cold water. I had no idea so many people have the same allergy as me! Guess I’m not alone. 🙂

    ~Libby

  26. Kristen says:

    I was diagnosed with cold urticaria earlier this year, and I’ve been finding it extremely frustrating. I was drinking cold water and I felt my throat beginning to swell. I thought nothing about it because it went away after about 15 minutes. It happened two more times and we figured it was raynauds. A couple of days later I got in a pool and my stomach and thighs had a burning rash on them. We read about cu, so we looked it up and did the ice cube test at home. Obviously, I got hives and we made an appointment with an allergist. I’m constantly congested, we think it’s from changing temps as I walk in and out. The allergist put me on two zyrtecs a day, singular, and nasonex twice daily. I hate having to take medication, so I looked up natural ways and decided to go gluten and dairy free. I’ve been doing this for about 3 months and have no difference. I just recently had a terrible reaction to a ceiling fan, and almost had to go to the hospital. I am thinking of going paleo and seeing if that works. I miss being able to swim and drink cold drinks. Nobody seems to take it seriously other than my family. I’m so sick of it. Does anyone have any diet or medication to recommend that worked for them?

  27. Kristen says:

    I’ve been on a gluten free diet for about 3 months, and so far nothing has changed. I do recommend trying it, though. If you are intolerant to gluten then it should make a difference.

  28. Breanna says:

    Hi, my name is Breanna.
    I also have Cold Urticaria. It has been extremely tough because it is so painful and knowing that the cold temperature can kill me is definitely scary. Especially considering that I live in Canada.
    What some of you may find interesting is that I actually have more than one
    Physical Urticaria.

    Cold urticaria: rewarming of skin after cooling/being cold, contact with cold temperatures

    Localized heat urticaria: contact with heat

    Adrenergic urticaria: emotional stress

    Cholinergic urticaria: rise in core temperature and other causes of sweating (exercise, hot baths, spicy food, and stress)

    Exercise-induced anaphylaxis: exercise

    Food and excercise-induced anaphylaxis: exercise following a heavy food load or eating certain foods

    Aquagenic urticaria: water contact at any temperature

    Symptomatic Dermographism: friction (stroking/rubbing/scratching) on the skin

    It’s definitely hard because my medication doesn’t work for all of them so my doctor gives me medication for my deadliest ones, and then of course I always have an EpiPen on me.

    I am 19 years old and have had this for 5 years now.

    I am glad I’ve found this because its great having other people like me talk to each other about this. As I’m sure you’ve all experienced; it is quite frustrating when everybody thinks you’re joking or treats it like it’s not a serious condition when it puts you through so much pain and you actually could die from it.

    I am currently looking into starting an organization for all the Physical Urticarias in order to support all of those living with it and to let them know that there are others out there. Living with severe/chronic Physical Urticarias is very hindering and takes away from your every day life.

    Help spread the word!

  29. Jalyn says:

    Hi, my name is Jalyn. I also have Cold Urticaria. I am from Monroe ,NC. I struggle with it mostly when I am in cold weather or in very cold areas. I attend college and during the winter and fall time is the worst having to walk 10 minutes to class bundled up like an Eskimo, with only my eyes out to see where I’m walking. Even the skin around my eyes break out. People tend to stare at me often or ask me if I’m hot. It’s really hard for me to enjoy life around that time because the pain is unbearable.

  30. Bri says:

    I have it! It all started two years ago. I had a normal cold, and my mom brought me home antibiotics to treat it. I was allergic to it, then the next medicine I got to treat the allergic reaction, I was allergic to. So, I broke out in hives all over. They didn’t go away for a month! So now, ever since, whenever I come into contact with something cold I break out in hives. And over the years, it HAS gotten worse instead of getting better. I used to never break out on my chest, stomach or neck. BUT NOW I DO. Just the other day it was a LITTLE chilly out, and just from sitting outside with a friend I broke out all over my legs and side. Two months ago I went to the beach and went into the water, WASNT THAT COLD AT ALL, I walked out with welts and hives ALL OVER MY BODY. And the weirdest part of all, the hives start coming out the worst once my body starts to warm up. I guess from going to cold to warm, it triggers hives? I dont know. Last winter it was negative degrees out and I was outside for only ten minutes, once I got inside and started warming up I felt VERY OFF & VERY weird. My body almost completely went into shock!!!

    🙁 I do not take anything for it. Only Benadryl when I have a really bad reaction…. I just try my best to stay out of the cold. But even putting my bare arm on a cold table, within a few minutes I’ll have welts and hives on my arm where the cold touched it. Insane!

  31. Stacy Giesler Rickert says:

    Hi, I’m happy to find this. I live in Cincinnati as well and my 22 month old son was recently diagnosed. Have you found any support or care in Cincinnati you would recommend?

  32. Maureen Steele says:

    there is a Facebook group for people or parents of children with CU. There are tons of people in there. Please search it! It’s called Cold Urticaria (cold allergy) Support Group

  33. Jorfan says:

    I have the allergy to. I’m 13 years old. Don’t let the cold take power of your life. I still ski and love the winter. Even it sucks cause people don’t believe u and u don’t get to do things. I love this btw

  34. Kelsey Yadav says:

    I have cold induced urticaria too! I was diagnosed at 14 and I am now 28. I grew up in North Dakota and unfortunately the only thing I have found that worked was moving to Arizona. I tried taking anti-histamines but they just made me really tired and didn’t really seem to work in North Dakota’s freezing temps. I left North Dakota when I was 20 years old and even though it was hard, it was the best decision I made. I’m not afraid to walk outside without my epi pen even in AZ ‘s ‘winter’ time. The worst that could happen is a little skin reaction but not full blown anaphylaxis. I’m actually surprised by how many people have commented on your post. I was beginning to think I was the only one 🙂

  35. Christina says:

    Hi, My name is Christina, I’m 27 years old, I live in Dallas, Tx and I also have cold urticaria. I developed it 2 years ago. Being in Texas I don’t have to deal with dangerously low temperature very often so I suppose I am lucky there. I’ve never gotten it on my neck/face and my throat has never swelled up, but I’ve gotten hives on pretty much every other inch of my body. Once it was really cold outside and I didn’t want to leave the house so I ordered a pizza. I opened the door and reached outside to take the pizza box and my hand immediately broke out in hives. What I’ve found that helps me the most(more than benadryl) is to have an electric blanket and as soon as I get back inside after being out in the cold strip down to my underwear and climb under the blanket turned on high to get my skin temperature warmed back up. It really sucks because I love being outdoors and I love winter time and this really limits my ability to enjoy it.

  36. Hello! says:

    Hello, my name is Alyssa. I’m 15 years old, I live in Columbus, Ohio and found out I had CU just early last year. I had caught pneumonia during the winter season of 2014 and they put me on a medicine that sort of “triggered” it. I would get hives just walking to the car with my mom when I had to go to the hospital. I remember telling my mom over and over for a few months that I was getting these itchy red bumps on all over my body that put me in excruciating pain and cause panic attacks, my middle school teachers ALWAYS had the windows open and I could never ask to move or close the windows because my teachers thought I was nuts for even SUGGESTING that I have this disease! I had to learn and borrow friends jackets throughout the days, I didn’t really tell anyone except for my family and teachers (who didn’t believe me one bit!). I had no clue what was wrong with me and my mother was playing it off like there was nothing wrong because she believed I was a hypochondriac. I got sick again and she took me to the doctors and after my check-up I mentioned that I get ACTUAL HIVES when it’s cold out, and I’m super sensitive to the cold! My doctor told me that I had a disease called ‘Cold Urticaria’ and explained it thouroghly to me and my mother, and she finally believed me and I got to yell “I told you so!” from the bottom of my lungs. To this day it still pains me, but has certainly gotten a lot easier. I think I’ve built a small tolerance to it from having to suffer the cold that could KILL me, any time and any place! Sadly though, I am homeschooled now, since I couldn’t BARE the pain any longer.

  37. Sue says:

    Hi my name is Sue. I also have cold urticaria. It first started when I was 12 years old. I am now 24. I used to never be able to go outside in the winter time without breaking out in hives and god forbid I go swimming in a lake. I have noticed that my reaction to the coldness have greatly improved; I haven’t broken out in 2 years . However whenever I am exposed to the cold air, I have flu like symptoms afterward. I still minimize my time out in the cold and avoid swimming in the lake due to fear. I want to say that I have grown out of my cold urticaria but I cannot say for sure. And I’m not really up for testing this statement either.

  38. Jacob Dickson says:

    Hey guys I’m Jacob I have had to deal with allergies my whole life from when I was born. When I was born I was allergic to milk, eggs, wheat, all nuts, all animals, all trees, pollen, grass, coco, she’ll fish, and fish. I was also born not breathing, and with other major problems. Now today my deadly to the touch allergies consist of milk, peanuts, and the cold. My swell up and eventually die allergies consist of all animals, grass, the cold, all trees, pollen, and some shell fish. Being exposed to temperatures below 60 degrees will result in death in 12 minutes unless I am in an allergic med or benidril which in that case it delays it by 5 minutes. When I’m exposed to the cold it makes all my other allergies get worse in the long run. When I went to the hospital in Portland it was a huge hospital (mercy hospital) when they heard I was allergic to the cold not one nurse or doctor has ever heard of it and thought I was being dramatic. When they tested it with an ice cube and I went into anafilatic Shock they were astonished, that’s why we need to raise awareness. The fact that doctors arnt taught about it isint good. I get teased and called a pussy at school because I can’t go outside for more than half the year. Kids think I fake allergic reactions to get out of things but I don’t. Kids tease me by pretending to spill milk on me. People don’t understand I’m not lactose and tolerant I’m deadly allergic like within 4 minutes of touching it I’m dead same goes for peanuts. I have had kids throw milk on me in a fight and me almost die. The kids obviously get suspension. Even though they knew it would kill me they don’t get exspelled or sent to Juvy for it, it should be considered attempted murder because that’s what it is. Contact me for more information if your interested.
    -Jacob Dickson
    jacobdickson21@yahoo.com

  39. Melanie Sanchez says:

    Hey guys, my name is Melanie. I also have Cold Urticaria. Living in New York makes it extremely hard for me to get anywhere during winter. I’ve had Cold Hives baisicly my hole life. I used to get severe hives when I was younger. It would happen on a daily basis for about 2 years, and then they disappeared. I didn’t get any hives for 10 years. I completely forgot about cold hives until yesterday. I walked to school and my hands and feet started to swell up, I got really scared and went to the hospital. On my way there I started to notice the hives. That’s when I knew what was going on. My doctor gave me some cream to put on the hives and yes, the cream does help, but I can’t believe there isn’t some sort of cure for this. Which shows that we the people need to raise awareness.

  40. Julie says:

    There are a couple support groups on Facebook that I’ve checked out for people who suffer with CU. I’ve had it nearly 20 years. Anyway it’s a great way to stay current on new meds and treatments since its so rare.

  41. Madeline DeZell says:

    Hey, I am Maddy and I also have cold urticaria. I found out when I was 5 years old and I went swimming in my kiddy pool. I am so happy to hear that I am not the only one with this allergy. I sometimes feel upset when people don’t believe me, I am so excited to hear your stories and talk to more people and educate people on this and hopefully finding a cure. Love you guys!!

  42. Madeline DeZell says:

    My allergy to cold was smaller when I was little but now I can’t even eat Popsicle’s and I can’t wash my hands in cold water. I feel so left out when my friends going swimming when the pool is cold and they laugh and shriek with joy a the chill of the water… I hate this allergy

  43. Mary Jordan says:

    My daughter has cold urticaria. She was diagnosed 3 years ago at the age of 14. She has taken steroids a few times per year to ease the pain. Nothing else seems to work when she has a flare up. Her main problems are swollen, itchy lips and droopy eyelids. Has anyone has success with any other treatment besides steroids? Also, her first sympton occurred soon after her third HPV vaccine. Has anyone made this connection or know if it’s related?

  44. Kyle says:

    I my name is Kyle , and I am 23 years old I have dealt with this condition since I was 16 . I am from BC , Canada where winters are COLD so during the winter months. It’s not my PEAK season .It all started out when I was on a jobsite one summer and on lunch break I was drinking a slurpee and my mouth / tounge swelled right up along with my hands from holding the cup. And and as the summer progressed I started swimming and experienced full body hives so went to a specialist and he told me I have Cold Urticaria ! So here I am right now December , 17 , 2015 . Sitting in my warm work truck because I was outside this morning and I had a severe reaction . It’s currently snowing here so it’s cold haha , I’m about to go to a drug mart and get Benadryl which I find helps a bit with the swelling I tend to carry an epi pen just in case ! I just wanted to say you are not alone. And it’s the the funnest thing in the world but the spring and summers are great ! If you ever need to chat about it feel free ! Keep safe and be aware that people may laugh and not beleive you but it is a real condition and it can be serious. Have a great day and take care .

  45. Adrienne Conde says:

    Hello, my daughter has Cold Urticaria. This is a big struggle for me to see her deal with this. She has other allergy issues and gets allergy shots weekly. As of today, it is 3 straight days with a rash all over from it being cold. I’m doing my best to keep her warm, but not even that is working. She does not let this take control of her having fun, well she knows when she has had enough. She just turned 11 and loves being outside, and is on her school cheer-leading squad. Out door cheering competitions are the worse especially when the fog rolls in. Summers, well she swims sometimes, but she gets out when it is unbearable.. Please shed some light.. Thanks, Adrienne. Fresno, Ca.

  46. Will says:

    Hey guys,
    Name is Will and I’m 21 from London, UK. For the past few months as the weather has got colder ive experienced what is almost definitely cold contact urticaria. So far I’ve been able to fend it off using common allergy antihistamines but it seems to be getting worse. Marijuana also helps me ignore the burning sensation I get, causing me to itch and making the hives worse.
    I’ll be visiting an allergist in the next few weeks if it doesn’t clear up but I’m almost certain it won’t due to the symptoms im getting when in contact with anything cold.

    Sorry I can’t be of more use or provide much solidarity due to the fact it’s been so little time but I just thought I’d give my two pence on the matter.

    Thanks guys.

  47. Lauren Mora says:

    Hello, im lauren and 15 year old. I began to see the hives about 1week ago. I get them on my thighs and all over my face. Its kinda annoying to have. 😒

  48. Lauren Mora says:

    Hello,im lauren and im 15 years old. I began to notice my hive about a week ago. I mostly get them around my thighs and face amd sometimes my arm.

  49. Desiree says:

    Hi everyone.
    I’ve had this for 17 years.

  50. Melissa Montague says:

    I first started getting hives from cold urticaria in 2000 at age 18. I don’t get as many hives now, but insane itching and I just had my first time on Christmas night of this year of tongue swelling, throat swelling and so.so much pain….. I had to take benedryl round the clock for three days:/
    I take zyrtec daily but I still itch like crazy, same with bendryl but benadryl is def.better. Nothing seems to help!!!!! I’m never drinking cold beverages/food again, no swimming, always protecting my skin from any air exposure…. even in my house right now it’s 65 degs (32 outside in NW Oregon) and any area that is not covered well starts itching like crazy:/

  51. Mary hudson says:

    I to have had cold urticaria since I was 13 iam now 75. Has anyone gone into remmision I have . Over the years sometime it really isn’t there ,but this year has been awful. The worse since I became aware of the disease. Let me know if anyone has remissions.

  52. Kathy McWhorter says:

    Mary, I also have remissions. I was first diagnosed in my 20s & can remember a couple of really bad years. I haven’t had any extreme reactions to cold in over 10 years – until a couple of weeks ago.
    I’ve had two doctors tell me that an extreme case is more likely to occur following a virus or infection. I did have a virus back in early December so perhaps that is what triggered my current outbreak.
    Since I was diagnosed many years ago, I have had a couple of extreme reactions (severe itchy hives when cold) but mostly just a few hives here & there – not lasting long.
    I am fortunate in that so far I have not had any throat or mouth swelling – in fact I practically live on ice water.
    My primary care physician prescribed Singular & I started taking it a couple of hours ago. I believe this is the same medicine that helped me back when I was diagnosed back in the 1990s.
    Good luck & let me know how you’re doing!

  53. Karen says:

    Hi everyone. I just found out I have cold urticaria. My doctor confirmed it a month ago. I first noticed it in May 2015, but suspect I’ve had it for longer. They say it’s not severe for me, but I haven’t ventured into cold enough temps to see how bad it gets.

  54. Me too says:

    Yes, I too have it. I am 56, when I was 8 I was swimming in a lake in California and passed out, my sister grabbed me off the bottom of the lake, totally freaked my parents out. I always thought everyone’s tongues swelled when they ate ice cream!,
    I live a normal life cold weather I am sure to bundle up to prevent episodes. People laugh at you when you try to explain how serious it can be. My last episode floating the river about 10 years ago I almost blacked out completely, realizing you don.t just outgrow this!!
    I was icing my neck recently with an ice back , not only hives appeared, but this time I literally have blisters. I am thinking as I age it is worse, may have to become a snowbird.you aren’t alone, most doctors have never heard of this. I do have chronic sinus infections, could be a weak ammunie system.

  55. Justin says:

    I have this condition and when I was a kid I used to get picked on because I didn’t like going out for recess. It started when I was 7 or 8 and teachers thought I was lying when I said I was allergic to the cold. Make matters worse I lived in Alaska and northern NY(snow belt of NY). I would like to see the prevalence of this condition because no one ever believes me. I’m 28 now and I found this website trying to explain to a family friend. I also have a hard time breathing when I transfer between hot and cold air and vice versa.

  56. KayCeeS says:

    I have had CU for 20 years, I was first diagnosed when I was 6 years old. I went into remission from 13-15, and it came back worse than ever when I was 15. I am now 26.

    I have a terrible fear that I will have a severe reaction when I am out with people who do not understand the severity of the condition and/or when 911 arrives they will not be able to help me.

    Over the weekend I had a very scary experience where I went unconscious due to a long period of cold exposure. I knew it was getting serious and called for 911, my friend did not understand the severity of the problem.

    By the time 911 came I was unconscious. Unfortunately, my friend was completely intoxicated and the paramedics did not believe that my condition was real. They thought I was just drunk (which I was not). They did not check my vitals upon finding me unconscious.

    Once we got into my friends house she dragged me in front of the space heater and I began to come to. When I came to the paramedic was standing over me asking questions about my condition. None of the 4 responders knew about CU, apparently. I had to ask the paramedics to google the condition so they understood the severity of the problem. After about 30 minutes of back and forth, and slowly starting to come to the paramedics finally took my BP (this should have been the first thing the did.)

    My BP was elevated, which is a good sign for those with CU after a bad reaction. Had my BP been low they should have proceeded with administering an EPI-Pen.

    I have been incredible fatigued the last few days, which happens after a bad reaction.

    I was so disappointed with the lack care, concern and knowledge of the first responders that I am beyond fearful that if this happens again I will be out of luck. This is only the 2nd reaction I have had where I have lost consciousness. It is terrifying.

    Moral of the story, if you have CU make sure you prepare your friends and family to properly respond to your condition. Wear a medical bracelet or carry identification that verifies your condition. Do not wait to call for help. CU is a serious condition and should not be take lightly.

  57. Isah Nasidi says:

    I have been experiencing this problem. I don’t have right to stay under fan for some minutes, drinking anything cold prove prohibited to me. unfortunately, I am living in Nigeria where most of our hospitals don’t have sound laboratory for test. my doctor is always telling me that it is allergic reaction, and the drugs given to me are only relieving the problem. I am 25 now and I am about to start work, my fear is how can I face my friends in office if they want on A/C or fan. Please can you help me with some advise or medicine. Thanks
    isah f

  58. Eve Graves says:

    Someone who has Cold Urticaria suggested contacting some blogs and doctors regarding a product that he recently purchased from me. Until now, I had not heard of this condition and I am really happy that I he led me to it, because I had this when I was younger and didn’t know what it was!

    The product is called Lungplus, and it is a mouthworn humidifier that I brought to the US a few years ago. I have exercise induced asthma, chilblains, and used to get hives from the cold, and it has changed my life.

    I’ll never really make money from it, my goal is to help people who have been unable to enjoy winter because of a condition.

    I have sole rights to sell this in the US and Canada and only do it online so I can keep costs down.

    The unit costs $50 and lasts forever. It can also be deducted as a medical expense on taxes.

    https://www.facebook.com/Lungplususa/?ref=hl

    http://lungplususa.com/

  59. Eve Graves says:

    Justin I just posted something about a product I have that helped someone with this condition. I think it would help you quite a bit!

  60. Dawn Doe says:

    Hello!
    I’ve been told by doctors that I have had an “allergy to cold” for about 3 years now. I just found this site, and plan on bringing this information about UC to my doctor next visit (to be fair, military doctors haven’t really encountered this much I’m such.) My condition hasn’t gotten to the point where it is life threatening, like passing out, but it has started spreading. It used to just be on my arms, but in reacent months it has moved to my legs and last week, my face. It doesn’t happen in the summer, and no one believes me when I say that I’m allergic to the cold. I have the familial version, which takes 24-48 hours to show up after cold exposure and lasts longer. It supposed to last a couple days, but ends up lasting two weeks unless I go to the doctor. I get a patch of hives the size of a quarter, which usually spread rapidly until whatever body part its on is covered in large patches of burning hives, which allergy pills, Benadryl, steroid ointments and all lotions just make it spread more. The only solution Ive found is a 6-day tapering dose prednisone pack. It usually clears up in about 4 days after that, but the burning relief immediately subsides.
    I was also not aware that getting a running nose and wheezing while exercising outside can also be symptoms of UC as well. Thank you so much for this page, and I hope my story has helped. Maybe prednisone is a good option for others.

  61. Rachael Lawrence says:

    My daughter has this,she has went into anaphylactic shock twice. Everyone we have tried to explain it to, thinks we are crazy. The doctors put her on a ton of zyrtec and she carries an epi pen. I had no idea there were so many people with this disorder,it is horrifying! What meds/precautions has everyone found that works best for them??

  62. Trish Dell says:

    I have had this condition for several years and my grandfather has it too. He now lives in FL and I am in WY where my husband was stationed with the AF. I break out for days at a time with rash and burning hives. Very painful. I can eat ice cream, but not frozen dots. Nothing with ice or cold water. Walking in the frozen food section or carrying a gallon of milk can trigger a reaction. Benadryl helps a little, but not for the duration of the breakout. It is very hard to explain to people that I am allergic to cold and what happens and why I have to cover up in the summer time in air conditioning. Usually when I tell people, they laugh and say they are too. Then I have to explain that for me, it is a real MEDICAL allergy.

  63. Anna Miller says:

    I’m a consumer advice health & wellness reporter at US News & World Report, where I’m working on a story about cold urticaria. I’d love to talk to someone with the condition who wants to share what it’s like to live with, how you cope, and anything else you want a general audience to know about cold urticaria. Please email me at amiller@usnews.com if you’re interested!

  64. Alexandra W says:

    It’s a relief to see that I am not the only one that struggles with this problem. I have had this reaction to cold temperatures since I was 9 years old. I remembering noticing hives on my hands for the first time when I was walking in from recess one day. I’m now 20, and it seems like my rashes/hives have only gotten worse in the past couple of years. It also seems like I am becoming more sensitive, in the sense that it used to have to be a really cold day, and now I can break out in hives whenever it’s even a little bit chilly outside. I don’t get reactions when eating or drinking cold foods though. I am finally getting tested for all types of diseases that can cause cold urticaria as a symptom. I have recently been cleared for all autoimmune diseases after having gone to a rheumatologist. Now, I have an appointment with an immunologist in a few weeks. Hopefully I can eventually figure out a treatment plan!

  65. K Dawn says:

    I have experienced Cold Urticaria since age 7. I am now 30. My symptoms are mild, with no swelling of the mouth or throat, but I dislike the sensation of drinking cold beverages (hurts my mouth). Swimming in cold water results in the most hives. I get hives predominantly on hands, feet, wrists, ankles, knees, elbows, and thighs.

    I find I am far more sensitive to the cold than I used to be. I live in a temperate climate and work outside year-round. I need to wear snowpants if it’s below 10 degrees Celsius or the outsides of my thighs break out in welts, which turn to open sores when my pants rub against them. Below -5, no gloves or mittens can keep my hands warm enough without the help of hot packs. I get rosacea on my face from temperature change from hot to cold or vice versa. I am almost always cold, particularly my hands, feet, and nose.

    On the plus side, it’s rare for me to overheat. I can withstand temperatures that render most people dizzy and lethargic -in long sleeves and pants- and work just as hard as usual. I will sometimes break out in a cold sweat, and after weeks of hot temperatures (no A/C. The shock of going between A/C and summer is too much so I avoid it) I am a bit worn down. But I will ALWAYs take hot over cold. Even in the summer, I get chilled in showers less than 55C.

    Office work has proven intolerable for me, as my hands need to be exposed to type and they break out in hives at normal office temperatures. I am much better off moving around outside, even at low temperatures.

    Fascinatingly, a dry low temperature (-10 – -20C) provokes less hives than a damp cold (20 – -10C).

  66. Kristina says:

    Hello to all of you here suffering from this annoying desease. I’m 34 and got my cold urticaria for my sweet 16 :/ …so I have this condition for 18 years now, and that’ s already to much for me. I was living in a cold climate for 5 years and was doing alright, after I moved to a warmer place I broke out in hives 6 months after I arrived here where I live now (mediterranean climate). I was 16 then as I said. No doctor could tell why this happened to me and nothing they gave me didn’t help, including the medicine you all mention in your cases, so I don’t take any at all till now. I have only external hives, so thank God I can eat icecream and drink cold drinks, but since I live in an area where inspite of a seaside we have cold nothern winds blowing our minds away on regular basis I don’t get much happier. Then again, an interresting thing happened when I got pregnant, no hives at all, cold weater or warm. I laughed like crazy when I noticed that and hoped it was finally over!..after the birth of my two children I was there again where I was in the beginning. It got even worse. I can’t go out to my car without breaking out, and that’s only 5 seconds away from the door.. sadly. To make this story shorter I connected this phenomena with hormons, which are ten times higher when you’re pregnant. Maybe the problem lyes in the Thyroid if I have written it right. I will turn to alternative solutions most definitely and let you know if there is any progress. Sadly you have to be your own doctor and do whatever it takes to ”survive”. Best wishes to everyone, I’ll stay in touch.

  67. Layla says:

    I realized i had cold urticaria when i was 10. I was swimming causally but when i come out i had red blotches.I was slightly scared but not that much has i was feeling fine.i kept on swimming even though getting the red blotches. i did try and stop swimming a bit but since Aus is such a hot place i couldn’t and i was a excellent racer also. Until one day i went swimming and i got massive hives all over me.I was completely freaking out(i was only 10.5/11 now). i sorta base our sirious the medical situation is on my mum hence she was a registered nurse and she was freaking a bit to. Funnily we put ice packs on me to stop the itchiness( not knowing it was what it is). it happened 2 more times then i stopped swimming completely. i also started getting big hands(and a very slight sensation of numbness) and hives on me when i went into cold air.

  68. Tina T says:

    Just found this site. I just found out 3 years ago at age 44. It seems to be getting worse. I get hives and welts that are extremely itching. I can’t eat ice cream. Can’t hold cups or glasses, cans and bottles have to have a “huggie”. AC can’t do. Blanket is needed for metal bleachers and chairs. I have to immediately get dressed after a bath or rashes will start appearing all over body. Extreme cold like we have been getting here in PA has started to affect my breathing this winter, first time was scaring, coughing and tightness in chest. During summer to be able to enjoy the river kayaking or tubing, I have to take an anti-histamine. As affected my life and now seriously considering moving south. Some friends don’t realize the severity until they see the reaction. Been good reading other comments. Thanks.

  69. Eve Graves says:

    Tina I had this as a teen and in my twenties. The Lung Plus will alleviate your breathing issues and the Warm Skin will help the rest. Email me if you are interested.

  70. Lucy Wilson says:

    Hi, I recently got diagnosed with CU early September 2015. The doctor didn’t believe me that I got itchy hives and swellings when I got cold. I’ve had this for about 3 years before being diagnosed and it has steadily got worse each winter after my first break out. I am on strong anti-histamines which I take every day but it means that I don’t have to worry about wrapping up warm. I’m 16 so I still go to school so it helps me live a normal-ish life and I finally got my friends and teachers to understand the condition. Before I got diagnosed everyone made fun of me and I tried not to go out anywhere. I hope it becomes a more recognised condition so we don’t have to be mocked and have to go through a painstaking process to get people to believe us because it is as serious as any other allergy.

  71. Vicki says:

    I was diagnosed with UC 3 years ago. I took Allegra everyday and was very careful not to eat or drink anything cold. I’ve been in remission for a year now and last night we were at a wake and stood outside in line for an hour waiting to get in the funeral home, standing in frigid temperatures. After awhile My hands started to turn red and itch so do the bottoms of my feet. I can’t believe this could be returning! Has anyone else experienced remission only to get it back? I spent 3 years in fear and don’t care to ever experience that again!

  72. Kathy McWhorter says:

    Yes! In fact over the 20 years or so I’ve had it I’ve been in remission more often than not. My doc told me it is more likely to happen after an illness – infection, virus, etc.

  73. Kristina says:

    Sadly, it happends to me all the time. Only during pregnancy I was lucky enough to rest a little from CU. I have it for 18 years now, know exactly what you’re going through. I don’t know anybody that got rid of this desease but still I wont ever stop looking for a solution. Take care and head up, it’s going to be ok sooner or later.

  74. Eve Graves says:

    There are a few people who have tried the Warm Skin and Lung plus and are having results. Let me know if you would like to try a sample.

  75. Trish Dell says:

    What is the Warm Skin? I’ve had UC for a number of years, but it got really bad when we got stationed here in WY. I can’t have ice in my drinks, but can drink cold stuff…except for cold water! Ice cream doesn’t bother me as long as I hold my bowl with a towel, but I can’t eat dippin’ dots which I love. Cannot go swimming. It’s windy here a lot, so winters are miserable. Luckily, my boss gives me the parking spot right by the door! If anyone can tell me about the Warm Skin, I’d like to know!

  76. Eve Graves says:

    Warmskin is a barrier you can apply to your sking prior to exposure to the cold. NFL teams use this on exposed skin and a few people with CU have had great success with it. I am not sure if they sell it in Wyoming, I sell it and others do too. Send me a private message if you would like to try a sample.

  77. Wendy Stalfire says:

    I have what has been diagnosed as Raynauds. Started just my hands (couldn’t carry the milk or ice cream etc, now I get something similar to brain freeze but in my chest from eating or drinking cold things. The cold redness spread to my arms from being in cold weather. I try to do swim therapy but it’s hard to find a pool warm enough where i dont get pain in my bones. I wad originally diagnosed with Lupus, about 27 years ago. that was changed to Sjogdrens Syndrome. April 2015, I started with new intense symptoms and did research and found Bechets. My doctors don’t all agree, but started me on Colchicine which helps with the joint pain.

    I have started getting rashes but not sure it’s related to cold.

  78. Eve Graves says:

    Do you get bumps or rashes on your fingers and toes by chance? I have Chilblains, which is basically a much more severe Raynauds…

  79. Daniel says:

    Ive had CU for over 15 years now I can’t really count back the days that I’ve had it. It’s been so long. My CU was mild just when I was exposed to anything cold I would swell up, but as soon as I put on something warm or went inside it would go away immediately. Recently I had a bad fever and my temp went up to 104. The usual affects of a fever. After my fever I noticed that my CU had no longer any pattern. It comes and goes as it pleases. I had it under control, but now it seems like I’m trying to understand it all over again. Its really frustrating when you can’t recognize the pattern. I’ve been taking benadryl but have to take it daily to get rid of This just happened and I’m not sure if it’s because of my fever that just accrued and my bodies immune system is down. I’m not sure what to do anymore. Can anyone help and give me some advice? Thank you

  80. Akshil says:

    Hi, i’m Akshil. I’ve this allergy for like last 10 years. I’ve tried all sort of medicines but none of them worked for me.! At present i’m taking homeopathic treatment. I really want to know whats the minimum temperature i can be in.? Because i’m going to canada after few months and i’ve heard its too cold there. It goes down to -10 C in winters. Is it okay for a cold urticaria patient.? Waiting for reply..:(

  81. Kristina says:

    Hello Akshil,
    What homeopathic treatmant are you taking and is it working? I want to try also. Concerning Canada, it is only ok if you’re all wrapped up in clothes..scarf, cap, gloves and so on..at least that’s the case with me. I’m allergic too, and go skiing once a year, but I can manage that only with extremly warm clothes. My face reacts too by the way, that’s the worst part of all.
    Take care, and safe trip to Canada

  82. Eve Graves says:

    Try Warm Skin that will help you .

  83. K Dawn says:

    I am Canadian with CU and work outside year-round in the equestrian industry. I am fine in cold weather with Hot Hands hand and foot warmers (I go through a case of each every winter), and an abundant supply of technical outdoor clothing. I won’t step foot outside below 10 degrees Celcius without windproof/waterproof insulated snowpants. I wear SmartWool socks year-round. I keep my face covered with a fleece neck warmer. Don’t skimp on your outdoor technical clothing, or try to cheat with bulky layers. I get most of my clothing from Mountain Equipment Co-op (technical clothing without brand name pricing) and Mark’s Work Wearhouse. Sport-specific equestrian gear (boots, coats, winter riding snowpants) I recommend Mountain Horse. Water-proof gloves/boots/coat are also vital. For non-equestrian I wear knee-high winter boots an a knee-length parka.

  84. Eve Graves says:

    Dawn you sound like me! I live in Duluth, MN and go through cases of hand, foot and toe heaters every winter! I also found Warm Skin and the lung plus which I share. I had CU as a teen and in my 20’s and now have other cold issues such as chilbains and more!

  85. Jayson Diggs says:

    I have cold urticaria also. It is really, really bad when temperatures get below 32 degrees. The instant the cold air hits me, I start breaking out in hives. If I don’t wear long Johns in the winter, I usually get hives on my legs just from walking to the car from my front door. The other day, I was eating a popsicle and I noticed that after a few minutes my lips and mouth were swollen. Then a week later, I was drinking a slushy drink from Sonic, and I thought I was going to die. It was like my entire body had a brain freeze – I couldn’t breathe and I started to feel light-headed. It was extremely scary. Only until doing some research today did I find out that cold urticaria can affect the onside of your body as well as the outside. It is no joke. When I know I’m going out in the cold, I layer up like you wouldn’t believe. Even in 45 degree weather, if it is windy I am wearing my thermals. My hands get exposed to cold easily so I always wear gloves when it is cold. I never go swimming and I always make sure the shower is nice and hot before I get in. I also close the vents in the car while it’s warming up in the morning because if the cold air blows in my face, it will break out in hives immediately.

  86. Jessie says:

    Hello,

    I just started to get hives outside in the cold and in the ice rink (my kids play hockey) this winter. I live in Minnesota in the Twin Cities area. I have yet to be diagnosed with CU but I’m pretty sure I have it. What kind of doctor should I see and how do they confirm that you have it? Does it progressively get worse? My symptoms are pretty mild compared to what you have all been writing. We also live on a lake and I’m a little worried about swimming in the lake now too. Any information would be greatly appreciated.

  87. Eve Graves says:

    If you live in MN, you can get Warm Skin locally, that will help you with the hives. I got them when I was in high school and college, then they went away. I live in Duluth and love the extreme cold and snow so I have found ways to deal with my other cold related issues.

  88. Lois says:

    I live in Boston for the last 11 years but raised in Hawaii for most of my life. I wasn’t diagnosed with CU until three years ago after my second son was two. My third born has a bunch of allergies that no one in my family has and am hoping not CU. I have difficulty with the outside cold but also the cool down after a workout. I can still drink iced drinks but holding it can cause me to break out. I’ve been taking Zyrtec, which helps the all-over-body break out; however, if it’s too cold (ac or not enough heat), I can still break out in hives head to toe. My allergist recommends then to take another Zyrtec. Haven’t been able to not use the medicine even in the hot days of summer…. I’m curious of the holistic medicines as I’d rather not take anything at all.

  89. Eve Graves says:

    You can try WarmSkin, which is a lotion barrier against the cold.

  90. Spencer says:

    Hi I am 20, from michigan and have been suffering from CU for over 8 years. First found out after a nice winter sled then my mom thinking it was a good idea to make me take a hot shower to clear those hives away. (Worst idea ever) I’ve tried these “one a day” medicines Claritin, Allegra, and Zyrtec. Being in college, playing a sport, and working it’s very hard to take benedryll even though I’m in pain, because it makes me so drowsy. Any other recommendations or remedies out there?

  91. Eve Graves says:

    What sport are you in? Do you have issues with breathing in the cold air also? WarmSkin will help you with the skin reactions to the cold and Lung Plus will warm your entire body. Send me a message if you would like a sample of Warm Skin.

  92. Jill says:

    I’ve lived with cu since I was 11 or so and am 38. It’s been really bad since I got pregnant with my first child 5 yrs ago. I can’t play at the park on nice days if it’s breezy – bumps all over my face. I have been looking into a low-histamine diet, has anyone had success with that? I am also looking into California. I live in Chicago.

  93. Noelah Marie says:

    Hi! I have cold urticaria. I just had the most life-threatening incident so far with this immune disorder yesterday while canyoneering. I did not expect to be reacting that way but ended up in an emergency situation of having generalized skin redness, shortness of breath, and an episode of possibly anaphylactic shock. I don’t know how to describe it but I was able to move but weakly and was able to talk. But I can only see pitch black even with my eyes open. I was really having a hard time breathing. I only recovered when my friends took me to a spot where there is sunlight. I regained full consciousness after 30 minutes. Wheeew!

  94. Eve Graves says:

    There is a product called Lung Plus that would be great to have with you just in case you get into a situation like that again. The unit will warm your lungs and humidify the air.

  95. Daniel says:

    I live in California and i have cu,
    It’s tolerable over here due to the amazing weather we have maybe in the winter is when i have the most issue

  96. Tyler Dooley says:

    Hi I’m Tyler,
    I have had CU for 17 years and I just got diagnosed with it today. The worst part is that I live in Alaska. Sometimes it is to cold for me to even go outside. Even if I wear warm clothes I get it. My allergist and her colleagues has heard of CU but have never seen it before and so I had 10 different doctors looking my reaction. My allergist prescribed me Zyrtec every day during the winter, October to March/April.

  97. Kristina says:

    Lucky you 🙂 I’m moving next year only half an hour from where I live now, hoping that it’ll be few degrees warmer, but California with I think constant 25 degrees Celsius sounds really like a dream..

  98. Eve Graves says:

    Tyler if you try a product called Warm Skin it will help, you apply it to your skin and it acts as a barrier. You can also try a Lungplus which is a mouth worn humidifier and heat exchanger that will warm your lungs and entire body.

  99. Sivakumar says:

    Hi my name is siva,I am having CU for the last 8 years.I live in India. Since the temperature here is very high most of times it is not a problem. But when I bike during rainy weather or cold weather hives start appearing.I am planning to do studies in US.will this be a problem for me?

  100. Shannon Deutsch says:

    Shannon from Crown Point, IN .I have always wondered why my skin was so sensitive, after 15 yrs of living with the hives, redness, and itching I finally found an answer, doctors never knew what was wrong with me, one day I was looking at an article on Facebook and came across rare diseases and conditions and saw an article of this lady who gets welts, hives and super itchy, I finally googled it and came across cold urticaria, I was in shock, I didn’t know something like this could be real, I always thought I just had super weird sensitive skin, now that I know there’s a name for it , it makes sense and makes it easier to treat. Is there anything else I can do? Any forum’s I can check out?

  101. I, too, have CU. it started spontaneously in 2012. It has worsened over time. My doctor did not believe me. I ended up diagnosing myself and then bringing in a cup of ice water to her office to prove it. After that, she prescribed me an Epi-pen, and I take Zyrtec when I will be exposed to cold temps. Some days seems to yield a stronger reaction than others. I live in Florida…but anything below 70 degrees will cause a reaction, as will eating ice cream or swimming. I am 41 yrs old. I have heard that gluten free can cure it…wondering if anyone has had experience with trying this? I was supposed to get an MRI with contrast once but they refused to use IV as they were afraid of possible consequence. I feel like I should wear a medical bracelet but I’m not certain it is both external and internal. People think I’m a hypochondriac or making this up. No one ever believes me, until they see the evidence. How can I determine if it is systemic (internal) as well as external? I also had Graves’ disease and thyroid storm about 13 years ago. I am now on synthroid daily after radioactive iodine in 2004. Wondering if thyroid affects condition? Thanks in advance for support and comments.

  102. Ross says:

    Hey Guys and Gals!
    Great information!
    My name is Ross, I have CU. I self-diagnosed after being laughed out of my MD’s office at 12yoa. I’m 35 now and have recently learned that 4x the dose of Allegra *almost completely* resolved the issue when I’m exposed to cold. I love to surf, swim in the ocean and the pacific coast of California is a nightmare for CU folks. For the first time in my life, I spent 2 hours without a wetsuit or hives in 63 degree water. I did have some mild redness (not itchy or swollen).
    Side effects of the Allegra overdose were mild or unnoticeable.
    Also, living in Phoenix AZ is ideal (no humidity, hot as hell).

  103. Kristina says:

    Hello Ross, interesting what you’re saying.. I have taken all kinds of medication and nothing helped so far, but it never crossed my mind to double or tripple the dose. I actually don’t like to take chemicals just to camouflage the condition. I want to find the reason I got this desease and make it go away forever. I must have done something wrong, because nobody in my family near or far had or has anything similar to that.

  104. daniel lopez says:

    Hey Ross. I’m a little confused, so you have to take 4x the dose everytime? Or Is this something you did once and now you get very little to no hives when exposed the cold?

  105. Alexis Smith says:

    Hi, I’m Alexis Smith and have been experiencing CU symptoms since I was just 12. I’m currently 22. I was from Ohio and I couldn’t handle the harsh winters so my family relocated to Georgia. The winters are warmer, but I still get hives when the temperatures get below 40 degrees Farenheit. I also react to extreme temperature changes (hot day, cold pool) with hives. I’m currently on Zyrtec, Bendaryl, Hydroxyzine, and Zantac to help manage my symptoms. When they become uncontrollable I usually treat with prednisone. I believe that my CU symptoms are mostly triggered from my base body temperature getting too low. I’m meeting with an endocrinologist in the fall to meet and run some tests to look into my theory. No one knows your body better than you do. I’m looking for answers and help, but reading all of the testimonials helped me in another way. I’m sorrowful that any of us has to live and experience these symptoms, but it is nice to have people understand and know what you’re going through. Most people just laugh when I say I’m allergic to the cold, so it’s nice to have a group that understands the pain and struggle that living with CU can cause. If anyone has suggestions for treatment options or coping mechanisms, I’d greatly appreciate any and all suggestions.

  106. Kristina says:

    Hello Alexis! I just read your comment and immedeately thought through your theory. I’m having CU for 20 years now and had time enough to analyse it too. I think that the main problem, or the trigger as you call it, lies in bad circulation in the first place. My body temperature is low too, with a low blood preassure. That together automaticly in my opinion leads to bad circulation. I experienced, that the more I warm up my body in the sun, before going for a swimm in a cold sea or pool, the longer I can stay in the water without breaking out in hives. Opposite of that, if I run straight into the water cold as I am, without warming up first (boosting up the circulation) my hives show immedeately. So the theory you have is not silly at all. I hope you beat your urticaria some day like I hope to beat mine too, and these little methods help me to avoid medications completely. Greetings from Croatia

  107. Renee S says:

    I am 48 and have suffered with this for over 20 years. It is a rarity that my hands do not have spots. I seem to start with hives on my hands and feet if the temperature is below 70F. I have been a stay at home mother but just started back to work. I am finding it very difficult to work in an environment with air conditioning. I come home every day with hives and it is somewhat painful as my body warms up again. Any suggestions for dressing nice in an office environment but staying warm?

  108. Sam says:

    I’ll be 21 in a few months and have had CU for about 6 years. I break out in any temperature below 75 degrees and find it any season hard to live in (especially in NJ where restaurants blast their AC’s.) I don’t have insurance so I’m not taking anything or being seen by a doctor. It’s too expensive and I really can’t afford it. Any advice on seeking affordable health care for something like CU?

  109. Shannon Leaper says:

    My daughter has Mixed Connective Tissue Disease. She has multiple autoimmune disease symptoms, Reynauds, Lupus, Scleraderma, Junior Rheumatoid Arthritis, and a new one they are working on. See a rheumatologist immediately. You probably have MCTD

  110. Melissa P Eckler says:

    I’ve always gotten itchy if it was cold outside and I was walking.. My thighs would itch. Didn’t think anything of it. About 10 years ago, I started noticing I’d get hives on my hands after swimming in a cold river. About 5 years ago, swimming in cold water started producing larger hives on my hands, arms and legs. A couple of weeks ago, I swam in a cold river on Vacation. I should have gotten out of the water as soon as I started shivering, but it was my daughter’s first time in the river and she was having fun. I wanted to stay in longer to let her enjoy herself. By the time I came out, my arms and legs were swollen and red. I began carrying her back to the cabin when all of a sudden she felt like she weighed a hundred pounds. I put her down so she could walk, but it still FELT like I was carrying her. I was out of breath and all of my muscles felt tight and sore. I made it to the porch and sat down. My vision started fading. Everything turned white. My husband was talking to me, telling me to take deep breaths, but his voice was fading. It sounded like he was a mile away. I believe I was experiencing anaphylaxis. I took deep breaths and within a few minutes my vision and hearing started to return. After that I just felt weak the rest of the day. I now know how serious cold uritcaria is. It seems to be getting worse the older I get. I never had a problem being in a cold room or eating/drinking cold things, and I hope it never comes to that. But I’m scared.

    This also got me thinking…. I suffered from DIC (disseminated intravascular coagulation) after “giving birth” to my daughter. I was in labor for 20 hours, pushed for 2, then had an emergency C-section. The DIC happened during the C-Section, and the doctors could not figure out what caused the DIC. I’m starting to wonder if it was UC related. I remember shivering and feeling extremely cold while they were strapping me to the table before the surgery. Could the histamines released into my blood have caused the DIC? I wonder!!

  111. Sarah says:

    hey all! some interesting stuff! I’ve actually had CU my whole life. my parent brought me in before I turned 2 and they thought I had slap cheek. I was fortunate enough to have a pediatrician that also had CU and the rest is history. I’m fortunate enough to live in San Diego so I’m constantly in warm temperature but I’m sensitive enough to break out just in air conditioning. I did get out of swim pe my freshman year when they made me take it at 730 am. I’d come out of the pool with hives on my face and I’d either have to skip school to go home and warm up or take benedryl that knocked me right out. I haven’t found anything besides staying warm that helps and I’ve never met anyone else (besides the dr when I was 2) that has it so it’s nice to know that there are others out there! it’s unfortunate to hear that some of you live in areas where you can’t escape the outbreak! I wish you all luck! come visit San Diego!!

  112. Becky Nelson says:

    I also discovered that Allegra controls my symptoms! When I take Allegra daily (the 24-hour OTC pill), after about a week the meds have built up in my system and I no longer get hives when I’m cold. I was able to go whitewater rafting this summer, with my feet in super cold snow-runoff water the whole time, and not break out. Once I stopped taking it, the hives came back.

  113. Rebecca Nelson says:

    Invest in leg warmers. They make a huge difference in keeping your legs and feet warm during the winter. I live in them from September to May here in Montana.

  114. Rebecca Nelson says:

    I’ve had CU for almost 30 years now (about 3/4 of my life). I react at 72 degress and below. I grew up in So. Cal. having to always carry a flannel shirt with me into the air conditioned buildings in the summer. Now I live in Montana and spend a good hour outside in the snow every day during the winter for my job. The first couple times reacting to cold temps were the worst because I didn’t know what was happening and therefore let myself get cold enough to develop anaphylaxis. Since then, I’ve learned my limits and what I need to do to stay warm – at least to protect my core from getting too cold. Good jackets, camis, leg warmers (try them!! They help SOOO much!), cute gloves without fingertips…. Figure out what works for you. For me, staying warm at the wrists and ankles (so the blood going back to my heart stays warm) makes a noticeable difference.

    Don’t live in fear. This condition is irritating and can be dangerous, but warming up relieves the symptoms (unlike some who react to food ingestion or bee stings – that’s internal and way more life-threatening). Always have warm clothes with you, even if it makes you feel silly to tote along a lightweight jacket during the summer. Know your limits. I didn’t let CU keep me out of water (the Pacific Ocean, lakes, rivers, pools…) – I just got out and warmed up when I started to get itchy, and I always had a friend or family member with me. The more body surface that gets hivey, the greater chance of a blood-pressure drop that could knock you out, so body awareness is really the key.

    I discovered (as someone mentioned above) that Allegra helps keep the hives away when I take it daily for at least a week. This summer I was able to white-water raft in cold snow-runoff water without getting hives because I’d been taking it. I even had me feet in the water the whole time. Once I stop taking Allegra, I get hives again.

    Hope you find a combination that works for you and that you’ll grow out of it, as some very lucky people do.

  115. Eve Graves says:

    Hey thanks for sharing..Warmskin will also help out, it’s kinda like vaseline or dermatone but works better and is like a lotion, NFL players use it and those with CU have also had great success…it’s much easier too! Lungplus will also keep you outside much longer as it warms your entire body!

  116. Emma says:

    I’ve only had CU for three or four years, but my reactions have increased in severity recently. My first incident was just hives on my hands from working the front door at a polling place on Election Day. But then in the past few months I’ve been unable to breathe the cold winter air while waiting for a bus, and in the past two weeks I’m finding that it feels like my throat is starting to close up whenever I have anything frozen like Italian ice or ice cream. I’ve had other allergies suddenly get worse as well, and it’s honestly really scary because I don’t have a solid idea of what’s safe for me anymore.

  117. Isabel says:

    I live in Montreal, Quebec in Canada and I seem to have developed CU after getting stung by a wasp. Symptoms started about 10 days after the sting, I started noticing tingly and itchy fingers when I would hold my iced coffee. Long story short, when I made the link that it was the cold, I started researching on internet. I still have trouble believing what is happening to me. I went jogging wearing shorts the other night for 20 min. and came home to see hives on my thighs and it was just a bit cool, maybe 60F… I am not sure what is going to happen to me in the winter when it will be more like 5F! I am sure some people would not even believe it if you tell them you are allergic to the cold, right? It sounds crazy…. until you are suffering from it yourself! 🙁

  118. Val Suera Dravecky says:

    My daughter who is now 8 suffers from CU. It is very frightening. She always has a sweater or blankets in the car with me. When we go to the grocery store she needs to put on a sweater when we are near the coolers and freezers. In school she has her sweater all the time and once it’s under 50 degrees she stays in from recess. She hasn’t been in a pool since we found out. In the winter it’s snowsuit time to go from the house to car than into school, the joys of living in Chicago. She misses out on so much, between CU, seasonal allergies,peanut allergies and asthma, and it breaks my heart for her. Luckily she is a very strong girl and deals with everything that has been thrown her way with a smile. I couldn’t be more proud of her.

  119. Kristina Cindric says:

    Exactly.. even after 19 years that I have it, people still can’t believe my words, neither their eyes when I tell them that I have CU. I would have less questions to answer if I just told them that I drank too much and broke out in hives for that reason. Sounds crazy , but nobody is ready to hear things about they just can’t accept.

  120. Rachael lawrence says:

    My daughter has a severe form of this and her only meds is 40 mg of Zyrtec a day, 20 in the morning and 20 at night. She carries and Eli pen and more allergy meds just invade. I hope this helps!

  121. Susie Gibbs says:

    Hi all , I have had CU for over 30 years and it was so annoying as I love water sports!! Do you all know that Mast cells cant keep on reacting. They deplete once you have had a massive reaction or constant reactions. Then they take 24 – 36 hours to build up chemicals again. So once you deplete them, if you deliberately get cold every 24 hours, you just get a little reaction and not a fearful one. This is helpful to know, so you can participate in cold water events, if you do the preplanning. This method isnt a cure sadly just assistance to be able to participate if you really wanted to.

  122. Kristina Cindric says:

    Interesting! I’ll try that, thanx.

  123. Mark says:

    Hi, I am a 45 year old living in Madrid, Spain and I have recently developed what is specifically called Acquired cold urticaria (ACU). It started in August 2016, which is the warmest month of the year in Spain. I was very confused to start with and I spent a lot of time trying to investigate, but not much is know on this particular allergy. However, I was told by another sufferer that they were asked in they had been ill with a virus or had been stung by an insect before the allergy began. Wow, I thought, I had received a particularly aggressive wasp sting just days before the allergy started, but had not associated it until it had been brought up. IS IT POSSIBLE THAT MY ALLERGY WAS CAUSED BY A WASP STING? From what I have been able to see just by googling, there seem to be several cases associating the alley to a sting, but no particular proven study or specific illness that can even be explained to a doctor. This makes it quite frustrating for me and thus I would like to find out more of these specific cases “Acquired cold urticaria (ACU) from bee or wasp sting”. My ACU is especially sensitive. As in most cases, toughing anything cold, or bathing in cold water will effect me, but it doesn’t have to be too cold, tap water at 22 degrees celsius is enough. Even air temperatures of 22 degrees is enough for me, so I can’t even do a 10 walk in springtime without getting the itchy rash.
    MY REACTION
    – It takes just a few seconds of exposure to the “cold” to cause a reaction.
    – The first symtoms appear in just 30 to 60 seconds.
    – The Ice cube test was severe after just 60 seconds contact with my skin.
    – Symptoms disappear after around 20-30 minutes.
    – Especially sensitive hands, feet, ears , nose (nostrils) and around the mouth, but basically anywhere that receive the cold stimulus.
    I am taking two different antihistamines daily, but with no difference to the condition. I am in the early stages, so still doing tests and seeing specialists, but in the meantime, I would love to hear back from anyone with this specific allergy “Acquired cold urticaria (ACU) from bee or wasp sting”.

  124. Brandi says:

    My daughter’s 12,and was diagnosed Feb of this year although she’s had it for 8 years. Her reactions only ever happened in the summer until this year. I’m not sure there’s any correlation, but she contacted Lyme disease last summer – I’m blaming that for the increase in severity. We live in Massachusetts, so it’s not easy to avoid cold temps here, either.

  125. Allison L. says:

    I think I might have Cold Urticaria, but I’m not entirely sure. What made me really question if I have it or not, was 2 days ago whenever I was in a car with the windows rolled down. The cold air was blowing in my face and on my arms, and whenever I arrived at home, my face was red and so were the exposed parts of my arms. There were little bumps on the parts of my arms that were open to the cold air, and there was a yellow/white color around my eyes, nose, and mouth, but the rest of my face was red. The bumps on my arms were itchy for maybe about 1 minute while I was in the car, but the itchiness went away. My ears started to burn whenever I entered my home (which usually happens whenever I’m out in the cold with my face a flushed red). I thought that it was strange, so I looked it up on Google. Then, to my horror, Cold Urticaria pops up. I got really frightened, thinking of how it would affect my life, but the symptoms aren’t serious at all (at least I don’t think they are). I am still able to eat ice cream and drink ice cold drinks without my throat swelling. I did the ice cube test, where I put an ice cube on my forearm for a few minutes, and there were bug-bite like bumps on the area surrounded by red. They didn’t itch, burn, etc. It was just there and went away after about 30 minutes. I also had another symptom a while ago, where I was holding a cold drink, and my thumb swelled up pretty bad, but I’m pretty sure it was before I went to Las Vegas (where I swam at a water park). Nothing happened after I came out of the water. No hives, no itching, no burning, nothing. So I’m curious if I have CU or not, and even if I do, I don’t think I have a severe or even, moderate case of it. I’m still worried though, because I have to swim at my school on Monday as apart of P.E.

  126. Allison L. says:

    It’s Allison, again. I did the ice cube test on my legs. (I put an ice cube in a Ziploc plastic bag on my legs for 2 minutes). Both of my legs were negative. So could it be possible I only have CU in my arms and face?

  127. Tyler Dooley says:

    I have had CU for about 16 years and I just got diagnosed with it about 5 months ago. I live in Anchorage, Alaska. When i first started getting hive from it, my school nurse would put Ice on it. My parents always thought that I got frostbite regularly. When I go to college people don’t understand why it’s 50 degrees and I have a winter coat and gloves on. I have never heard of CU until my diagnosis. I’ve started to notice that I shouldn’t eat or drink anything ice cold.

  128. Tiffany P says:

    I have cold urticaria as well and have had a few symptoms for years but only noticed it this past year. I started breaking out in hives on my hands when we’d get into the car. Once my body warmed up from being in a small car with 4 people I’d break out on the tops of my hands. I couldn’t figure out what it was so I did some research. After finding out about cold urticaria I went to see my allergist. She confirmed it and told me the reason I would break out in the car is because the minute my body started to warm up from being cold, it would react. It’s gotten quite worse since then. I can’t hold drinks that have been in the fridge. It’s extremely painful. Rain and cold nights suck. Thankfully I live in southern California in the inland empire where it’s usually warm, but we have a few cold months where it gets pretty cold and I have to bundle up from head to toe. I’ve noticed if it’s under 70 F I have to dress like it’s raining outside. Just getting a bit of a chill makes little red dots start to gotten on my hands and arms and sometimes my neck. I own leg warmers, fingerless gloves, and a very warm jacket. People call me crazy but they do not understand. Lol. I run cold as it is, being on the small side. I’ve heard about that lotion that people use to keep their skin earn and I’m looking into it for the winter months that are ahead. It’s raining here today so I’m wearing leggings under my jeans so my legs don’t start to sting.

  129. Allison L. says:

    I do think I still have it, but definitely not a severe case. I was still able to go swimming at school with only a little bit of redness in the chest area.

  130. Allison L. says:

    Whoops, didn’t mean to reply to your comment xD. I meant to reply to mine.

  131. DANIEL LOPEZ says:

    Hey Tyler, what helps me during winter season is 24 hour Allegra gel caps. They work miracles. It makes a big difference and I’m able to go outside in cold temperatures. Give it a try and you’ll see a big difference.

  132. Shellie Stewart says:

    Hi. i’m Shellie. I am 44 years old and yes, I have CU. I live in North Texas. The first time I ever had a break out of hives was when I was 15 years old. I jumped into a natural spring and the water was soooo cold. When I got out, my entire body was covered in hives. Everytime it happened after that, my mother would rush me to the doctor but by the time we got there, the hives were gone. lol I went to numerous doctors and dermatologists only to be told I was crazy basically and no one is allergic to the cold. It wasn’t until the internet came along that I realized I wasn’t alone. I’ve learned to avoid triggers the best I can. There have only been three times in the past 30 years that I had almost gone into shock. Sooo wish they would come up with a cure and I would love to know what causes this!

  133. 2xurtcaria says:

    Hi! I have developed chronic Urticaria twice so far. I believe they were both drug induced cases. The first I was in my early twenties and was bitten by a dog and received a tetanus shot and ciproflaxin. Immediately I broke in hives shortly after taking the medications and got hives when exposed to sunlight/heat/pressure. This lasted for 3+ years and gradually disappeared. The most recent was 2 years ago I had another viral illness (although the doctor was not certain if bacterial) I had high fever etc. I was prescribed bactrim and immediately started having reactions. I now have chronic urticaria to the cold. I can’t say for certain if it was the bite/illness or the drugs but something that happened on those days caused the chronic hives. I live up north and always prepare for my skin being exposed. I understand the limitations this puts on one’s life
    as I always have to think about what triggers them. I stopped asking doctors about this a long time ago because I usually get the typical” I’m not sure, maybe try this doctor” and “I don’t think it’s the medicine”. We know are bodies and when something changes that drastically it is life altering and it would be helpful if someone in the medical field had knowledge. I hope someday that someone will be able to treat and identify what causes this condition.

  134. Kristina Cindric says:

    I wish I could enjoy the outside air while it’s snowing without all these problems related to CU. Have it for almost 20 years now and getting tired of those boundaries. I don’t even enjoy summer like I used to because I’m craving for a day of winter in peace.

  135. Eve Graves says:

    HI,

    I had CU as a teen and in my 20s and it some how went away. I live in Duluth, MN and absolutely love the snow and extreme cold so I searched for solutions so I could play outside. I’ve shared these with some on this site and they have had great success, life changing. One of the things is called Warmskin and it acts as a natural barrier to the cold…it is a lotion, the same one the NFL players use on their arms. The other is called Lungplus, which I found and brought over from Sweden. http://lungplususa.com

    If you really want to play outside, these will help!
    Eve

  136. Macy says:

    I take allegra almost everyday and it does work for my CU!

  137. I have had cold induced urticaria for 25 years. I have a severe case where I need to carry a epipen. I get the hives anywhere and everywhere I am exposed to, including temperature up to 75 degrees. I also swell if I am touching something cold too long. It is limited so much in my life. I am 49 and have 4 children living in NJ. I was told it could have come from a virus..
    It is pretty awful…
    Thanks,
    Joanne from NJ

  138. chantelle mathot says:

    Hi
    My names chantelle, Im from australia and Im 15. I have cold induced urticaria. I’ve had it for as long as i can remember, but we never knew what it was till this year. I use to get it at school in early morning on my hands when it was cold, i still get it now. i would also get it very bad when swimming in cold water. I have exthma and asthma as well, so we always thought i was just allergic to something in the water. i used to always go in cold water and get those hives, i never thought it was severe until i went swimming in a really cold pool and started getting them very bad up-to my neck and on my face which it never ever reached before only went on my arms and legs. i had a warm shower to try to ease it but i felt as if i wasn’t in control of my body as if i was going to faint, i had trouble breathing my arms and legs felt as if i just sprinted non stop even though i hadn’t done any fitness at all, i physically felt as if my body was way too tired to move i had to sit down in the shower since i couldn’t stand i tried to yell for my family but they were at the back they couldn’t hear me. i just tried to stay conscious and wait it out. That was the first time it ever got to that point, i know now that i was having an anaphylactic shock. but it was truly terrifying. i find that Im more sensitive to the cold than other people like i get cold a lot easier and my hands and feet always seem to be cold. and the rest of my body will be fine. im pretty lucky tho, im not that highly allergic that i cant drink or eat cold things, I’ve somehow survived being in freezing cold water before when i was younger. i live in australia so its fairly warm here even tho in winter it can get freezing. im not really a water lover either which is good and i also don’t mind covering up a lot either, i endure heat very well. i was able to take photos of it once. i had fake tan on and it was coming through the patches the tan had come off, im not too sure how to post them on here but if anyone knows how to put pictures up on here and that would like a primary source of it that would be very helpful. so yea i guess thats kinda my story about being allergic to the cold. hope someone else can relate to it aswell. thank you

  139. chantelle mathot says:

    hopefully this only replies to my comment i went to the allergy professional she prescribed me with an epi-pen to only use if i get the hives all over my body.

  140. Kristina Cindric says:

    I can’t believe how many of us are out there and they still don’t know the reason for that. 20 years ago when I went to a dermatologist , he said to me that he had only heard of this condition but never seen it happen to somebody. Nowadays it’s not much different around here. I don’t know anybody that has CU here in Croatia and there are so many of you in America and some other parts of the Earth.

  141. Kristina Cindric says:

    Thanx Eve, I might try that eventually.

  142. Georgia says:

    Hi Im Georgia, i am 26 and I just recently had a vasovagal collapse from swimming in cold water (the same cold water thay about 100 other people on the beach swam in and had no problems). I stopped breathing and my sister resuscitated me. I had no idea what had happened, I just felt faint and then everything went white. The ambulance drivers and the hospital put it down to a number of things such as “stress and intense sunlight and swimming”. But I knew that a moderately sunny day at the beach after an exam shouldn’t make me almost die. But the more I thought about it the more I realised that I jad been having problems with going to the beach for the last 4 years and had been getting a rash from the water. I had just put it down to being allergic to something in the water. Because when I lived in Victoria (even colder water) I used to go swimming in the middle of winter and have no skin reaction at all. It wasn’t until I started researching it that I found out it can develop spontaneously in adulthood.
    Since then my reactions have been getting progressively worse and now any contact with cold things makes my skin burn hot.
    I feel sort of scared and alone in it because I went to the doctors and told them what I thought it was and they didn’t really acknowledge what was going on with me.
    Does anyone know anywhere in Queensland where I can be properly diagnosed and so that I might be able to get an epipen just in case I have a serious collapse again?

  143. Melissa says:

    That exact same thing happened to me and myprimary care doctor told me it was vasovagal syncope too. It wasn’t. I saw an allergist a week later and explained everything to her, and she said it was cardiac anaphylaxis. Go to an allergy specialist if you can. Have them do the ice cube test to confirm it.

  144. Susie says:

    Hi Georgia
    So sorry to read that you have CU too. I was about your age 30 years ago when it spontaneously arrived for me. Living in Australia or NZ life is about water sports, so it’s so devastating!
    The dermatologists should know about Cold Urticaria nowadays, surely!!!
    I’ve posted this before but just incase you missed it They may not know of a procedure ( not a cure) that helps you manage with it.
    Mast cells, once depleted take between 24-36 hours to replenish themselves. If you, under protection of allergy pills, intentionally have a planned reaction or several reactions over consecutive days in away that you can handle it (you can get quite good at this) then each day ( every 24 hours) go back into the water. You will then only have a small reaction as your mast cells haven’t been able to fully replenish themselves. Each day you are forcing them to react out what chemical they have made thus preventing a big build up. Get It? In this way you can participate again in confidence. I find I can handle the rash and some swelling but the massive full on reaction feels like you are going to die! Of course we all know you can in fact.
    Good luck for a cure in your life time!!!
    Cheers
    Susie
    Auckland

  145. Eve says:

    There is a product that can help…it’s called Warmskin and acts as a barrier to the cold. It is something you put on at least 30 minutes prior to exposure . It normally doesn’t come off in water unless you are scrubbing it off.

  146. Devon says:

    Hi..I’ve been living with Cold urticaria for about 8 years now and I live in the northern part of Ontario…where it’s cold pretty much all year around…I feel how you all feel and it sucks…my meditation I do daily helps me walk around during winter but only for short periods of time…I’m glad I found people like me…i hope you all someday find peace and are able to live without fear like I’ve been living….we can do it…I know we can.

  147. Eve Graves says:

    Hey if you want to have a better experience outside try Warmskin on your skin that is exposed, or where you get hives.

  148. Kristina Cindric says:

    It’s hard.. but We can do it! One day after another.. Best wishes to you and all the others in this group 🙂

  149. aks shah says:

    Hi, I have cold induced urticaria from last 8-10 years. I’ve tried and consulted pretty much everything and every type of doctors (allopathic, ayurvedic, homeapathic, naturopathic, tried quitting different foods, etc…..you name it). Nothing seems to cures this irritating shit. Next month due to some reasons, I’m moving to Canada where average temperature goes somewhere around -2 to -5 in winter. I easily get CU below 22’C 🙁 I’m very much scared of how will I be living my life in such a cold.! Due to this, I’ve experienced things like shock, fainting and choking which could’ve been turned into disaster if not treated at right time. I don’t want to get in any of these life threatening conditions again. There are lots and lots of other things I have to suffer from due to this. Over all these years it has made my social life a mess! But I do have to remain very cautious after this incidents. I’ve gone through all this comments but I have some questions.. Please help.

    1) What antihistamine seems to work best ? (allegra, zyrtec, benadryl, etc.) I’ve taken Zyrtec(10mg) a few times. It does the trick. But I was in temp. around 20C.
    2) And after taking one, for how much hours it works?
    3) Is it safe to take more than one a day?
    4) Is there anyone who have also experience swelling of throat if been in cold for long time? (mine do, and it’s one of the symtoms of CU) . There’s a mouth worn air humidifier “LungPlus”. Is there anyone who have actually used it? other than Eve Graves, because I know you sell it in US/Can. I’ll be happy to buy it from you but I need some genuine reviews.

    Please people, I need your help very badly.

    Thanks.

  150. aks shah says:

    Hi, I’m 21 now and I have cold induced urticaria from last 9-10 years. I have tried nearly everything and consulted every type of doctor( allopathic, homeopathic, naturopathy, ayurvedic, tried quitting different foods, etc..) even tried meditation and stuff.. but nothing seems to cure this irritating thing. Over all these years I have been through things like shock, fainting, choking, etc. It has made my social life such a mess. I easily get CU around 20’C. What I’m more worried about is.. next month due to some reason I’m moving to a place in Canada where temp. drops to -5 in winters. I very much worried about how will I be surviving there. 🙁 And I don’t want to pass through those life threatening conditions again. I want help from you all(Very Badly. 🙁
    I have some questions ..
    1) Which antihistamin works best with less side effects? ( allegra, zyrtec, benadryl, etc.) I have taken zyrtec-10mg a few times. but I’m not sure it’ll work in such low temperatures.
    2) Does any has experienced swelling of throat when exposed to cold weather for long times? (mine do. it’s one of the symptoms of CU.)
    3) Is it okay to take more than one antihistamins a day ?
    4) There’s a mouth worn humidifier called ‘lungsport’ it claims to help people having CU. Has anyone have used it? If so, please share your experience. (Eve graves, I know you sell it in CAN/US. but let other people share genuine reviews. I’ll be happy to buy it from you.

    Please help!
    Thanks

  151. Leslie Walcoff says:

    I was recently diagnosed as well and I have a question. One ice cube on my arm for 3 minutes will give me (us) a welt on my arm that lasts for hours. What happens if I get hurt. Normally you would apply an ice pack. What do we do?

  152. M. Gaddes says:

    I finally got a name to this. I usually just say I’m allergic to the cold. People don’t take me seriously. The first time was I was outside waiting to my mom pull up and the next things was I was burning and very itchy and all the suddent the itching stop… Then BAM. I was cover in welps and hives and they were red and itchy… I was crying and balling my eyes out saying I’m dying . so my family makes sure when winter rolls around, im covered head to toe (I have a ski-mask) to protect myself. I never met anyone who has the same disorder as me.

  153. Lois Molina says:

    Hi! I just visited my allergist last week and she recommended/introduced me to Xolair (omalizumab) to help me with my CU. It is an injection given every 4 weeks. I told her I wanted to do more research on it. Has anyone heard of it?

  154. Lois Molina says:

    By the way, I’ve had to take another Zyrtec within the 24 period because one wasn’t enough. It made me a bit sleepier since I usually take one before I go to bed.

  155. SP says:

    I have had a CU for 3 years now.. It gives me big red hives mainly on my face and then on my hands. I’m on prescription medication doxepin(oral). It makes me sleep for like 12-13 hours.

  156. Kristina Cindric says:

    I never met anyone in person too, but here as you can see, all of us suffer from the same allergy to cold.. Don’t worry, you wont die from this, it’s just awfully annoying and limiting..

  157. Kristina Cindric says:

    Apply gel instead. You can use an ice pack but for very, very short time.. 20-30 seconds, not more. Then wait a minute or two and repeat if needed. To me it works all right. If you warm up (jump or run for a minute or more) before using ice, I found out that the time spent outside or while using ice for recovery, can be evidently prolonged.

  158. Kristina Cindric says:

    Zyrtec or any other antihystaminic never helped me at all..

  159. Kristina Cindric says:

    I tried this method out and it sadly doesn’t work ;(

  160. Paul says:

    Hi Claire,

    My name is Paul from England UK, I too have CU and have had it now for over 10 years. I mainly react to a sudden drop in temperature, the wind blowing cold air in my face is usually the most embarrassing as my eyes form hives around them. My whole body is affected by the condition. If I am outside in the freezing cold things start to get serious, I break out in hives and start becoming dizzy as my body goes into shock, I can’t even work out at gym because my sweat acts as a natural coolant and becomes cold on my skin causing a reaction.
    I have 2 tips to share with people who suffer from this weird condition (unfortunately not a cure)
    1. Is to wear tight underclothing like under armour. This creates almost a second skin
    2. If you do reaction, try and have a hot shower or bath ASAP, for me this relives the itching and healed the hives disappear more quickly.
    Finally I would like to leave my email open to anyone that wants to share there experiences and tips on how they cope with CU. I’m every considering starting a WhatsApp Group so we can all help each other as it seems there as is only a small minority of us in the world with this condition. My personal email is iceton3000@hotmail.com. If anyone wishes to send me a message please feel free.

    Paul

  161. Paul says:

    Sorry about the grammar in my last post, I’m typing on my iPhone and autocorrect has gotten the better of me tonight.

  162. ARZ says:

    I am from Texas and despite the heat and humidity, CU still takes a toll on my everyday life. It’s so awesome that you are reaching out.

  163. Brooklynn Shepherd says:

    I am from Texas and I also have Cold Urticaria. I have been actively breaking out for almost 4 years now.

  164. Cherie says:

    I have had CU since I was 2 months old, I am now 48. Each year I get a new symptom, some more life threatening than the last. This year the symptom is if I get cool air in my left ear I end up with the worst pain, and migraine that lasts 6-7 hours. The scariest is that I forget who my family are, where I am etc. I have been told that it is like a mini stroke. I suffer with pain in my chest, dizzy, flu symptoms, migraines, hives, anaphylaxis, and I do not heal properly (I have had a broken foot for 2 1/2 years). None of the medications that have been given to me, have not worked. I did read an article that said there was a break through that says it is caused by a ” Genetic Mutation “. Can’t seem to get my doctor to check into it for me..

  165. Jessica says:

    Hi all. Very interesting on everyone’s experiences and how you all handle CU. I had it myself since 1999 and it progressed in getting worse. Right now I take 2 different allergy pills and take Xolair shots in each arm once a month.

  166. Destany .B. says:

    Hello,
    My name is destany and I have had it since I was born but my parents didn’t really notice it until I was 3 and my aunt has the same thing though her whole life was in a clinic getting poked by needles so they could further there studies on CU and let me tell you it’s horrible when you are in class or with your friends and an air conditioner blows on you and you try to keep a straight face but it hurts, I have known for quite a will but if you have CU genetically it’s more dangerous because it lasts longer instead of the chance of it going away and it’s stronger in your genes then other people.

  167. Debbie says:

    I experienced CU from early adolescence – around 1976 – to around age 35. Sum total of about 24 years. I have no idea what brought it on nor do I have a clue what caused it to subside. I did used to be very skinny, however, and since I grew older and put on weight the symptoms have subsided. Perhaps there’s a connection. My younger sister also suffers from it. Back when I was first diagnosed, the only medication available was 1st gen antihistamines like diphenhydramine, but the newer antihistamines don’t have the sedating effects of the 1st gen. Consider yourselves blessed! Lol

  168. Rebecca Nelson says:

    Cherie, Do you have the familial version of CU? It’s much more severe and had has different symptoms (flu-like and longer-lasting) than “standard” CU. If you haven’t looked into it, you should. I believe there’s lots of research going on with the familial version.

  169. H W says:

    I’ve had it for probably 5 years now, and I’ve noticed it just gets worse every year. Also not that helpful that I live in MI, where it gets terribly cold and snowy every winter. Its reassuring to know I’m not the only one, though. If anyone has any tips, it would be really helpful. I dont really do anything special to cope besides keeping myself away from cold as much as possible.

  170. Alison says:

    I’ve dealt with cold urticaria for almost 14 years now. It began on my hands as a mild itchy hive reaction whenever I’d wash my hands in cool or cold water, and I guess I had attributed it to post-pregnancy body changes. At this point in time, however, there is no part of my body that isn’t susceptible. My face used to not get them at all, but last winter it started hiving out like you wouldn’t believe so the condition has gotten progressively worse over time.

    Recently, I was diagnosed with an autoimmune thyroid disease, which may or may not be connected to it. If it is, then I suppose I’ve had thyroid issues for well over a decade, which is kind of unsettling. I live in northeast Ohio so I feel your pain. :/

    I bundle with extra layers, keep gloves in my coat pockets (and even a pair in my purse during other seasons, just in case my hands start to get cold), use scarves religiously, and basically try to protect myself as much as possible. Steering wheel cover in my car, extra coat and blanket in the trunk, that kind of thing.

    It’s funny though because you’d think that winter would be the worst, but for me, the warmer months are the hardest because you normally dress for the weather. When it’s 90 degrees outside but 65 degrees in an air conditioned building, it absolutely wreaks havoc on your body. I rarely wear shorts even on the hottest days, unless I’m staying home where I’m in complete control over my surroundings, because I can’t afford to get cold.

    Worst superpower ever. I give it a 1 out of 10.

  171. Guys you have no idea how encouraging this is. Sitting in my car crying rn. I have just contracted this disease this winter, and I was blessed to have Google because I was able to self diagnose within a couple weeks. My doctor has only confirmed what I already knew, and all he could tell me was to continue taking benydral when I started to break out in hives. I live in Texas so I am fortunate to not have to deal with severe cold temperatures, but I constantly worry about what is going to happen in the next few years, and if it is a sign of deeper autoimmune issues.

  172. Alison says:

    You might want to bring it up with your doctor. I never considered an autoimmune issue before a few weeks ago, and I kind of found it by accident when I was googling autoimmune thyroid disease. (I actually have an appointment with my primary physician on Thursday and I plan to ask her about it then. Not sure what it will do, really, it’s not curable anyway but the disease is manageable and maybe that will be enough to ease the symptoms of the urticaria somewhat.)

  173. Let me know what your doctor says!! I say mine like a month ago, but may go back for a referral to an endocrinologist

  174. M. says:

    Mine came on suddenly, and got steadily worse. I was formally diagnosed 3 years ago. A prescribed course of Cetirizine HCI 10mg and Ranitidine 150mg taken together 2x day has helped control symptoms dramatically (over the counter as Zantac- generally for heartburn-and Zyertec). I also take flonase for other allergies. I still can’t be out in the cold for long periods, but shoveling the driveway or eating ice cream no longer make me feel like I’m taking my life in my hands. I carry with me earmuffs and a light weight balaclava once temps go below 40. I generally always have a scarf with me. If I have to sit on the sidewalk or the ground I can fold it underneath, which helps remove me from the cold- I can also use it as a barrier between myself and a cold glass, or wrap it around me in case of wind or rain. I’ve turned necessity into a bit of a fashion statement and I’m known now for my collection of pretty scarves.

  175. Eve Graves says:

    One thing I do is wear those mini gloves from the dollar store…I just cut the very tips off…I wear those all winter. Warmskin lotion will help as will a Lungplus…

  176. Hadleigh Fain says:

    Hi everyone I’m Hadleigh and I’ve had CU for about five or six years now. I am 15 years old and I am looking for some people to talk to for support or just new friends because alot of people don’t believe or understand what we all go through. I live in Amherst Ohio and please if anyone is looking for support or just to talk email me please, good luck to all of you who are dealing with cold weather like I am right now:)

  177. Alison says:

    Well, she said it isn’t related to my thyroid issue (Hashimoto’s) but she did say that once you have one autoimmune disease, you’re more susceptible to others. Which means there may have been something else already going on before I even developed Hashimoto’s (no way to tell how long I’ve actually had it, but my thyroid is greatly enlarged). She’s looking into some things and will get back to me – I guess there’s a test for one thing in particular but it’s expensive, and she wants to do some research before deciding our next steps. She said it’s definitely a significant thing, though, so I’m glad I told her about it.

  178. Patricia Simpson says:

    Hi guys,
    I was researching this because I’m dealt with CU for the past 6 years. I live in SoCal, but my breaking point is between 60 and 65 degrees. I am going to Chicago in January and am really scared of that trip.
    I know exactly what brought on this disease for me. My son passed on to me Parvo B19, an otherwise mild childhood virus (a lot of the time, no one will notice a child has it) that can be a lot more violent for adults. I had a really hard time with this virus and contracted CU subsequently. Recently things seem to get a little worse. My mouth broke out yesterday after eating a delicious apple that came out of the fridge. That was a first. Usually, iced drinks or ice cream would do that but not refrigerated food.
    I will be on fexofenadine for my trip and will make sure to have my benadryl on hand, but I’m still pretty nervous. On the bright side, I have a friend who had UC for years and she is free from it now, living in snowy Canada and doing just fine. That gives me hope.
    Patricia

  179. Patricia Simpson says:

    Alison, I’m the same way. Here in SoCal the problem seasons are the fall and spring. That’s when I get caught in short sleeves with a cool breeze and start hiving away. People laugh at me in the winter time because I bundle myself up so much and it does look quite ridiculous in San Diego, but hey, I got to do what I got to do. I’ve even been wearing a snow suit on occasion (wet and cold conditions – the worse combo).

  180. JW says:

    My 12 year old son was diagnosed with it last year- but in hindsight he has had it for 4-5 years. We live in an winter sport area. It has changed or behavior for sure. We have tried lots of things but what has helped the most is accupuncture. It has at least changed his hives from large white embarrassing bumps to smaller red bumps that are less noticeable. My son also gets stomach aches from the allergic reactions and the accupuncture has also helped that.

  181. Cathy O says:

    Hi, I too suffered from what I think now is CU. I lived in Montana and when I was about 7, was waiting for the bus to school and was exposed to 15 to 20 below temperatures for about 45 mins. Even though I was bundled up in several layers of clothing, a couple of hours later I was COVERED with hives. So it would appear that I only got it when I was exposed to extreme cold for long periods. I don’t have the cold water, ice cream or air conditioning problem however. I made sure it never happened again. Now, flash forward to present day and I have a different auto immune disease (psoriasis) and I take Humira for it and that takes care of that. I’m wondering if people with CU are more likely to have other auto immune diseases and also if Humira works for psoriasis, RA and other Auto problems maybe it could work for CU. Maybe? Have they even tried it?

  182. Rebecca says:

    Hello! I think I may have this as well. I have had redness, swelling and itching and a few random hives when exposed to cold throughout my life. In once instance, while hiking ski slopes with a friend, I got really stiff and had to stop walking. Then she noticed my face was swollen. We took off my coat and i was itching and swollen all over and had random hives (not as bad as your pic). I have had some stand-out instances also. It seems to come on when I am in the real deep cold for more than say, 10 minutes. For instance, I just tried doing the ice cube test for 5 minutes. I have tingling and burning but no itchiness or hives. I really feel it’s only when I am exposed for longer. It also appears in weird ways. For instance, once I took my kids out in the snow. I was bundled up. I only walked around int he snow. Both legs were equally covered but when I went back in my house and warmed up only one leg swelled up and got red itchy hives on it. WEIRD. I live in Pennsylvania so it’s tough to avoid the cold. I have been wanting to move South for years and maybe this will be a really good excuse to finally do that. I hate the cold anyway.

  183. Bret says:

    Hey guys, I’ve had CU on and off for my whole life. When I was little I used to break out on my face and my hands and feet would swell real bad. It went away when I was in high school and reappeared my Freshman year of college (2002). It went away until the winter of ’10 and was gone until yesterday.

    Has anyone had it come and go on a winter to winter basis? I’m wondering if it is something I am taking medicine wise (as I have been sick with a sinus infection this week) that has triggered it once again. There seems to be a trigger, I just can’t find out what.

    Thanks guys, this thread is awesome!

  184. Patricia Simpson says:

    Same here, 10 minutes is about the length of time for reaction to be complete. Humidity might speed things up or aggravate the reaction though. Maybe that’s what happened with your leg.
    FYI, I’m pretty far south (San Diego, CA), but CU is still an issue here, but not as bad.

  185. That’s actually really interesting. mine came on this winter, around the times I was on antibiotics for two different infections. Could be considered!

  186. I have heard other people hypotheses that it can be triggered by underlying infections. Mine came on this winter, around the times I was battling a yeast and sinus infection, and taking antibiotics for both!

  187. Rebecca says:

    Sorry to hear that living in the South doesn’t make you immune.

  188. Rebecca says:

    That is interesting. I wasn’t on antibiotics when this happened. I actually avoid them as much as possible. As far as another infection, I am prone to sinus infections so that is a possibility.

  189. Rebecca says:

    wow that’s interesting…another commenter, under my original post said that she got it when she was also fighting a sinus infection and a yeast infection. I am prone to sinus infections so maybe there is a connection. Mine is intermitten as well…doesn’t happen every time i’m exposed…just when i am for longer periods and maybe, when i’ve had a sinus infection. That is something i’ll take note of in the future.

  190. Patricia Simpson says:

    Probably when your immune system is down or busy fighting something else. It seems auto immune deficiencies are a recurring theme with CU. I also know that as a woman, my sensitivity changes depending on where my cycle is at….

  191. Eve Graves says:

    I had it in high school and college, then it went away…

  192. I’ve noticed the cycle thing too. This month I’ve started taking into account how bad my reactions are at different times of the month to find a pattern!

  193. Amanda says:

    I have not been officially diagnosed with it, but my doctor is sending me to another doctor to confirm. I have had this since I can remember but they thought I was allergic to grass. I live in Michigan so it’s very hard to stay away from the cold. When I do break out, welts all over my face from the top of my eyebrows to usually the bottom of my chin. (Depending how long I’m in the cold for) I have found that this winter, when I use the cabin cozy brand hats, I don’t break out as bad. I wear the hats a little lower than I probably should, but it gets the job done.

  194. Jennifer Winans says:

    We have bought my son various Beardo brand hats. They help to cover most of his face.

  195. Kenzie E says:

    Hi, I just found out that I have this too. I went to two doctors to make sure they had it right because i had never heard of it before. So far they’ve put me on meds and given me an epipen for it but I’ve found it really hard to explain it to my friends without them thinking I’m joking. I’m 16 so pretty much everyone I know thinks that I’m just trying to be funny when I say I’m allergic to the cold. Does anybody have tips on how to properly explain it to someone else?

  196. Jeff says:

    I’ve had this allergy for about 30 years and it is tough to love with sometimes. Keep your head up a d move to a warmer climate. I promise it will be worth it.

  197. Moranda Conrady says:

    I was diagnosed with severe primary acquired cold urticaria when I was 2 years old. I tried meds for it when I was 15. They worked for about a week then I got used to them. We doubled the dosage. Same thing happened. We tripled it, my body had so hard of a crash from them that I passed out while I was walking into church and cracked my head open. I live right outside Louisville so it’s not warm here all the time either. I’ll walk in from parking my car and my teachers will ask me if I’m high because my eyes will be red from the cold. I’m almost 18 and I can’t find a way to control it. It’s awful getting strange looks from people when I walk in a building and my whole body is covered in hives. I haven’t been able to swim in a pool for years because I’ll go into shock. I just want a cure or a coping method for it.

  198. Patricia Simpson says:

    I’m afraid it doesn’t matter if you are 16 or 43. I usually avoid bringing it up at all, but when I do, the most common answer I get is
    “Haha, I’m allergic to cold too. I hate it!” Now I only bring it up when it’s relevant as in someone asking me why I won’t go to the beach or the pool or why I cover my face when it’s not even blizzard conditions. I start by telling them what would happen to me if I didn’t (breakout, redness, discomfort, shock) and then tell them the reason (CU) and tell them it’s ok that they have never heard of it because it’s very rare. There’s still disbelief but at least then you can tell them to look it up. By approaching the conversation from symptoms to reason instead of vis versa, that cuts down the jokes or dismissals. It’s a bit more dramatic, but it gets the point across. People are generally very curious and understanding after that.

  199. Monica says:

    Hi Claire (and the others who have posted) — My name is Monica and my 17-year-old son has had CU for about 7 years. (We think — honestly it took us about 4 years to connect the dots because he has so many other allergies.) Looking back on his health records I believe there was a connection with his getting allergy shots and the onset of CU. (I’ve read that many people develop symptoms following an extreme illness, medications, or insect bites.) It has been a tough journey as he’s developed some other allergic conditions since then. My son is on quite a few antihistamines, but I just read about a woman in Australia who is taking antimalarial medication with some success — I can’t wait to ask my son’s allergist at our next appointment if this is a possible treatment for him (there are some not-so-nice side effects tho…). Good luck — and pay attention to your symptoms. My son does not experience this (yet) — but some people even experience symptoms while eating or drinking cold foods. I urge you all to get Epi-Pens — and know the symptoms of shock. Our allergist instructed us to use an Epi Pen if 2 or more “body systems” were showing reactions (i.e., respiratory, gastro, skin are all systems), because that can be overwhelming for the body. Some people will experience vomiting or diarrhea as a symptom and not realize that those can be allergic symptoms. Stay safe and warm!

  200. Trish says:

    I get the “haha! Me too!” I have to explain that I am really MEDICALLY allergic to cold…like it’s in my medical records. I live in Wyoming, so it’s cold here 6-7 months out of the year…and no, I’m not moving. I keep a fleece at my desk all year round and my work “brothers” make sure and keep it warm in here for me. I park right next to the front door in the winter time.

  201. Eve Graves says:

    Have you tried Warm Skin or a Lungplus? Both of those have helped others.

  202. Eve Graves says:

    I had it in hs too…at that time my allergist just said, “You are allergic to the cold, don’t get thrown into cold water or you will go into shock”…that was it…mine eventually subsided…I just told people I was allergic to the cold and they looked at me like I was nuts! If you try the Lungplus and Warmskin those will both help you.

  203. Eve Graves says:

    If you use Warm Skin and Lungplus, it will help you avoid medications and keep symptoms away…

  204. Kathy McWhorter says:

    Hi, I was diagnosed with what my doctor called “cold-induced cholinergic urticaria” when I was in my early 30s.

    My doctor told me that itching & hives were most likely to occur following a virus or illness when my immune system was down. He said that a combination of an elevated core body temperature (caused by stress, hormones, exercise, etc) combined with cold temperatures were the problem. He put me on an asthma medication (I forget the name – that was over 20 years ago) for several months & my symptoms eventually subsided.

    My symptoms have been somewhat sporadic since then – some cold seasons I got hives & others I had absolutely no symptoms. Once the symptoms started, however, they lasted for months.

    Last winter my symptoms came on stronger than ever & medications helped very little. I felt that something more was at play. On a hunch, I decided to eliminate aspartame from my diet. So far, nearly a year later, the hives have not returned. Coincidence? I have no idea but I’m hoping that, at the very least, giving up aspartame has lessened my symptoms.

    I belong to a cold urticaria group on Facebook & a woman there stopped taking aspirin & her hives went away.

    This world of cold urticaria is a complex one & I hope that each one of us finds a way to lessen our symptoms.

  205. Misbah Ibrahim says:

    Hi! I have been suffering from cold urticaria for about 4 years. Hives would form all over my body just by getting in contact with cold air or water, although i don’t have a problem with eating cold stuff. Mainly i would get hives on arms, legs and back. After some time when my body would get back to its normal temperature they would disappear. The dermatologists that i consulted said that there’s not much medication available yet for this rare condition, but yea he prescribed me this tablet ‘zyrtec’ and it really helped, having one in the morning would help me go on with the day without getting any hives. But i try not to use it very often, for i fear my body would totally get used to it, so i would only use it when i have to go out for a little more time. While at home i would just try to stay warm. Its also very hard to explain to someone else that i’m allergic to cold! people would at first think that i’m tryna be funny and then you have to explain them all.

  206. Misbah Ibrahim says:

    Hi! I’m 18 years old and i have been suffering from cold urticaria for about 4 years. Hives would form all over my body just by getting in contact with cold air or water, although i don’t have a problem with eating cold stuff. Mainly i would get hives on arms, legs and back. After some time when my body would get back to its normal temperature they would disappear. The dermatologists that i consulted said that there’s not much medication available yet for this rare condition, but yea he prescribed me this tablet ‘zyrtec’ and it really helped, having one in the morning would help me go on with the day without getting any hives. But i try not to use it very often, for i fear my body would totally get used to it, so i would only use it when i have to go out for a little more time. While at home i would just try to stay warm. Its also very hard to explain to someone else that i’m allergic to cold! people would at first think that i’m tryna be funny and then you have to explain them all.

  207. Paul says:

    Haha it’s funny you say that people don’t believe you when you say your allergic to the cold, I get the exact reaction from people, when I say “I’m allergic to the cold” they say “yeah me too” them I’m like “no im actually allergic”. Sorry to laugh, I can just totally relate to your comment.

  208. William says:

    Hi, I’m 14 and I was diagnosed with this about 3 days ago. My life long dream was to join the military and serve my country proudly. I was waiting and waiting till I was 16 to finally enlist. That dream is over now, I barely want to live anymore..

  209. Christine says:

    When I was a kid, I had what I thought was a birthmark on the inner side of my arm. Just a small brown spot, as I got older, it would puff up and become itchy. One day that spot left and these horrible welts showed up from time to time…always after swimming! Now I’m 41 & the cold is a nightmare, I go swimming but the pain is overwelming sometimes…yes it is now painful to be cold. They cover my entire body, and last for hrs and hrs. My Dr told me I was crazy and ppl are not alergic to cold… lol lies! So glad I found this page.

  210. Jai says:

    Same with me, they never believe me until they actually see me break out all over.

  211. Gloria says:

    I had this issue around November/December of 2015. It was terrible for me because I’m a young adult who loves going out. It also sucks when I put on make up and then when the cold air hits I start getting hives on my face. It gets super itchy and noticeable on my face so I just take my make up off and end up cancelling my plans. It started to get better as spring/summer came. I would take allergy mess from time to time for the hives to stay away temporarily. Then around September/October 2016 (cold air arrived and hives got worse again), my family told me about this supplement. And OMG it was a life changer!!!!!!!!!!!!!!!!!!!!!!!! It’s called Renew Life Critical Liver Support. I’m on my second bottle as of right now but my body progressively got better and the hives are gone as of now. I used to get sick easily and I think this stuff helped my immune system. But most importantly the hives went away. I would take 1-3 capsules a day, everyday. sometimes I would forget haha. I think what really helped was from the main ingredient MILK THISTLE. I googled this ingredient and they have other brands/supplement with milk thistle and it seems to be very good for the body.

    The brand that I took had a slight odor that was kind of like milk. Weird but that’s normal. The first day I took it I couldn’t tell any difference. I was told to keep taking it and the hives will eventually calm down. So I kept taking it and the hives started going away. I had big welches before and then after taking the supplement the welches appeared smaller over time and eventually disappeared. I would say take at least two bottles for it to completely go away. Right now I don’t have any issues which is why I take the supplement from time to time and still have 1/3 of the bottle of left (2nd bottle). Oh I also, took allergy meds from time to time when I started the supplement. I would take allergy meds at night since it lasts for 24 hours. It would help with hives appearing while I was sleeping and I could go into work comfortably. When I got to work I would take the supplement through out the days. I started taking allergy meds 3 nights/week along with the supplement during the day. And progressively stopped allergy meds and kept on with the supplement.

    It really helped me and I hope this will help whoever tries it 🙂

  212. Ian says:

    Had this condition since I was about four years old, after a nasty bout of chicken pox. At 47 yrs old, I still get symptoms, noticed it today after taking dogs to the beach. Bright red swollen hands with white nettle rash.
    I seem to be vulnerable if I’m a little run down or have a cold or something. Made life difficult as a kid, winter sports were a problem . No shorts for football , my entire legs would get covered in rash. Kids were cruel and pointed / laughed.
    Never took anything for it, just wrap up warm and take precautions.
    Last time doctor asked if I had any alergies, laughed when I said ‘ the cold’..
    Stay warm everybody
    Regards Ian
    UK

  213. Rebecca Nelson says:

    I developed it when I was about 13, and while it has caused problems in certain situations (swimming, for example), it has not been a major burden for me. It does not have to be for you, and it is certainly not the end of the world. There are medications and preventative measures that can keep it under control. And, if you’re one of the lucky few, you will not live with it forever. I’m not sure what the military policies are regarding admission of people with this condition, but by the time you’re 16, you’ll have learned what your limits and reactions are so you have a better idea of what you can and can’t do. There are plenty of military jobs that would not be affected at all by CU. Don’t give up hope, friend.

  214. irene carlson says:

    Mine now is very life thretening and I fighting for my life.No one exept doctors who know my history and see what happens once exposed to cold environment’s below 22. C. I turn red all over body ,and swell so badly to remove clothing I must use sisseres .

  215. Eve Graves says:

    Where do you live? Are you in a cold climate? The Lung plus and Warmskin will do wonders for you!

  216. Suzanne bettin says:

    I have been living with cold urticaria for years…
    It is not pleasant..and indeed is unknow by most people…
    i live and had been raised in quebec, canada and skies for years….
    And now, with that weird desease( no more winter sport) i can barely walk outside 10 minutes … i know that if its windy and below 13 degree celcius… im in trouble…

    I guess im not alone…
    But i wish it will go away …

  217. Tiffany says:

    Has anyone ever been told that their CU is secondary to an underlying health condition?

  218. Susie says:

    Hi Suzanne
    I have had CU for over 30 years. Swimming is the most dangerous for me but I returned to skiing with an epi pen in my pocket ( incase lift broke down or I get stuck on the mountain) . So far it’s been fine. I’ve now managed skiing in Japan and Colorado. I’m trying Lake Louise this season which will be a test!! I always wear another layer more than others. As long as you are well covered up and take Telfast or similar, it’s possible. Experiment on a warm day in the mountains. I didn’t go for years imagining I couldn’t but as I wanted my kids to try skiing I went back and realized it was manageable.
    Good luck!

  219. Lori says:

    Hi my daughter just got diagnosed with this a few months ago and i just wanted to pick some other peoples brains with this since I mention it to some one and they have no clue what it is or what I am talking about my daughter had a reaction at the beach in the water and was taken to the hospital via ambulance, my daughter is 8yrs old

  220. Clare ennis says:

    Hi my name is Clare. I’m from Glasgow in Scotland. I’m 28. And iv had cold urticaria since I was a young child about 7is- 8ish. It has gradually got worse as I have got older. ( consultant said it would get better as I get older) I can be warm but my skin can be cold and I can come out in itchy big red and white hives all over my body. Not little ones but big massive ones. The sorest parts I get them are my hips Botox and back. I get big rashes under my eyes also. I can feel this tingly sensation all over my body before the hives come out. Feel like I have to scratch them. I now take fexodedine an antihistamine 3 times a day and also carry an epipen around with me. When I was pregnant and also breastfeeding I had to stop my treatment. I really struggled. People laugh and sing belive me when I say I’m allergic to the cold ahah. Nice to know I’m not the only one.

  221. KK says:

    As the previous poster mentioned, don’t give up hope. You didn’t elaborate on your UC, but if it’s not too severe you may be able to finagle your way in. I’ve had UC since I as about 5YOA and still served four years as a grunt and MSG w/ the US Marine Corps. My UC has gotten progressively worse, but at the time it took quite a bit of exposure to trigger an episode and I just carried more snivel gear to stay warm. Additionally, I lucked out in that my battalion never deployed to extremely cold regions and I avoided certain units (Such as our boat company or Force Reconnaissance) which faced more exposure. Also, when I enlisted I honestly didn’t know I had UC as there wasn’t much awareness of the condition, and when I informed the military’s physicians they chalked it up to skin sensitivities. That said, you’ve already been diagnosed with UC and will need to disclose it during your initial physical. If you haven’t done so already, you should reach out to a recruiter and see what they say. Maybe explore options to enlist at the of the year when they’d be more eager to get waivers to meet annual recruiting quotas???

  222. Clare ennis says:

    Awww William don’t be feeling like that. There’s worse things that you can have in life. Trust me. Your still young I’m sure there’s medication that you can get to control it. And and there’s soo much more to life. Don’t let anything hold you back.

  223. Nina Kiteley says:

    My daughter developedCold Urticaria from nowhere when she was 11 )now 17)we have triedall antihistamines, both H1 and H2 blockers etc etc.Nothing worked. We fought for years together on Xolair and it reallyis a life changer. It took 5months to work and unfortunately it isnt working as well sothey are going to give her 4 injections a month instead of 2. She also has Mast Cell Disorder Syndrom (MCAS/MCAD). She is stillon 16 tablets a day with the injections though.

  224. Anne Fernberg says:

    I live in Cleveland and I was diagnosed in high school with CU. I’m now 39 years old. No one believes me when I tell them about it. I’m not on medication or have an Epipen. My symptoms have gotten worse over the last year. I haven’t been to an allergist since the original diagnosis. So I am due to see one because like I said it’s getting worse. I can’t be outside for more than a few minutes without getting hives. I went swimming once and that was a huge mistake because my entire body broke out in hives, I ran home and jumped in a hot shower which helped a lot. Good luck to you all!!

  225. Jevgenij says:

    Hello from Lithuania, Vilnius. I’m 22 year man who is living in own home in Vilnius country. Im allergic to 17 celsius cold. Now in another side of window -15 celsius. fourth dose of antihystomines doesnt works. All who has cold uriticaria diagnosis needs a strong soul, a little bit more work to make simple things. Good luck for all, and hope that humans investigate a cure faster.

  226. Kristina Cindric says:

    This sounds like my history of CU. Also in highschool, now I’m 36, nobody took me serious when I said what I have, but that doesn’t bother me anymore:) I take no medication, neither do I have an epipen. I learned however to control my condition. I go even skiing and ice skateing and don’t break out if I do the necessary preparing. I think that my CU was caused by lack of vitamin D due to avoiding sun when I was younger. Pale skin was popular back in early 90’s and I was stupid enough to stick to indoors and rarely take a walk in the sunshine. Soon after that certain year I developed symptoms and it was bad. Now when I have to go out on cold weather or do wintersports I make sure that my blood circulation is alright and sit half an hour in the sun before heading out. It does wonders and helps me a lot! I’m doing better every day just by taking my daily dose of so needed sunshine to be abe to produce enough vitamin D to help me through the day.

  227. Kristina Cindric says:

    This sounds like my history of CU. Also in highschool, now I’m 36, nobody took me serious when I said what I have, but that doesn’t bother me anymore:) I take no medication, neither do I have an epipen. I learned however to control my condition. I go even skiing and ice skateing and don’t break out if I do the necessary preparing. I think that my CU was caused by lack of vitamin D due to avoiding sun when I was younger. Pale skin was popular back in early 90’s and I was stupid enough to stick to indoors and rarely take a walk in the sunshine. Soon after that certain year I developed symptoms and it was bad. Now when I have to go out on cold weather or do wintersports I make sure that my blood circulation is alright and sit half an hour in the sun before heading out. It does wonders and helps me a lot! I’m doing better every day just by taking my daily dose of so needed sunshine to be able to produce enough vitamin D to help me through the day.

  228. Beth says:

    I’m 43, live in Ohio and also have this condition. I was diagnosed when I was 20. It first appeared when I fell into a lake from a canoe. I thought it was some sort of weird rash from the water, but then it kept recurring. It really stinks when I’m trying to sit outside and watch my kids play sports. Sure, everyone else watching is cold and/or wet, but they don’t get red, itchy hives all over their faceand body. I take about 1/3 of a Zyrtec every night, and that keeps the hives under control for the most part. But no amount of Zyrtec has ever kept me from getting hives when I need to sit outside in the cold for an hour. I’m thinking about trying some ski balm for my face to see if that may help. I’m also going to look into other suggestions I’ve seen here. Knowing there are so many of is helpful!

  229. Eve Graves says:

    Testimonial from Lois who has CU and lives in MA
    I’ve had the opportunity to try out WarmSkin skin protectant and the Lungplus mouthpiece from Eve. I’ve been diagnosed with cold urticaria about 3 or 4 years ago after going nuts about why I kept breaking out in hives and two years after the birth of my second child. I had my third child with the diagnosis and though she had many food allergy concerns, she does not have CU (phew!).

    The Aurora WarmSkin lotion helps nourish my extremely dry skin and acts as a barrier to help me handle the cold. I honestly expected some greasy feel since my skin tends to soak up any lotion but still remain dry with a film of greasiness over it. The WarmSkin did pretty good. I also tested it on half of my face and the other bare to see how the difference felt. The cheek with it on was pink rosy but the other side without was its blotchy usual and then itchy with hives when I got back in. This was being out for 15 minutes.

    I tried the Lungplus without the WarmSkin while out playing with my 3 kids for about an hour and a half. It was the greatest feeling just being able to be out there with my kids having fun in the snow. I don’t know how the contraption works to keep my body warm for me to not have any hives reaction throughout the time outside and even afterwards in the house. I tried it again for a second time for a longer time, a bit over 2 hours. Again, my body was fine. I still prepared my layers of clothing top and bottom. I did not exert myself physically the first time but on the second time, I went out to shovel and play. My breathing was nice and deep. I didn’t have any problem with feeling cold, breaking out in hives, or shortness of breath. I felt that I could actually stay out longer and be okay.

    Thank you, Eve for finding the WarmSkin and Lungplus. I have a way to be out with my family during Winter and participate with them in the sports that we’ve always wanted to try. I won’t have to be left behind in a warm place and wait for them to return, I can be with them and try out these winter sports myself!

  230. Abby S. says:

    I’m 13 and from Kansas. My hands, arms, face, and legs get covered in painful, itchy hives when I am exposed to cold temperatures, my skin turns bright red, and it’s extremely painful. I’ve dealt with it my whole life and will continue to deal with it, and I hate it. Glad to know I’m not the only one.

  231. Jackie says:

    We recently received confirmation that our four year old son has cold urticaria. He also has a severe food allergy and him beginning school in the fall terrifies me. We live in SK, Canada and winters are terribly cold. It seems the more he becomes exposed to the cold, the more he reacts. This is such a terrifying allergy because it’s not black and white and we don’t know when he’ll react. Just looking for some advice from those who have had this since you were young if your allergy increased/got worse over time the more you are exposed to cold?

  232. Susana says:

    Hi,
    I’ve been breaking out in bad hives for around two years now. It’ll cover my entire body and all I need to do is walk inside a place with aircon or walk past a fan to break out. I was diagnosed three days ago and it’s really getting me down. My body and face will go bright red with hives and itch and burn. Plus it looks ugly. How do you all cope with it? It’s really getting me depressed. I live in Sydney and have break outs every single day.

  233. Zoey Sue says:

    Hi my name is Zoey and I have Cold Indused Uticataria. I am 12 years old and I live in Southern CA. My condition was discovered when I went into the pool and I came out of the pool and I was covered in hives I felt light headed.Also I vomited. So I went to an allergist and about a year later he said that this condition is super rare and that in his 20 years of working at that place I am only the third case he’s had. But thankfully my condition has gone away a little bit. So that is my story. So please help us get the word out so if there is a cure then our next generation won’t have to suffer from this terrible condition.

  234. Hello All,
    My son is 19 years old and has Cold urticaria since he was 11. He can’t eat or drink anything cold. Even on warm days if his sweaty and enters a building with the AC on his has a reaction. He his to have an EpiPen on him when ever he leaves the house. The allergist that he sees said he never seen someone this severe. He wearing heat gear to stay warm, he also has hot packs for his feet, hands, and body. We learned that you have to make life style changes. No ice packs for injuries, and no cold iv’s. After 4 years of him having this condition I finally realized that he needed to normal kid and enjoy sports.
    He’s very athletically inclined, so he played football his 4 years of high school with the help of the allergist. He takes 180mg of Allegra and 300mg of Zantac which is a h2blocker and makes the Allegra work stronger.

  235. Eve Graves says:

    Mine actually started when I was in my teens and went away in my 30’s. Warm skin and a Lungplus unit will help him be able to go outside.

  236. Jeremy says:

    I am 33 and have suffered with Cold Urticaria for about 13 years, officially diagnosed about 2 years ago. My symptoms started around the time I turned 20, but have gotten progressively worse, especially within the past 5 years. I no longer am able to go swimming unless the pool is super heated; I have to be completely bundled up if I am out in the cold, etc. Just last night I was out in the cold for about 5 minutes and had a severe reaction where my face turned bright red and I could feel it burning. My symptoms include hives, rashes, light-headedness, and a cold feeling in my throat.

  237. emily says:

    Hi my name is Emily i am 15 years old and i was diagnosed around 10 years ago. i was told that over time the effects would lessen and then go away all together however i have not noticed any change. i have not met anyone with this disease so it makes me feel self conscious and insecure when i have to explain to others why i’m covered in hives every time i step outside or go swimming. glad to know i’m not the only one. i am a very active person and enjoy playing sports outside during all seasons so to keep the hives and redness at bay i take benadryl beforehand. the only problem with this is that i lose energy and feel drowsy. if anyone has any recommendations on how else to treat if please share

  238. Jocelyn says:

    My name is Jocelyn,
    It wasn’t until I was 13 years old that I was diagnosed and I’m currently 22. I would break out in hives every time I went into the pool. I never knew what it was until one day I hurt my arm and decided to put ice on it and broke out with hives. I had a burning, itchy sensation and decided to search online. I was later diagnosed medically and was given anti-histamine (Zyrtec), and changed my hives from being elevated bumps to red small elevated bumps similar to razer bumps. Fortunately, I live in Florida, but I do find myself breaking out in hives from time to time. I’ve learned to always carry a sweater and avoid any cold related substances. For instance if I’m going to drink a can of soda, I wrap napkins around it so my hands don’t get numb. Also, I have a heated bed just in case it gets to cold at night. I have seen snow and learned several tricks as well. I carry little tiny heated bags and keep them inside my gloves with me at all times. Layering is extremely important! Always carry a scarf! My face seems to be the most sensitive.It’s extremely uncomfortable, but worth the experience and the memories you will make. I find anything water related is harder to control. Only if it’s a really hot day that I find it manageable for me to go in the water. Living with this condition, you learn what are your triggers and manage what you can and cannot do. I continue to have hope that one day they will find a cure for this. Until then I will enjoy life to my greatest potential.

  239. Ruby says:

    Hi my name is Ruby and I suffer from CU. I am so glad I came across this link I swear I thought I was the only weirdo that had this but now by reading others suffer from this I don’t feel so alone. As you all know this is very painful and itchy. I live in southern California and whether here is not always cold but when at family functions it very disappointing when we have to leave early because I’m covered in these hives. I’m looking into some essential oils hoping I can find something to prevent it or somthing to not make it so painful. Glad I’m not alone

  240. Alex says:

    I so glad there are others out there! Im just turned twenty and I first notice i have CU was my 9th or 10th grade of school when i was waiting for the bus. I was itching really bad, i chalked it up to playing with our family dog earlier, then it stop itching suddenly. Next thing I know Im on fire, and itching. My skin was hot and i had welps and a rashm its lasted for about 30min. No one believed me at first till i happen right in front of their eyes. So im fearfull of every winter and i bundle up almost everyday of winter and I am just terrified. But my family help me calm my nerves. I just want a cure or doctors to believed you when you say “I allergic to the cold”

  241. Rebecca Nelson says:

    Hi there Ruby. I was born and raised in SoCal, and have had CU since about 1990. I react around 72 degrees or less. People seem to think that living somewhere warmer helps, but it doesn’t. Everywhere in SoCal blasts the air conditioner to a miserable level most of the year, right?! I discovered leg warmers make a huge difference in keeping me warm and I always have a lightweight jacket with me. I’d rather look silly and stay warm than be fashionable and miserable. Just this past summer I discovered that taking Allegra (fexofenadine) daily (just the regular OTC dose), helped a lot. I was able to to whitewater rafting in icy water without getting any wheals. I couldn’t believe it!

    I find it sad that you say you leave family functions because of the hives. Isn’t there any way you can just warm yourself up so you don’t have to leave? I know the itching is awful and the hives look ugly, but they do go away fairly quickly if you warm up.

    Good luck finding what works for you. It’s nice to know there are people out there like me. 🙂

  242. Rebecca Nelson says:

    Hi Jackie. How awful to worry for your little guy. I developed CU when I was about 12 or 13 years old. I just turned 40 last month. I believe it’s rare for people to die from CU – usually those who die do so because they have a reaction while swimming that makes them pass out in the water. My motto has always been “Gotta keep the torso warm”. I grew up in Southern California where just about everywhere indoors in air conditioned. Now I live in Montana and work as an outdoor schoolyard supervisor for 75 minutes every day after school. Not so fun when it’s below 0, or below 70F for that matter (I react below 73). My allergy only improved when I was pregnant, but only by 2 degrees, then went right back to normal after my children were born.

    Children are smart and resilient. Make sure your son knows that he needs to keep his skin covered when he’s outside in the cold. I wear two jackets, a double-thick fleece scarf and hat, gloves, thermals, warm boots and extra thick legwarmers up to my knees when I’m outside. One of those jackets is a shin-length down jacket from Land’s End. Some days I wish I had a ski mask to help keep my nose and cheeks warm. I imagine the biggest problem you’ll have with him is if he runs around he’ll get hot and want to take things off, then the sweat will cool and he’ll get itchy.

    I found that over the years I got better at ignoring the itching (because scratching just makes it worse!), so I might be itching, but I can still function fairly well. I don’t let it stop me from doing what I want (including skiing and swimming, though I DO get out and warm up while swimming if I start to get too many hives on my torso).

    Like other members have noted, Allegra seems to really help keep this allergy in check, so you might want to talk with your son’s doctor about that. And, thankfully, since it’s a reaction to being cold, warming up takes away the hives and you shouldn’t have to worry about the allergens staying in his body like you do with food allergies (which are, therefore, way more dangerous). Only a rapid-onset of full-body hives usually from water submersion is dangerous because it can cause low blood pressure and passing out.

    I avoided a potentially fatal reaction when I first developed the allergy because I’d just learned about the symptoms of hypothermia. I was at camp and noticed that in addition to the hives, I had stopped shivering because I had grown too tired to shiver. Instead of getting back into the cold mountain lake, I went back to my cabin and warmed up. I often recommend to people to educate themselves about hypothermia and to buy a few good pairs of leg warmers. They’re like little leg jackets that can get pulled up to warm you up, pulled down if you get a bit too warm, or pulled off over your shoes if you want them off, unlike thermals which you’d have to go to a changing room to take off.

    Hopefully self-care will become second-nature for him, and maybe he’ll grow out of it. Some people do.

  243. Rebecca Nelson says:

    Oh! The doctors! When they ask me about any allergies I have to say “Please make sure that’s in my file. I get hives and I need to have a warm IV.” when I mention the allergy to being cold. And they usually say “Oh! You’re REALLY allergic?” *sigh*

  244. Eve Graves says:

    Hey there is a product called WarmSkin that will basically eliminate the issues when you have it on. This is a lotion, totally natural, it is a barrier to the cold, it is what the NFL players use on their arms.

  245. Katie says:

    I´m 14 and I am from Ohio also. I have had this problem since grade school. I used to go to the nurse nearly everyday because it was too cold a recess. I also can´t hold cold containers, like a bowl of ice cream. I normally just get hives and itching/burning skin after my skin starts to adjust back to warmth, and while it is very uncomfortable and rather painful, it was never to serious. But on Memorial Day last year, I went swimming in Lake Erie and the water was too cold. When I got back to the docks, I instantly fainted and I had to stay in bed for the whole day. I always thought I was so weird for having this because I had never heard of it. I just have a fear that someday it will get worse.Thanks for letting me share!

  246. Johnecca says:

    I can’t believe I found all of you. I didn’t know there were so many of you with the same thing I have. It’s kind of comforting. My first episode was when I was 6. I’m now 45. I’m from Pa. but moved to Arkansas 4 years ago. I agree that more people need to be aware of this disorder so they can help you if need be. I had 1 life threatening event that happened when I was 14. My body was shutting down because no one knew why this was happening, not the doctors, no one. Many hospitals are not familiar with this. I wear a necklace that tells just in case.

  247. Hi all, my name is Cindy and I’ve had Cold Urticaria since I was 13, I am now 62. I live in Pa., right now it’s 18 degrees and windy, there’s no going outside for me. You all describe my life exactly, I’ve just learned what I can and can’t do. After a while you just live with it and don’t take any chances, one bad attack where I passed out so I don’t take any chances.

  248. Eve Graves says:

    HI,
    Have you tried WarmSkin or a Lungplus? Both will allow you to be outside without incident.

  249. I have been wanting to get an id bracelet or necklace as well for some time. I really need to do this. My only rational fear of this condition is to be taken to the hospital while unconscious or unable to communicate and be administered a cold IV (they store lactated ringers in fridges), which would mean a devastating internal reaction. Good idea.

  250. Johnecca says:

    Yes do. They take extra percations when they do surgeries and stuff to. I don’t leave home with out mine. And a lot of people including doctors are not familiar with it.

  251. Syiha says:

    I am a 20 year old student living in a tropical climate (mostly sunny days) in north Borneo. Living in a hot area does help, my reaction happens only every time i touch something really cold for a long time or went for a cold swims in the lake or waterfalls. Because of the hot climate, my skins hardly shows any reaction because it’s always a sunny and hot days.

  252. Meka says:

    Hello all,
    I have suffered from cold hives for about 3 years now. When it first developed it was pretty frustrating because my doctor couldn’t figure out what was wrong with me & by the time I went to her my symptoms were gone. I had to do my own research & I shared what I found with my doctor & she sent me to an allergist, & he did the ice cube test & I instantly broke out into hives. It’s good to see that there are other people who can relate to me. Have anyone found any allergy meds that help with the hives?

  253. Becky says:

    24-hour OTC Allegra (fexofenadine) works for lots of us. After taking it for a couple weeks this past summer I went white-water rafting and sat in the front of the boat with my feet in ice-cold water for an hour (got completely soaked!). I turned red, but no hives or itching anywhere. It was amazing! First time in 25 years water that cold didn’t take me out.

  254. Jami says:

    I live in PA, and have had it for 10years but only gotten worse 2 years ago that they now started treating me for it. Doctors all seem clueless how to treat. I feel like my life is over…… I just wanna be able to swim again as I grew up an avid swimmer. Not being able to swim or play in the snow with my niece and nephews really upsets me. I feel losing so much I love to this illness is only making my depression and anxiety worse.

  255. Lois says:

    Hi Jami,
    I’ve felt the same way… growing up in Hawaii always surrounded by the ocean. It’s so hard to comprehend to my family and friends that I could die if they jump into the ocean. Now living in Boston with this New England weather, it’s been frustrating wanting to take my kids out to play in the snow but putting myself at risk! They’re ages 7, 5, and 2. I’ve tried the WarmSkin from Aurora brand to protect my skin from the wind and cold, and also the Lungplus that is exclusively sold by Eve Graves. It has helped me be outside longer and actually able to exert myself without any allergic hives reaction during and after coming in from the outside. I didn’t want this allergy to hinder my life and ability to spend those quality times inside watching life go by. I still take precautions but why not try alternative things first? Granted I’m regulating with one Zyrtec a day but there have been several instances where I needed to double up. So I tried those two additional things. Better to have more safety gadgets in your pocket for prevention rather than ammunition to combat it. I hope this post helps. When you mentioned your niece and nephew, it’s exactly how I felt about seeing my kids playing out in the snow and begging me to come outside with them.

  256. Meka says:

    Thank u Becky!

  257. Lovedalya says:

    Hy..i’m 15 and from South Africa. My symptoms started showing in primary. I need help convincing my family that this is a very serious matter as they force me to expose my skin to cold temperatures.

    They do not believe me when I try to explain my condition to them. Can anyone please provide solutions on how to approach them and make them understand what i’m going through .

  258. Rosalie Brummett says:

    Hello Everyone,
    I am very surprised to find so many people with the same issue. I was 3yrs when I was diagnosed and am now 58yrs. I grew up in a small town in SE Washington. It has been a lifelong issue as doctors won’t believe you. They make you feel as if you are losing your mind.

    My Mom was told to bathe me at the same time everyday with the water temperature one degree lower than the day before. I had three snowsuits and mittens so I could go sledding, have snowball fights, etc with my older siblings. If they were all wet, I had to stay inside. I have learned how to stay warm and I take the teasing for dressing for winter in early fall or late spring.

    It is reassuring to my sanity to find out that I am not the only one. CU is rare and can cause issue with IV’s for surgery, etc. as it will cause swelling. I had an emergency cesarean with coplications. I was in hospital for a week and the medical staff could not understand why my veins would swell and close up. One nurse told me that she warmed the IV and that is th one vein that didn’t shut down.

    I hope all of you find a way to enjoy your life even with CU.

  259. Kristina Cindric says:

    Dear God, 55 years you say? It’s been only 20 years for me and it feels like a lifetime.. It’s rare here where I live, I don’t know anybody around who has it..But at the same time I know many who are allergic to sunshine and that would freak me out even more than the CU. God bless you for being so patient

  260. Lauren says:

    Hi,

    I’ve had CU since I was 9 and was finally diagnosed at 15. I have taken Zyrtec daily for the past 19 years and have encountered almost no issues. Since I live in South Florida, I’m rarely exposed to cooler temps (my office space is very reasonably comfortable and on the warmer side). I continue to avoid swimming in cold water and ensure I’m appropriately dressed for any cold weather travel or the rare cold front. I wish all of you the best at finding the best medicinal cocktail that works for you. Those 6 years I went undiagnosed were a daily hell of consistent itchy hives and swollen hands/feet when exposed to air conditioned spaces. I am sad to read some of you still suffer often. I consider myself lucky to have things under control for the most part.

  261. Leslie Walcoff says:

    Hi all – I’ve had this for a couple of years and was diagnosed last August. I have a question. What do you do if you get hurt? Most people would apply an ice pack to a twisted ankle, right? Tonight I burned myself on a pot. Not a terrible burn, but I’ve got a blister from it. Everyone wanted me to put ice on it, but I tried to explain that it would only make it worse. Any ideas for these types of situations?

  262. Meri Lowry says:

    Hi, I’ve had this my whole life, but it didn’t come out till I moved to Nevada as a kid. It reared its ugly head, it progressively got worse as I got older. I don’t go anywhere without a light jacket, and arm warmers. My youngest daughter, hers came out after swimming. It’s sucks. I avoid ice if I pull a muscle. I can’t stand to drink cold drinks. My husband didn’t believe me at first, he does now! Allergy pills are a must for us during the winter. I recently found 1 dr that believes me about this. We found out that eucerine cream works. So amazing

  263. Lois says:

    Running water or aloe Vera is what I normally put on

  264. Rosalie says:

    For a burn use honey and a band-aid, aloe vera also works. I was diagnosed as 3yrs and am now 58. Trying to get anyone to understand is very difficult.

  265. Leslie Walcoff says:

    Take pictures to show them the effect that cold has on you. Also go online and pull a few articles about it. Just Google “cold urticaria” and one of the first results is from the Mayo Clinic. Once they read up on it maybe they will understand.

  266. Audrey says:

    I have had cold urticaria since 1987. I was finally diagnosed in 1992 by my excellent Doctor who at the end of the appointment asked the, “is there anything else bothering you?” question. I had stopped even mentioning it to doctors because they just laughed off my explanation of a cold reaction. I suffered daily. I have taken Zyrtec daily since the diagnosis. If I know I will be in a cold place for an extended period of time like a movie theater, a super market, a hospital, or swimming or in the snow or cold weather of any kind I may take two or three 10 mg tablets of Zyrtec. If I am sleeping in a cold place I will take a Benadryl as well. I don’t do well on that in the day as it makes me too drowsy.
    I have passed out in a shower after swimming once and being in a boat (for fear of falling into the water) scares me. I can be in the water 30 miniutes max before the symptoms begin. If I remain there I lose strength and pass out. What a thing for a former swimmer. I also grew up in Hawaii by the way.
    I have met 4 others with this condition but theirs did not last for so many years. One woman’s condition ended after her pregnancy. I have looked into the “low histamine” diet recently thinking I could probably help myself more. I wish someone in the profession would do a study on us!

  267. Renae Botbyl says:

    Hello. My 2 children, ages 13 and 14 both suffer from severe cold urticaria. My son has gone into anaphylactic shock and respiratory arrest from the cold water before being diagnosed as they thought it was from algae in the water. My daughter has severe systemic anaphylactic episodes and has gotten worse in the past year. I lived in upper Michigan and moved to Kentucky but it is still a constant struggle and am currently in the process of trying to relocate to the west coast. My children have this far worse than just hives and welts and it is very life threatening. I also wish they could do some kind of study to find what causes this rare condition. I look forward to hearing of other cases on here.

  268. Alia Rolley says:

    I developed this condition when I was about 10. I had many episodes that were brought on by cold water. Twice they were severe enough that i fainted. After my family moved to a colder climate I had to be very careful. At the time, allergy medicine worked to keep symptoms to a minimum. That enabled me to go on a few ski trips and be out in very cold weather. By the time I was about 20 the condition was no longer an issue. No idea why.

    Now, about 18 years since mine went away, my 12 year old son suddenly developed CCU. So odd to me that for both of us it sort of came from nowhere. It was the cold ocean that brought it on today. We will have to watch him closely in the future.

  269. Valérie says:

    HI!
    My name is Valerie. I lived in Québec, I am 37 years old. I began to have urticaria in the cold when I was 11 years old. I am mom of 3 nice girls. I do ski, ice canoe… all the sport I would normally don’t do with my allergy. After many year living with this condition, I realized that I can do natural desensitization; I begin with very short time, letting my skin react. 5 minutes, after, 10 minutes, and again and again. Normally, after one month of desensitization, I am ok for few month, until I get sick. When I get sick, it begin again. 3 or 4 time, I was fainting after a big reaction. My blood pressure is going down when my skin is reacting. If I can help you and provide you some advise, please let me know! I really don’t take this as a limit in my life and I think my parent help me to think in that way. Valérie

  270. Mona says:

    Hey Guys,
    My name is Mona and im from NYC. Ive had CU since for the past 11 years and im only 21. It took doctors years to actually believe me and take it seriously. Ive tried EVERYTHING, once doc even put me on doxephin(the side effects allegedly help with it). I was in the hospital the other day and i had to fight with the doctor so that we wouldnt put a cold IV in me. Its really a struggle.

  271. Tatiana says:

    Hi

    My name is tati and Ive had CU for about 4 years. I’m 10 years old. I have to wear gloves so I don’t touch anything cold. I live in Malaysia and it’s really hot but indoors, it’s freezing. I’m moving to England soon and I’m so worried

  272. Laura says:

    Hi,
    I was first diagnosed at age 10. I frequently got hives on my legs at recess, I wore a school uniform that was a skirt. Then I went into anaphylactic shock from my neighbors cold swimming pool. It took some time but the allergist eventually figured it out with the ice cube test. I was told I might outgrow it, but 26 years later I still have it! I take Allegra daily all year round. I still break out in hives when the weather is bad or holding something cold but it is more manageable and the hives are not as severe. After having it for so long I’ve become pretty good with knowing my limits and listening to my body.

  273. Hi, im claire. I live in lancashire,england. I have had this for as long as i can remember! I went to the doctor when i was 19. He reffered me to the skin department of the local hospital who made me sit for 10 minutes with an ice pack on my arm. It was horrible. I was reffered back to my doctor who perscribed antihistamines. Im now 30.
    I often forget to take them and its a daily battle for me, even when its warm, if theres even a slight breeze thats enough. So when everybody moans about the stuffy weather and no breeze…thats perfect for me!! I find that its not well known about and when you tell somebody you have an allergic reaction to the cold, they think that you just dont like the cold.
    I didnt know that it even had a name until i recently read that a young boy had it and him and his parents moved to a warmer country.

  274. Brandon says:

    My name is Brandon and I have had CU for about two years now. I got it when I was 21 in college and it came out of nowhere. I live in Buffalo, NY and have been used to the bad winters for all of my life. I have always disliked the winter months, but now CU has added another layer of that, so that when I am outside in the chilly weather I feel gross or anxious. I don’t know where it came from, but it seemed to line up when I contracted oral herpes simplex a from my then and still current GF. I had a ridiculous fever for a week and then I went out to go to a spring practice when I finally felt better and the weather was a bit chilly. I came home and my face was covered in hives. Took me 6 months to realize it was the cold. I had been getting them every time I swam in some gorges and stuff and I thought I was allergic to something in the water. But I also would get them at home on my feet when working at my desk. My doctor seems to not care. He just does the same thing every time I tell him I have them and he just does a blood test and shows me my results are fine. I came here because I have been experiencing some mouth issues. Waking up with a tongue and teeth that is slightly numb and semi coated in something and I am wondering if it is just the cold uticaria in my oral cavity from cold drinks and such? Hope someone can relate.

  275. Kathreen says:

    Hello,
    I take stinging nettle supplements + quercetin, seems to help with my cold urticaria. I’m also allergic to cats and I have one. It takes a couple weeks to work. Before I started the natural supplements, I did a bentonite cleanse for a week, I put ateaspoon bentonite in a cup of water before I went to bed then in the morning I stir and drink super fast, make sure to use glass cup and wooden spoon of some sort, no metals.. then that seem to cleanse me of all the prescription allergy meds I was dependent on that always left me fatigue. When I started taking quercetin and stinging nettle, I had energy and was a little resistant to my allergies but when I don’t take it consistently for weeks it comes back..

  276. Lindsey says:

    Claire, I live in Dayton, Ohio. I have not necessarily been diagnosed, but my friend is a Dermatologist and she pretty much confirmed it.

  277. John Eubank says:

    Cold urticaria (essentially meaning “cold hives”) is a disorder where hives (urticaria) or large red welts form on the skin after exposure to a cold stimulus.

  278. Amanda says:

    Hi, I’m really new to this and still learning. My 17 month old daughter was recently diagnosed with CU. I dont know much, as we’re still waiting to seethe specialist, but I’ve been doing as much research as I can. So far she gets these red welts that appear on any skin exposed to the air, most commonly her cheeks, arms, and legs. Her hands also get red and swollen. So far, she hasn’t had any other symptoms that I know of. But after reading some of the potential reactions, I’d be lying if I said I wasn’t terrorfied for her life… we live in Canada (western Quebec, not far from Ottawa), and the thought of what could happen to her come the winter haunts my thoughts every day. I e also been told that there’s a 50% chance my second daughter (only 1 month old right now), could also develop this disorder. Are there any other parents who’s young children have CU? How did/do you cope with the fear and stress?? Thanks.

  279. Patricia Simpson says:

    Hi Amanda,
    I found this FB page for UC parents. I haven’t checked its content but it might be helpful with 1,000+ members.

  280. Patricia Simpson says:

    Oops, forgot to add the link:
    https://www.facebook.com/groups/ColdUrticariaParents/

  281. Sarah says:

    Hi, I have had cold urticaria for 10 years now. I was diagnosed with urticaria after about a year, but doctors have all laughed when I said it is brought on by the cold.
    I have it mostly under control though, you need to take H1 AND H2 blockers. H1 are the normal antihistamines, but H2 are usually used to treat excess stomach acid. Zantac is the commercial name, but the chemical is called ranitidine. You should be able to buy it over the counter.
    I’ve started to become concerned with the long term effects of taking antihistamines however – I’ve taken them every single day for a decade! Anyone have any research on this?

    Thanks,

    Sarah from Ireland

  282. BRANDI DAVIES says:

    I was wondering what type of specialists are being seen for this. I believe my daughter has CU

  283. Lois says:

    I was referred directly to an Allergy Specialist.

  284. Pamela says:

    Hello, I come from the Netherlands, I’m 20 years old and I have cold urticaria as well. The doctor just gave me some antihistimines when he read about the condition online, they didn’t even test me with ice cubes and I feel like they don’t take me seriously. So I went back to talk about some problems I experienced in the winter, like having headaches and dizziness and I asked if it could be related to the CU. This time it was another doctor so he didn’t know about the CU and he looked at me like I was an idiot. So I went back home. I think I’m going to the doctor real soon again because I want a better opinion and better treatment.
    I don’t know anyone with this allergy so I’m glad that I found this page c: Now I can read about your experiences.
    Looking forward to read more..

  285. Lilly says:

    Hi I’m Lilly and I live in South Carolina, When I was about 10 when I went swimming I started swelling up and started to burn. I am a swimmer and that’s my dream. Since then it’s been 2 years. It’s gotten worse. When I went in a cold resteraunt about a year ago I got cold and told my mom but she ignored me, when we came out I was red, literally everywhere . When we went to a doctor, he said we’ll figure out before he does. My mom did research and found this disease. I don’t know if this will work for anyone else but for me Zyrtec has worked and I can swim when I take it. It’s only been 2 years and I don’t know how much worse it will get.
    Sincerely,
    Lilly

  286. Olivia says:

    Hi Claire my names Olivia I live in New York. I’ve been experiencing symptoms since I was about 5 years old, but I was diagnosed when I was 15 because no one believed I was actually allergic to the cold. I experienced an episode when I was about 10 from swimming in cold water that resulted in me passing out and having a seizure which I was then hospitalized for, but the doctors said must have been from dehydration. Meanwhile 7 years later I found out it was an allergic shock of some kind! Allergy medicine doesn’t seem to work for me but this allergy is honestly a daily struggle and it’s even worse because people don’t seem to understand and think you’re joking. I can’t ski without having a reaction and summer is supposed to be the break month for this allergy but then if the waters too cold I pass out so I’m terrified to even go swimming. I can’t eat or drink too cold of foods
    Or beverages. I can’t sit on cold surfaces or rest my arms
    On a cold desk without getting a reaction! Hell I can’t even hold a water bottle or drive with the air on my feet or hands without them swelling! I just hope It goes away and after readin some of these other comment I’m feeling hopeful yet also pessimistic that gonna deal with this my whole life and never get to experience things without putting myself at risk.

  287. Chantel Davis says:

    Hey guys,
    My name is Chantel and I also suffer from CU. I have been living with this disease for about 4 1/2 years now, and as you all know, it is not very fun. My flare up began as small hives on my arm after recovering from a bad case of strep throat. Since then the hives have continued, I also swell terribly in my hands and feet. Does this happen to anyone else? I have been taking cyproheptadine for about two years now. Although it has not cured this condition, it does help the outbreaks.
    I am terrified that I will never be rid of this condition. Does anyone have any advice on any medications or remedies for swelling and hive outbreaks? Also, does anyone know if this is a hereditary trait?
    I would love to hear some feedback from people. Each time I tell someone about this condition they either laugh or don’t believe me. It would be so nice to hear from people who understand!

  288. Patricia Simpson says:

    Hi Chantel,
    I don’t have medical advice except for avoiding exposure. I used to medicate daily but I spot and have focused on limiting exposures instead. But it’s relatively easy for me to do being in southern california. Not everyone has that luxury. I am not an expert but it seems this is an auto-immune disorder and I don’t think it’s hereditary. For a few of us at least, the disorder seems to have been brought on after our immune system was weakened by another disease. Mine was Parvo B19. My allergist said that people who have CU can often have what’s called general urticaria which is basically reacting with hives to a lot of different triggers. I know only one other CU person who has that condition and if we think we have it bad, meeting her would make you feel better. She gets hives with certain food, cold, certain air pollution, even with exposure to her own perspiration. It’s just nuts. Best of luck to you and try to stay warm.

  289. Trish says:

    This condition can be hereditary. My grandpa has it also, but not as bad as I do. I get the swelling in the hands and feet also, and sometimes have to walk around work without my shoes on. I take Zyrtec and Allegra, but they don’t seem to help much with the hives and rashes, which for me last for days. I live in Wyoming and have to wear several layers during the brutal cold winters. A lot of people think I am making this up or tell me to move to someplace warmer, however air conditioning affects me the same way and you can’t get away from cold.

  290. susie gibbs says:

    Hi Chantel
    I learnt from others on this site about a cream called Warmskin. Its not available in New Zealand where I live however I bought some online. It seems to do the trick to stop hives when Im out for a run in winter, in shorts and a short sleeved running top. Only my eyelids swell. Guess I should try glasses too. Good luck with the battle! cheers Susie

  291. Lois says:

    Hi Chantel,
    My allergist said most of the time it does stem from some hereditary traits that affects the nervous system in some way. For my mother, she breaks out in these circular welts around her body ( mostly arms) when she gets highly stressed and physically drained due to planning/ preparation of events. My allergist paralleled my mother’s breakout as similar to the hives I get when my body stresses out due to temperature shifts

  292. Amanda Inouye says:

    I have had CU for about a decade. I tried total avoidance at first but found myself breaking out if I sat on a toilet seat.
    I had a really hard time getting used to not enjoying winter sports and planning ahead. I have had great luck with Allegra or the generic equivalent. I need to be on it all the time though. Even a day or two break and I start getting reactions again from cool breezes. I carry Benedryl topical with me at all times just in case but haven’t had to use it much since I started the daily Allegra. I still keep a large box of hand warmers in my car just in case I become stranded.

  293. Karmella G says:

    Hello everyone, I too have cold urticaria I was diagnosed December 2016 how this came about is because for one I have always noticed I have been a little sensitive to the cold my skin would become really itchy and when warming up my skin would feel like it was on fire however paid it no mind time went on and with time I couldn’t stand it no more. I thought for a minute could I be actually allergic to the cold and then starting researching it did the ice test at home and it came out positive so then I set up an appointment with my allergy doctor and there it was confirmed I had cold urticaria! I took allergy medication for a good min but then that didn’t help so then started to research how I can Live a normal healthy life. I love winter and love all activities to do with being out doors I hated no being able to go places because of my cold allergy so if u also want a normal life without limitations please takes these under consideration. When going outside put on some warming lotion all over my skin including my face it’s called (warm skin) it shields your skin from harsh cold weather. Then I bought a heating jacket the arms, back, front of chest, hat and gloves are heat control so worth the money the name of jacket is called Ravean. The jack helps me so much it’s a light weight jacket that I can use anywhere and the battery life is great. My 3th precaution I use when I go out to the snow or I know it will be really cold I use this device that skies use so that they can breath in warm air va cold air it helps them to be able to perform better in their sports but me having cold urticaria it helps my lungs and throat to stay functioning perfect this device is called (LungPlus) this works wonders. I hope my information I provided for you guys helps you out because I know when I looked for help none was out there. So there is hope for us people who have this condition you just need to be willing to obtain these items. Good luck and God Bless

  294. Karmella G says:

    Another natural medication to take is apple cider vinegar (with the mother) add two teaspoons to your 8 oz of water once or twice daily this also helps build your immune system and helps fights all kinds of diseases and infections. I have been taking this and my cold urticaria is now very mild I no longer take allergy medications I rather go natural then to take the chances with other problems regarding long time use of. Prescription drugs. Hope this helps your guys too who are desperately seeking help…

  295. Michelle Armatys says:

    My daughter also has this disease and has the most extreme case you could have…She was born with it…It can be genetic…Her father has it and was also born with it…his father has it etc…I’d never even new of such a disease until I started dating him…She has and experiences hives every single day…we live in Tn,where it’s warm a majority of the time…and she still breaks out daily…some times she has gotten so cold that she will shake uncontrollably and all I can do is force her into a hott bath,and she will stay in there for at least a couple of hours until she feels fine and the shaking has stopped…she has even passed out on a couple occasions because she was so drained physically from being cold and shaking to getting warmed up….The first time she ever broke out in huge red hives,she was 2 months old,we were hoping it wouldn’t be passed onto her,but it was,she’s 13 know..She had an actual saliva genetic test done by a doctor in California who studies this disease and she obviously tested positive…She now has a 50% chance of passing it onto any of her children…And nothing has ever worked or helped medicine wise…absolutely nothing…we’ve just learned how to live with it and work with it as best as we can…but she understands what she has and takes care of herself,but we still let her participate in activities like swimming etc….I’m sorry to hear you also suffer from this…Michelle

  296. Scott Hasty says:

    I’m in my 40s and I recently began suffering with this about a year ago. I had no clue what it was and thought it was an allergic reaction to my detergent. I went to the emergency room and they were clueless as well and planted the seed that it might be my clothes detergent. Probably the same course of Investigation most people go on.
    Mine acts up in the mornings; if my feet get cold they’ll start to itch, and is worse if I’m working outside and perspire a bit then begin to cool off. The cool parts of my body begin to itch badly and I break out in raised hives. Sometimes this is over my entire body. Warming myself will reverse all symptoms within 30 min, but in situations where I can’t warm myself one Benadryl and sometimes two help greatly in reversing the symptoms. I don’t know if this will progressively get worse. Hopefully not. I don’t have any reactions to cold food thankfully.
    It’s very relieving and comforting to know there are other people out there dealing with this. I had no idea it existed.

  297. Scott Hasty says:

    My symptoms began almost immediately after taking Zyrtec for 2 years Daily. I’m wondering if anybody else experienced this

  298. Tammie says:

    I have it and so does my daughter. There are great support groups on Facebook. My daughter and I suffer from welts and rashes… not so much hives. You are not alone.

  299. Ellie says:

    Hi,
    I have had this condition for almost 10 years now (I’m 17) but my parents have said I’ve always had a quick reaction to cold even before this. My urticaria flares up a lot what ever time of year it is. I live in England so I mean it’s not the warmest place but even if I wrap up I still seem to end up with a rash sometimes. Just walking to college or a chill being in the room will cause most of my body to come out in rash. It’s extremely painful and itchy. I get it all across my body but I get it most on my face, neck, arms, lower legs and back. It comes up as large red welts and hives and the cold also causes my joints to swell up and my hands can triple in size to the point where my fingers have no gaps in between them and I have no flexibility. I can only go swimming for a short amount of time however I do tend to try carry on through the pain if I’m enjoying myself until I physically cannot any longer. It’s the same with sports as I’m a keen sportsperson and I try not to let my condition affect me but unfortunately it does. I was prescribed fexofenadine hydrocloride for about 2 years and for a while I saw a massive reduction in the times I would get hives. However it then began to stop working and I have been without medication for 2 years. New people I meet quite often laugh when I say I’m allergic to the cold until they then see the hives in real life. Lots of people also don’t understand quite how much pain I can be in from the cold sometimes and underestimate how bad my condition can be. I was wondering if anyone has any other treatments or techniques they’ve found effective. My doctors aren’t very helpful with it as many are just not aware of the condition. I’m trying at the moment to be referred to a specialist as after almost a decade I haven’t been offered that.
    Thanks

  300. Susie says:

    I’ve posted this before but just incase you have missed it.
    Our Mast cells that give out the chemical reaction take 24-36 hours to replenish themselves. So if you force a reaction under control ( maybe slowly over days??) to empty the mast cells, then if you have a cold bath or cold swim every 24 hours your reaction will only be the small amount that’s built up. You empty the Mast Cells every 24 hours then you can never have a frightening reaction as you haven’t allowed the buildup of chemical. Get it?
    Hey cold baths or swims everyday aren’t ideal but what’s amazing is, if there is something you really want to participate in, you know you can, using this method!
    It’s brilliant support having you all out there!!!

  301. Rick Crockett says:

    Had it for 20 years – but still swim in English Channel with wetsuit at Xmas and occasionally throughout year.
    Surprised there isn’t a cure – I expect there is good money to be made if someone figured this out. I doubt it’s beyond the ability of current scientists.

  302. Jennifer Winans says:

    My son has been greatly helped by acupuncture. His hives have gone down to small red dots rather than large white welts. The itching has gone way down as well.

  303. Mikayla C says:

    Hi everyone, I have had cold urticaria since I was about 12 and I am now 25. I am moving back to New Zealand in a few weeks after having lived in Australia for 6 years where it is much warmer. I have taken oral anti histimines for as long as I have had this condition and I am very very worried about moving home as it is cold in New Zealand and I have yet to find anything that helps me. I get hives everyday in New Zealand even if I’m wearing jeans when I have a shower my legs are so red and extremely itchy and have bumps all over. Can anyone please advise if they have tried something that helps reduce the reaction? I am willing to try anything. Thank you.

  304. deepa says:

    Hi,I have had this condition from childhood but didn’t have reactions until it’s really extremely cold. But lately I’ve been having reactions to temperatures greater than I had before, it’s usually when I sweat and cool off in cold temperatures. I’m looking to healing through a holistic approach. Has anyone tried or have had any luck with similar treatments??. I’ll update you all on if the treatment is effective for me.

  305. Michele Fitch says:

    I’m 63, have had CU over 10 years. Nothing helps, I can have itching and feeling faint in 70 degrees, if there is a cooling element in the environment, like a breeze or cooler water.

  306. Kristi says:

    I also have been diagnosed with this condition of cold urticaria. I live in southern Ontario, Canada. It makes winters brutal!!!
    My most affected areas are my hands and face. My eyes water in the cold wind and then I break out all over my check bones and under eyes with a very painful bubbling rash. The knuckles on my hands do the same if I happen to touch snow or a cold steering wheel in the car, for example.

  307. Brian Y says:

    I also have this. I first noticed it after swimming at a beach (Lake Ontario). The water was pretty cold but it was a windy day and I was playing with a body board.. it was fun. I noticed my fingertips starting to tingle and then hurt, and that my hands were swelling up, but I kept playing. Finally I came in because I could no longer make a fist. As my body warmed up, a whole bunch of welts/hives formed all over my body. My wife and I thought maybe there was some dirty contaminants in the water.

    A few days later I noticed the exact same reaction in my hand — swollen, along with stinging sensation on fingertips, but it was only just from holding a cold drink. At this point I hit the internet for an explanation, and came across some explanations on webmd and mayoclinic.

    I went to the doctor shortly after because I did the icecube test which produced the cube-shaped hive on my arm. My doctor seemed puzzled and suggested that it was Reynaud’s but as I’m sure many of you have researched, Reynaud’s also includes purple skin which I didn’t have. I still believe it is CU, not Reynaud.

    I’ve been worried as winter approaches but so far it hasn’t been too bad. The coldest day we have had so far was -15C. I layered up on clothing and when I went outside the only thing that was affected was my lips and my fingertips (even though I was wearing gloves). I have read that CU can be temporary and that’s all I can hope for.

  308. Janine Jagger says:

    I just came across this website and discussion which I was checking out for a different reason. Coincidentally I saw this discussion about cold urticaria and it is a symptom of the rare genetic disease that I have and of which I have involvement in the patient community. First, acknowledging that there may be different causes of the same symptoms, you should be aware of the possibility that this could be a genetic auto-inflammatory condition within the CAPS spectrum (cryopyrin associated periodic syndrome, NLRP3 gene) should be considered. There can be a wide variety of other inflammatory symptoms involving joints, mucosal ulcerations, and systemic inflammation. Other family members may have similar symptoms. There are treatments, particularly the IL-1 inhibitors like Ilaris. Another consideration that has had some success in auto-inflammatory patients is cannabidiol (CBD) which is an over the counter, non-psychoactive, very safe, legal in every state, compound of cannabis. This is a try-it-and-see alternative because it is non-specific and has a very broad spectrum of clinical applications. I suggest you check out this chart of the auto-inflammatory diseases and get an idea of whether your condition could be related to these disorders. Although CAPS symptoms are most obvious on the skin, it is a systemic inflammatory disease The issue is that there are treatments. We have seen some remarkable results in auto-inflammatory patients. Here is the link:
    http://www.nomidalliance.org/downloads/comparative_chart_front.pdf
    The above organization is very knowledgeable and very helpful. Best of luck. I hope this helps someone!
    Janine Jagger

  309. Laurance Chediac says:

    Hi!
    I have never been diagnosed, but did have this condition for at least 10 years before it started to disappear. I guess mine may be the Aquired Type?
    Today, it reappeared after a good 2 decades of being away 🙁
    I lost my younger brother to a heart attack while I was staying at his home, as well as a business and divorce in the last years, so could it be stress related?
    Yesterday, I craved ice cream sandwiches and had 2! Could it have been that?
    It is hard to say. I have never gotten dizzy while going through a breakout. I just felt my body getting super warm, itchy hives breaking out and my knuckles swelling into deformity 😢Tests are definitely in order.
    Love to you All xx
    Laurance

  310. Janine Jagger says:

    For those people who are seriously affected by cold urticaria and who have found no treatment for it, I suggest that you seek medical evaluation for a possible genetic cause that potentially could lead to a treatment. I left a more detailed message a few days ago but I add some details here. “CAPS” (cryopyrin associated periodic syndrome) is a genetic auto-inflammatory disease characterized by inflammatory manifestations triggered by exposure to cold temperatures. The CAPS gene is NLRP3 and there are several mutations identified in that gene. There may be other inflammatory manifestations such as mouth sores (mucosal ulcerations) and pain. The treatment is an IL-1 inhibitor such as Ilaris. It is an expensive drug and insurers usually demand genetic results before approving coverage. Discuss this possibility with your doctor. Because it is rare most doctors just don’t know about it. Connecting with the CAPS patient community is very useful – they have broad experience in treatment of the disease. You can find them at autoinflammatoryalliance.org
    Best of luck,
    Janine Jagger

  311. carol says:

    hi am from the uk and i have suffered this condition for 13 years. Although at the start it was mild with only affecting my hands and knees in cold weather. I was never diagnosed by a doctor until last year as am not a person to go to the doctors but would say on occasions to them i think am allergic to the cold, they would just laugh until i went to one of the older doctors who there and then said you have cold urticaria. He said it was rare and in the 30 years of him practicing he has never come across what i have. I was referred to broadgreen hospital Liverpool which i have been under for the last year taking 4 x fexofenadine 180 mg in the morning and 1 x montelukast 10mg at night. My condition has really deteriorated over the last 4 years and this year, i have had to stop eating anything frozen or ice in drinks as this made my lips and tongue swell. i sleep each night with a hot water bottle and when i get up in the morning just going the loo will make the hives come out on the back of my legs off the toilet seat. As i am on the highest amount of anti-histamines my consultant can prescribe i have now been referred to Salford Royal Hospital in Manchester. i have also had a cryoglobulin blood test / c3 and c4 antibodies blood test / full blood count and antinuclear antibody test i am awaiting results on these. I have been advised not to swim in cold water to stay warm which is hard in the uk even in summer. I also have been diagnosed with dermographism urticaria and aquagenic urticaria as well as cold urticaria will update once blood results are through.

  312. Eve says:

    Have you tried a pet heating pad on the toilet seat? I use one and it works great! Also try Lung Plus and Warmskin those will help you!

  313. Kim says:

    Hello from Portland, Oregon! I have suffered from this disorder for as long as I can remember but I have never been diagnosed. I am 37 yo. I have had episodes that range from minor to severe. It doesn’t have to be cold outside for my cold urticaria to act up. I get hives in 90degree weather if I am sweating and there is a breeze or if my clothes are damp. Only once that I can remember I had a severe reaction where I think I almost went into shock from swimming in cold water with shorts and a tank top on. Every doctor I’ve ever seen for anything has never heard of cold urticaria and asks ME what it is. I have had a doctor scoff at me before as if I had no right to write it in the allergy section of an intake form because “it’s not like it causes anaphylaxis, right?” I discovered what it was after I met my sister’s roommate who was experiencing a different form of urticaria caused by pressure. She would wake up covered in hives from lying on her mattress asleep at night. I looked it up and finally found a name for this THING I’ve been dealing with my entire life. It’s nice to hear from people who actually know what it is and can relate. Mine is not so severe that I feel like I need to take medicine for it, but I always bring a sweatshirt with me wherever I go – even in hot temperatures and I usually wear lot’s of layers when temperatures drop. Good luck out there!

  314. Michele Fitch says:

    HI! Love your response. I’m so sorry you have not been believed. I feel so fortunate that after my husband figured it out from the Web, I saw a local allergist who was very reassuring, and said it is not that uncommon. He had no treatments other than antihistamines, but I’m glad I have medical belief! Other than that, it is a complete drag, and I also carry many layers with me at all times, regardless of the temperature. I’m actually more comfortable in cold weather, because my clothes match the temps and I can be adequately covered. When it’s hot out, less clothing and air conditioning ruin my life! Best wishes to you!

  315. Maria says:

    FYI- it can cause anaphylaxis. My allergist cautioned me against swimming alone as there was a case where an individual with cold uricaria nearly died from the sudden change in temperature following a dive into a lake.

    I have been put on Cetirizine HCI (zyrtec)10mg and Ranitidine (zantac) 150mg, twice daily and my symptoms have improved greatly.

  316. Mel says:

    That happened to me!! It was a river, around 70 degrees. I broke out in hives.. waited a few minutes more to exit the water, and when I did I felt super weak. Sat down and almost blacked out. As I warmed up, my vision slowly came back but I still felt weak for a couple days! My allergist said it was cardiac anaphylaxis.

  317. Kathy says:

    Kathy, I have had cold utacarie ever since ihad a knee replacement seeing an allergist and am on zingular and zyrtec helps some but cannot go into a supermarket without having a reation ugh its awful.

  318. Peggy Thomson says:

    People with cold urticaria should make sure your medical team is aware of the condition prior to joint replacement surgery that utilizes ice as a post-op treatment. Following knee replacement surgery 4 yrs ago, I had a significant drop in blood pressure that wasn’t reversing despite the usual treatment of increased IV fluids. The nurse finally said, “You’ve got that weird cold allergy thing so I’m removing your ice cuff – and your epidural as well. I’m not even waiting for the doctor to call back.” After a period of time, my blood pressure stabilized and then began to rise to normal levels. We’ll never know which treatment was causing the blood pressure drop since each can cause it, but it’s worth making your medical team aware of it before surgery. Note: No one checked under the bandages to see if there were welts. In addition, I had had a saddle block so I would not have been aware of any itching sensations.

  319. Mary W says:

    Hello from snowy, cold Michigan! I have been dealing with this for only 2 years now. I just has another appointment with an allergists today and going to do some blood work to see if they can figure out if its an autoimmune issue. Good luck everyone!!!!! Mine flares up walking down the cold isles of the grocery store, wind and especially these cold winters! The burning is the worse!

  320. Clorice R. says:

    Hello. In 1990 I was diagnosed with Cold Urticaria when it just up and hit me at school. Everyone thought I was having an allergic reaction to something I ate. After a couple of visits, the doctor did the ice test on me and I ended up not being able to enjoy the things I loved – snow, cold air, swimming in cold waters, etc. For decades I thought I was the only one with this issue. I took Seldane until it became a restricted medication, then we tried different allergy meds until I could take one that wouldn’t make me fall asleep at school (and later work). It wasn’t until 4 years ago that I met someone else with cold urticaria! She then told me about the foundation and other resources. It blew my mind. The last time I had tried to look anything up (20 years ago) I couldn’t find much.
    Anyway, I did end up having to get an epipen at one point because I nearly blacked out one wintery day from the cold urticaria affecting my airway. I haven’t had one in awhile but after walking to work this morning and feeling dizzy I think i will attempt to get one this week.
    Has anyone had to have warmed IV fluids? They had to start doing this whenever I had surgery because my arm would start breaking out. I did have one doctor not believe me in the ER, thankfully it did not cause me to break out.
    Over the last decade I noticed that I tend to react quicker. I also noticed (this was awhile ago) that I get what one doctor called the cholinergic reaction, where I break out when I sweat even if it is not cold. Because of that, she dismissed my cold urticaria.
    Missouri winters are getting even colder so yeah, I think it’s definitely time to get this reevaluated and hopefully find some help. Going to see if I can get that LungPlus and WarmSkin for Christmas! Too bad the jackets for women are sold out (from a previous poster).

  321. crystal osmer says:

    My name is crystal and i live in vermont…i have been diagnosed with the same disease since i was little i cant eat or drink anything cold i cant be outside to play in the snow with my nieces and nephews i cant even go swimming like everybody else its hard to live with this condition because no one believes me when i tell them i have a big allergy to the cold

  322. Thaji says:

    Yeah I’ve got it too.It happens so randomly in nights,and my feet or hands swell up.My mom thought it was because I ate prawn.Now it occurs whenever I’m in air conditioned places.I get hives.Yesterday I came home from Colombo in an air conditioned train.The itch started and I ignored it and dozed off.now the hives haven’t cured as it had been 2 days.I am twelve years old

  323. Gina D says:

    I’ve had it since I was 24 years old in 1982. Diagnosed by the “ice cube” test after many other test for allergy and autoimmune conditions. My doctor’s remark when finally diagnosed was “be glad you live in the South.” Took Atarax to suppress my immune system when first diagnosed but didn’t change anything when I quit. Just made me feel like a zombie when on them! I mostly just avoid cold and occasionally take antihistamines when I have a bad attack after getting outside in the cold. I have it even in warm weather when I perspire, like cutting grass on a breezy day. Also had a reaction to an IV that was cool, looked like worms under my skin, had them take it out and use a warm one. I wish there would be something to reverse this condition but after this many years I’ve learned to live with it.

  324. Janine Jagger says:

    Gina,
    You may have a genetic disorder called CAPS – cryopyrin associated periodic syndrome. It belongs to a family of auto-inflammatory diseases. The mutation is in the NLRP3 gene. The most recent treatment advance that has shown good results are IL-1 inhibitors, particularly Ilaris (canakinumab). Observations within the patient community have also yielded some promising results. Since it has become a legal over-the-counter product in all states, cannabidiol (CBD) has been tried by patients with auto-inflammatory diseases, including some with NLRP3 mutations, with some impressive results.
    Janine Jagger

  325. Melinda says:

    Wow I literally just found out I had this when I was around 15. We were swimming in cold water and all of a sudden I had itchy hives all over my body! Then the following winter I had to buy a long coat because whatever wasn’t covered enough broke out in hives. It was mostly on my wrists, my hand, my butt and thighs. Sometimes when it was really cold my face was affected too. Mine is already gone now, I don’t ever get them anymore. It lasted for about 5-10 years maybe. Although I’m gonna google that ice cube test and try it 🙂

  326. Bernadette Dotingco says:

    Hello everyone! My name is Bernadette and I am from the Philippines. I have this Cold Hives ever since I was a kid. I noticed these whenever I swam on the sea, and when it is cold. This made me shun from swimming especially so when the welts became bigger, got difficulty in breathing and having headache afterwards. What we knew of was, we ( with my two siblings) got this from our maternal grandmother. Now that I am a mother, out of my seven children, three have this. My eldest child who is in the medical school had a grieve incident in their hydrotherapy class when she really took antihistamine for the situation.
    Basically, we would just avoid any cold exposures to prevent having the red patches, worse to have headaches. I couldn’t imagine staying in places that have snow.
    We are lucky to be in the tropics!

  327. Cynthia Lawrence says:

    I have been diagnosed with cold urticaria for around 10 years now. I live in the northeastern United States and have quite a collection of scarves, hats and gloves at my house (good thing I like to crochet!). Being that I teach in a 12 month program for medically fragile students I tend to get hives in my classroom on and off almost all summer especially if my clothes get water splashed on them. At first the allergist I was sent to thought I was allergic to water being that I was guaranteed a reaction if exposed to water and chilly air, but after testing with the good old I’ve cube test as well as submersion test where I sat in a chair and my arm was submerged in cold water with ice packs in it whereas I became dizzy and almost blacked out after a couple minutes. I do take chances I will admit. I take my children to the Jersey shore, if I go in the ocean before I bake in the sun, I can swim a bit. But once my body temp goes up from the sun, no more ocean-dipping for me. I keep a sweatshirt in the car for grocery shopping and a lap blanket for the movies.
    I have an Epipen, and I wear I medical alert ID which the nurse for my class helped me with the wording. I’m really not certain if what the protocol is to use the EpiPen, I fell like the time the reaction gets that bad, I won’t be able to administer it. For some hives and dizziness, I don’t bother. Never used it in 10 years.

  328. Secret says:

    Hello, I’m Secret and I have not yet been diagnosed with cold urticaria. For four years I’ve dealt with this but unfortunately we can’t seem to find a doctor to tell us exactly what I’m dealing with. We had noticed the problem when I went swimming for the first time in the summer, on the property we own. We thought there was something in the water. Until winter time when the cold weather got here. Does it get worse?

  329. Rebecca Nelson says:

    I’ve never been officially diagnosed, but have had CU for decades. At first we thought I’d been bit by a spider because my feet hurt horribly in the morning, but they felt better once they warmed up. A couple weeks later I had a some scary reactions while swimming in cold water that led me to figure it out.

    My sensitivity has stayed pretty stable my whole life. It changed slightly during pregnancy (I gained a whole 2 degrees of tolerance!), but went back to normal after my children were born. I don’t remember ever getting hives on my face until after they were born, though. I was hoping the hormonal fluctuations would “fix” me, but they didn’t. Oh well. Compared to the stories of others here, I don’t have it too bad, so I’m counting my blessings.

  330. Has anyone had success with the drug ilaris? I am on the Cold Urticaria facebook page and some people have said that they have had success, and I’ve done some reserch and it’s sometime used to treat Familial Cold Autoinflammatory Syndrome which is basically another form of Cold Urticaria from what I can tell from what I’ve seen. I am making an appointment soon to talk to my doctor about it, please let me know if anyone has had success or expereince with the drug ilaris

  331. Mandy says:

    Hello ive had hives now for 5 years can’t go out cold without wear undergarments or wrapping up properly it’s horrible and painfull can’t go swimming or nothing got mine though some bad seafood now can’t have that or fish 😦

  332. Erin says:

    Hello! I’m from Long Island, NY. I was diagnosed with CU when I was ten years old after having a run-in with Viral Meningitis. I am 26 now. Since dx, I was unable to go into the pool or ocean on excrutiatingly hot days and I’ve always had to take extra preparations when leaving my house during the winter months. I also suffer from asthma, eczema, and have numerous other allergies; so you can imagine the additional issues I have when I get flare-ups. I’ve taken many OTC allergy medications, I’ve also tried allergy shots. I have not been put on a long-term medication but I’d be interested to know what works for other people and what additional methods that people have used to cope with their symptoms.

    My only hope has been to move to a state with warmer weather. I’d also like to know what the organization has done for their lives?

    It’s fascinating to see how many people also suffer from this condition. I’ve never found anything like this before.
    Hope this helps!

  333. Kevin burke says:

    My first in counter with cu when I was 11 I grew out of cu when I turned 18 I’m 41. I lived on Benadryl when I did have cu

  334. Alannah says:

    Hi from Bathurst, Australia! I was diagnosed with cold urticaria when I all of a sudden started getting hives as soon as I would walk outside in winter. They would mostly come up on my hands, arms and legs. This only happened after I had my son, and around the same time I developed heart palpitations/panic attacks/physical anxiety symptoms (which is very unlike me, I am a very calm and chilled person). I was wondering if anyone else has experienced anything like this and if there may be a link?

  335. Katie Jones says:

    I have it. It auto-immune diseases run in my family genetics, but I also just found out I am pretty vitamin d deficient. Mine shows up when I am outside in the cold (I live in upstate NY!), use an ice pack, carry anything cold in my hands, use the air conditioner in my car, without pointing all the vents away from me. I can still eat and drink cold stuff, but I get puffy lips so I probably shouldn’t. I finally talked to a doctor about it yesterday and he told me to take pepcid and claritin together daily. He’s my new doctor and we just happen to be distant cousins. He told me that our family carries the gene that causes auto-immune disorders. I didn’t take any of this seriously until I got home from his office. Anyone have the kind of experience I have? Is this going to get worse? It seems like I am getting more and more sensitive the older I get. (I just turned 49.)

  336. Kayla says:

    Hello I’m Kayla, I too live in Ohio with this condition. I found out I had it when I was swimming as well. I was about 17 and I’m 26 now. I’ve been to the doctor for it but it was pretty much written off when I said “I’m allergic to the cold” followed by confused looks so I’ve learned to live with it. Today a shoveled my drive way then ran up to my room to curl into a ball and scratch my body like crazy feeling sorry for myself lol. I’d say my outbreaks become pretty severe and happen very quickly, it’s burns and hurt but it’s more annoying more than anything. Stay warm everyone !!

  337. Janine Jagger says:

    Katelynn Priddy has hit the nail on the head with her comments. Cold urticaria is a symptom, not a disease. The disease is a genetic auto-inflammatory disorder, cryopyrin associated periodic syndrome (CAPS). There is a genetic test for this – it is a mutation in the NLRP3 gene with autosomal dominant inheritance. The principal researcher is Hal Hoffman at Univ of California, San Diego. Here is a link to his clinical unit: http://raidivision.ucsd.edu/research/Hoffman-lab/Pages/default.aspx. Here is a bibliography of his publications on NLRP3: http://git.macropus.org/hubmed/?term=hoffman+nlrp3.
    The patient support organization most knowledgeable in CAPS is at this site: autoinflammatory.org. The only effective treatments for CAPS tested by clinical trial are the IL-1 inhibitors, Kineret, Ilaris, Enbrel. Insurance carriers may require genetic confirmation of CAPS since these are very high-priced drugs. This link is to an article on treatments for CAPS: http://www.tandfonline.com/doi/abs/10.1080/17512433.2017.1338946
    Not tested by clinical trial but anecdotally reported by some CAPS patients, a significant beneficial response to cannabidiol (CBD), a non-psychogenic, legal, over-the-counter therapeutic compound of cannabis. I add this piece of information because insurers sometimes deny coverage for the IL-1 inhibitors and those patients are left without treatment . The other situation is that an insurer can drop coverage of a previously covered medication at any time for any reason. CBD is non-prescription and does not depend on the approval of an insurer. I hope this helps,
    Janine Jagger

  338. Alice Lunn says:

    Hello- I’m Alice from England – East Yorkshire – I was started with CU when I was 16 but didn’t get a diagnosis until I was 18 -now 24 and my CU continues to get worse – each day is a battle with the cold tempesture- I have found medication that does help a little – I’ve learnt to live with CU and make sure to take a hat/ gloves / neck warmer / hand warmers etc everywhere I go! I miss doing the normal things like swimming’ and going in an air conditioned gym etc! My friends all think it’s hilarious when I have a little bit of ice and my lips swell – free Botox I say!

  339. Gina says:

    Thank you for your response . I just found these notifications, they have been going to my “junk folder”. I’m
    excited to read up on this.

  340. Claire Ashworth says:

    hi, im Claire. I live in Lancashire in England and also have this. Ive had it for as long as i can remember but wasnt diagnosed until i was 18, im now 30. I have antihistamines but always forget to take them! currently wrapped up under my duvet after a day in the cold…brr!

  341. Louise says:

    Hi I’m Louise
    I’m 14 and live in England.i have had cu for about a year and no one believed me even my mum until one day I had a massive rash on my face hands legs toes and fingers then my mum took me to the pediotrition,I am being referred to a dermatologist.life is hard as I have to commute to school and I have 2 other problems type 1 diabetics a auto amune condition like this one and a condition called hydro something which is not that common and it’s when you get hit easily but only certain parts so I can be cold and hot at the time.not a lot of people/dr know about cu and most of the times they will not understand what it is therefore you are suffering in pain,the best thing to do is be firm and say this is a problem and I need it sorted out.and mabey you will get media to sort it out.hopw you all have a good day 😊

  342. Teri says:

    Hello,
    Just found out 2 weeks ago I too have Cold induced urticaria. Living in New England makes for a bad situation!

  343. Destiny says:

    Hi I’m destiny and I get hives like these too but I’m not sure what causes them. I randomly get them and it’s not when I’m around anything cold. I have broken out into them badly once coming in from the cold outside but most of the time I’ll just be in the house and get a couple and they don’t hurt but they itch and go away after about an hour. They only come up on my face. Any ideas?

  344. Enzy says:

    Hi! I just found out that I have this as well. I’ve experienced the symptoms eversince I was a kid. I lived in the Philippines by the way so its a tropical country. But my hometown is cooler compared to some parts of my country. We have ice cold water in pools. I’ve had two episode where I black out after swimming. Learning from it now, I could have died. I talked with my doctor about it before and he told us that my blood clots easily when exposed to cold but after reading thru I learned about it more. I guess it isn’t so bad for me because I live here. My lips just gets puffy and hands as well when I eat, drink or even just hold a cold drink. My fear is that I wont be able to travel to cold places. I really want to experience snow… but I dont wanna risk it. I had a bad experience in a snow world in Malaysia. My face got swollen and had hives all over my body just within 15 mins of exposure in cold. It’s nice to get to know more about these. Visit the Philippines if you must! I’m sure your allergies is clear here! 🙂

  345. Busy says:

    Hello , I have had this condition almost my whole life , diagnosed at a young age. I’m 32 now . I have been through 4 pregnancy living in Montana and it can be scary ; but it’s about knowing your threshold and being prepared. People will not believe you ( don’t prove it ) my husband didn’t when we were dating 14 years ago and it was a shock when we went swimming together for the first time . Now for me 30 years ago they told my mom it was because I had asthma and there was no treatment at that time except to use my inhaler if I couldn’t breathe . So I have managed without any medication for this whole time. For me it’s about getting older and that our skin changes So going somewhere warmer eventually is the goal. It was quite embarrassing as a teen for me because anytime I went swimming it was ugly . And let me tell you I swear that’s all my friends wanted to do in a place where there isn’t a lot of activities. So my summers where spent getting red welts all over and trying not let anyone see. Now I had no idea they were life threatening until recently, at the time when I got this they thought it was a symptom of my asthma so when we decided to look more into it we read about a girl that went into shock and that’s when it changed for me. I have never had that happen . I’m very sensitive to air conditioning and even windy days. You will find me in sweaters in the summer if I’m inside and I only turn on the air conditioning if it gets into high temperatures and that’s only to have thing cool before it’s too hot in the house and the air conditioner has to run longer. I have worked out a system for when and how long to have it on. In the winter my cheeks have become more resilient to the cold and don’t seem to have much of a reaction anymore , just my cheeks but I’m bundled up to the nine if we go out even to the car. Being in my 30s I now would rather be warm then stylish but there was a time that style prevailed and I was freezing my can off and rashing out but remember I had no idea about this condition except that my body reacts to cold things and that was it. So Find those cute warm gloves and a cute super warm coat to avoid the unneeded discomfort . I wear a long coat that covers to my tall boots and that helps because I don’t wear under amour all the time. That can help and it’s not all that bulky. I have found finding my limitations has not only helped keep me in a nonrash zone but that there is so many way to live life to the fullest and sometime you have to get creative. Hope this helped. I have read all the posts and it’s nice to have found this. Stay warm !

  346. Gloria says:

    Hi, I’ve been living with CU for years . I didn’t have any issues with the cold as a child it wasn’t until my early 20’s that I delevop CU. I am now 42 and a mother of 3. I live Houston , Tx so the winters are not as bad, but still when the temps. drop I avoid going any where. I have learned to live with it although I wish I didn’t have this.

  347. Maria says:

    I was diagnosed with cold urticaria when I was about 10 years old. It first happened after swimming and we thought it was a reaction to a pool chemical but then it happened again that winter while waiting for the school bus. My pediatrician diagnosed it correctly the first time (yay!) but I was told there was nothing to be done about it. Just avoid getting cold. So, I suffered with huge, itchy, purplish welts mostly on my knees, elbows, and other joints for many years. It never got worse than hives — no other signs of anaphylaxis. I outgrew it by the time I reached high school and it stayed away for decades. One day, about 30 years later, I was at a chilly baseball game and my knees started itching. It was baaack! I’ve had a couple mild reactions since then but nothing like when I was a kid.
    Find out from your doctor if you should carry epinephrine (Epi-pen or Auvi-q) in case of a life-threatening reaction. It was never suggested for me but that was a long time ago. And invest in thermal underwear and long coats. I made it through those years wearing lots of layers in the winter and drying off and warming up ASAP after swimming in the summer. It was ugly and embarrassing at that age but I never knew back then that it could be life threatening. Scares me now to think of what could’ve happened.
    Good luck!

  348. Yasmin says:

    I’ve had cold urticaria since I was 13. I’m 37 now. I live in Montreal, Quebec so winters are hard. When I go out in -20C or below, I usually get very tired, like the feeling of just passing out. I normally sleep for 2 days straight. Swimming in cold water can do the same. Popsickles make my mouth swollen, and a cool autumn breeze will leave me covered in itchy hives wherever my skin was exposed.

  349. Georgia says:

    Hello Claire,
    I live Georgia and my daughter was diagnosed with it a few years ago. We too thought it was going to be a hard thing to live with, but it has been really not that big of a deal. We just make sure she dresses for the cold properly and really, just try to make sure she never has to be in it if at all possible.
    The main reason I’m writing though is this. We have been told this allergy is rare, but have found out that two other girls in her school have it is well. This is quite a coincidence. I’m beginning to think this allergy might be induced by some other means than being hereditary. I did the math and the probability for this is around .000006%. Anyway, I just wanted to let people know this as CU is still a mystery to the medical world and we should keep an open mind about where it is really coming from. Finding this out will be the best way of preventing and even reversing it.
    Best of luck to you.

  350. Lucy says:

    Hi I’m Lucy and I live in the UK. I first had cold urticaria when I was 12 and I got it when going outside in the cold/swimming in the sea and coming back in to the warm/inside. I get hives all over my body/face. It then went away and has come back 10 years later now that I’m 22. I’ve had it in the winter months of the last year and currently have it. I was prescribed an antihistamine from the doctor and that relieves most of the symptoms!

  351. Brooke Doman says:

    Hi! I’m Brooke and I found out I have this disease 6 years ago. It first began in one of my colder classrooms in 8th grade. I was wearing flip flops and shorts and was getting hives all over my feet and elbows, so I went to the nurse. Of course she gave me an ice packet, but after 10 minutes of putting the ice packet on my elbow a huge welt formed and I ran back to the nurse. She sent me home because she had no idea what it was. After this first incident, I went swimming in a cold pool and my entire body was covered in hives. My mom did more research and came across CU. Ever since living life in Chicago sucks!! I get uncomfortable hives all the time and it usually helps if I take Allegra or Benadryl. I’ve never really been to a doctor for it, but was wondering if that is something that will help or not. Thanks!

  352. Manpreet says:

    Hello

    I live in Toronto, and also have this. It is mainly when exposed to cold winds. It will get particularly worse if I am hot (from exercising, shoveling the snow, running after my infant son and so on) and step out into the cold. Hives will appear head to toe and then get worse and worse over the next hour. I take Benadryl immediately however, at times I feel light headed and feel the need to throw up. It typically gets worse before the Benadryl kicks in. It is SO awful! I love being outdoors and excercising. Unfortunately, this 15 year diagnosis leaves me feeling debilitating.

    I wish there was a cure!

  353. Nicole says:

    I am a 38 yrs old Canadian and I was never actually properly diagnosed with CU at age 12 when I suffered head to toe rashes after swimming and extreme temperature changes. I seen several different dermatologists and was told I would grow out of it. True enough my symptoms surprisingly improved.
    Fast forward to the past 2-5 years I am an outdoor winter runner and I’ve started to suffer from hives to my feet, hands and inner thighs off and on after cold exposure again. The past 6 months I’ve really become frustrated with the symptoms. I’ve been under a lot of stress and wondered if I had an autoimmune disorder of some sort so I started doing what all RN’s do….self diagnosing! I can’t believe that I came across CU information so easily on the internet and thankful that I now know what I’ve had all these years!
    What I’m curious about is have any of you come across a Physician or information that could explain why my symptoms improved throughout my teenage years and has recently gotten worse again? I’m wondering if it’s a coincidence that it’s changed will hormonal changes?

  354. Mmorg says:

    Hi, Claire!
    I live in Southwest Mo, and I too have CU. I was diagnosed 4 years ago after the traumatic birth of my youngest son. Doctors have speculated that during his birth I went in to some kind of shock, and that is what caused my CU. Although, of course, they don’t know that for sure. I was prescribed large doses of Zyrtec and Zantac to take daily and that does help with dramatic symptoms. I do still break out in the rash and itch in extreme situations (like staying in the cold or wind for long) but the sometimes hourly rashes from simply being in air-conditioning, sweating with workouts, holding a cold drink, etc are minimalized. I do also carry an epi pen as I have had an episode where I passed out and another where my throat swelled after a cold drink. I also just try to avoid these things at this point… My biggest tip would be to search for a dr who understands. I found an Immunology dr who has been a great help. She also is referring me to a Rheumatologist now as my blood work has started showing the effects of inflammation associated with CU. I wouldn’t say I am scared living with CU, but you definitely need to take it seriously. Get a game plan with your dr and change your lifestyle to stay ahead of breakouts.

  355. Manpreet says:

    Hi

    My doctor had mentioned that CU can disappear at some point and unfortunately return. She said it could be genetics but hasn’t seen that much research to support this.

    I know stress can be a factor with flare up of CU. Could that be it?

  356. Manpreet says:

    Hi!

    Thanks for the helpful
    Information. Just wondering if you or anyone knows if CU stems from some other diagnosis or disorder?

    What type of meds do you take other than Benadryl?

    Just returned from the gym and like usual..I started breaking out in hives all over. I hate that my lifestyle is compromised so much.

  357. deepa says:

    Hi,
    I don’t know the answer to your question but I have the same thing. I have had it since I was a kid, don’t remember what age it started but it was mild. Many years later, after two consecutive pregnancies and breast feeding it’s back again and worse than before. I figured it started the month after I stopped breast feeding my youngest and also I was going through a stressful situation. I didn’t understand it was my CU acting up since I have started reacting to cooling off after sweating if I’m in an air-conditioned environment, which has never happened before. I too think it has something to do with hormones and it is an autoimmune disorder. Just wish people would do more research and find out what’s causing it and how to stop it.

  358. Patricia Simpson says:

    My allergist had a list of diseases that are potential trigger to CU. I had just contracted Parvo B19 a few weeks before my first CU symptoms and that was on the list. I would think that if you’re immune system is compromised in some way, one would be more at risk to develop the condition. I have a good friend from Canada who had CU from her early teens to her 30s and it went away. Running with CU can be a total pain, even in the summer time. Cool breezes and sweat together is a definite trigger for me.

  359. Brian Y says:

    Hi everyone,
    I’ve been following this thread and reading everyone’s experience. It’s definitely an interesting and unfortunate ailment. I had it in August, and now I don’t have it anymore as of February. Which is great because we’ve been having a very cold winter here in Toronto.
    Hopefully, it doesn’t come back but it sounds like it might.

    What I find really interesting is that doctors don’t know a whole lot about it, my own doctor wasn’t even sure it was CU, he initially diagnosed it as Raynaud’s.

    Anyway keep up the good work guys and keep raising awareness!

  360. It is likely a genetic autoinflammatory disorder called CAPS – cryopyrin associated periodic syndrome. It is not autoimmune (which would produce antibodies against specific tissues). It involves a mutation in the NLRP3 gene. There is a treatment for this – it is Ilaris, an IL-1 inhibitor. A good resource is autoinflammatoryalliance.org.

  361. Megan says:

    yes!

    I have been looking for a community of people who like me, deal with CU on a daily basis. I live in Arizona so I feel like I have it somewhat good compared to others who live in more cold climates, but only found out i had it after i turned 20 or so. But while there are communities online for lots of other conditions, for this matter it seems more rare. Would love to know what fellow CU people are doing to deal with their condition, I know I wear leggings underneath every peice of clothing and long socks as well, but have not found the equivalent to that sort of prevention for my upper body quite yet. cycling spandex sleeves and a winter ski mask can be a great thing to keep in your car or purse to keep you warm in a pinch, as well as keychain pill holders with some claratin when you are away from the house, but would be nice to hear from others how they deal with it.

  362. Renee says:

    I am 50 years old and have had this for 20 years. I have always taken a daily allergy pill (zyrtec, claratin, alleges, xyzal) which helped somewhat. But I could never be exposed to temperatures lower than 70 F or I would get hives everywhere. I typically wear leggings under my jeans in the winter and wear pants and carry a sweater to put on in the air conditioning in summer.
    A few months ago an allergist told me I could try xolair, a biologic, which is an anti IGE injection, given once a month for chronic urticaria or for asthma. After the 4th month I was amazed…I have no more spots! I haven’t tried spending too much time in the cold but things that I normally got hives from (walking to the car, etc) no longer cause hives. I would really encourage everyone to check with your doctor to see if you can receive xolair…its been a life changer for me.

  363. Brittany M says:

    Hi, My son who is 6 was just diagnosed with CU. We just started on zantac twice a day but I don’t know what to expect. do I expect this to take all the symptoms away or just improve on them? It is very severe, and has come on very suddenly. He has never had it until this past 3 weeks. Im hoping we can find a solution as we leave in atlantic Canada and most days in the winter can be -28 with the wind chill. Has anyone heard of it going away? Dr seems to think because it came on so suddenly that it could maybe go away? but to me it just seems so severe im not so sure. He cant even go out for 3 mins without getting huge welts and red on his face it gets so itchy and hot, and even getting out of the tub and his cold hair touching is face makes his forehead swell and get red and itchy. Any help info support would be lovely. Thanks

  364. Claire says:

    Hi Claire! My name is also Claire and I have CU too. I started having bad reactions when I was 12 or 13 (27 now), but since I don’t live in a very cold part of the world, it wasn’t a huge concern. I hadn’t been formally diagnosed until November 2017, but i was aware that i had the condition and I was careful to take otc allergy meds before exposure. It started to get worse, as did some of my other allergies, so I went to see an allergist. I carry an epi-pen now, though it’s apparently unlikely to have an anaphylactic cold urticaria reaction. Not willing to take chances though, and having it with me gives me some peace of mind. I have also started wearing a medical ID bracelet, in case I have a reaction and it’s not immediately clear what I’m reacting to.
    It has been such a cold winter and I have been struggling more than usual. I am fatigued for hours after even brief exposure, even if I don’t develop wheals. I recently went on a course of prednisone, which really helped with inflammatory reactions, but had terrible side effects! I would not suggest using that if you have a history of medication sensitivity. However, it did help with reactions to cold and I have experienced fewer cases of hives, though I do still have fatigue and red, burning skin. Additionally, I have recently started Xolair, an asthma medication that has been approved for treatment of chronic urticaria. According to the clinical trial I read (I will try to find it and link it!), these injections (ugh!) have been overall very effective in treating patients with cold urticaria and can help lower the temperature at which patients have reactions. It’s possible that your doctor would be hesitant to prescribe it for an off-label usage like treating CU, especially since CU is rare and no one ever believes I have it. I would suggest going to your appointment prepared with copies of the clinical trials and pictures of your reactions, with time, date, and circumstance. I’m kind of a planner, can you tell? Xolair is given monthly by a medical professional, at a clinic or office, as it can rarely, but potentially cause anaphylactic shock at the time it is administered. After your first dosage, you’re required to stay at the office for two hours, an hour the second dosage, and half an hour for every subsequent dosage. Basically, it’s really inconvenient, but I’m willing to try anything to improve my quality of life at this point. It takes several months to start working and I haven’t been on it very long, but the possibility is really promising. I hope this is helpful and that everyone suffering finds some relief! Good luck!

  365. Nancy says:

    Hi Claire
    My name is Nancy, i am almost 62 yrs old and have suffered with CU for about 20 yrs. One doctor thought it may have been triggered from when i got frostbit as a child, my allergies and a weakened immune system from allergies and asthma.
    I will say it disappeared for several years and my health was improved then. It has come back in recent years, i am experiencing allergic reactions from different stimuli and having asthmatic attacks off and on.
    I started taking probiotics and prebiotics, vitamins. I have also contacted an Ayurvedic site about this condition. To see if a diet and supplements that they might recommend would help. What is being suggested across most medical systems is that auto immune diseases are caused by poor gut health.
    I usually layer to the hilt in our central New York cold weather, and carry even in warmer months something to cover up. I have found too,as suggested by my doctor, to cover the skin with an oil based product. I will take an antihistamine or at least carry them with me. And a bronchodiliatorto keep my lungs open.
    Its scary i know and hard to deal with at times. Kust always carry with you what works.
    Avoid what may trigger you. I have to layer just to go grocery shopping in summer…
    Hang in there

  366. Rose 🥀 says:

    Hey Claire ☺️ I’m also 18 and I live in Cleveland,Ohio living with this makes everything so difficult I can’t even go outside for longer than 5 minuets without breaking out and anything the Doctors give me literally did not work at all it only made me sleepy it’s so difficult to live here even on cool summer night I break out and I feel like I’m stuck I barely have friends because I can’t do the same things they do because of my allergies

  367. Rachel says:

    Hello! I have been living with CU since I was around seven years old. I am now 32 and my five year old daughter was recently diagnosed as well. Best wishes to you!

  368. sam shaving says:

    HI! I have been living with CU since i was 5. I just figured out what was causing it. I’m serious i found out yesterday.

  369. Jaslyn says:

    Hi there! Im 32. I’ve got acquired cold urticaria as well. I live in southern nh. I mysteriously enough, developed the symptoms roughly a week after an annual physical. The physical included receiving a MMR booster and my first (out of 3) Hep B vaccine on 7/22/97. I was 12 years old then. And, about a week after my appointment I went swimming at Hampton Beach NH with my family which we did frequently during the summer. When I got out of the water and wrapped up in a towel, my entire body became SO ITCHY and covered in hives. Life has never been the same. And, unfortunately, by the time dots were connected by my parents… there was nothing we could do legally, that would allow documentation that my cold urticaria was an adverse reaction from the vaccines.

  370. Brian says:

    Hi Claire. My entire life I’ve had merely a sensitivity to cold, but never CU until a car accident back in 2014 when I got a herniated disc in my neck. Now, anything below the neck suffers from CU. I hate living in the NE now. I’m longing for warmer climates. 🙁

  371. Nick says:

    My son which is 8 yrs old and is coming up with this now. It all started following his seasonal flu vaccine. It is now three months since and I find that it flairs up when he goes from warm ambient to colder especially when its also windy.

  372. MM says:

    My cold urticaria came on suddenly 7 years ago at age 30. I live in New England so it’s very tough. I’ve tried every antihistamine under the sun, Singulair, dapsone, immunosuppressants, and Xolair. Nothing has worked.

  373. Janine Jagger says:

    Jaslyn, What you describe closely resembles CAPS (cryopyrin associated periodic syndrome) it is a rarevgenetic “autoinflammatory” disorder – a mutation in the NLRP3 gene. It is very rare and most doctors are not familiar with it. The start of your symptoms after your vaccination is similar to reports of other patients. But symptoms of the disorder can be initiated by any immune system insult even a traumatic injury (which triggers a cytokine cascade) can initiate symptoms in a genetically predisposed person. So your observation has credibility but there is no specificity with the MMR and Hep B vaccine – it could have been any vaccine, an infection, or traumatic injury. The only “approved” treatment at this point would be the “biologics” Kineret or Ilaris. I suggest you check this out at autoinflammatoryalliance.org where they have expertise in this condition. I have an NLRP3 mutation which also affects thermoregulation but mine is the opposite – I am extremely intolerant to heat. But the important thing is that there is treatment. Check it out.

  374. I found out I had CU when I was 17(at the time I did not know. I haven’t been diagnosed yet but I’m 110% sure I have it. I can’t be in cold for a minute or I’ll break out!! Took food out of the freezer and my hands break out. I’m pretty healthy and can’t think of any reason why I would have this. I’m now 28 living in Wyoming and will be moving to Bozeman MT soon. Iv had CU for 11 years. I’d like to know anything that could help me!

    Sarahmdlc@gmail.com

  375. angela says:

    I’m angela, I’ve had CU sinse i was thirteen. I have a very mild condition and my breakouts range from small patches of his to nearly full body breakouts. I play soccer and i love it but its a winter sport and some days are tough, im 17 now and it seems like it’s getting worse. I’m scares for the future and im afraid it will be much worse in the future.

  376. Nick says:

    Hi Sam. I am struggling with cold Urticaria for 1 year and half. It came after having laryngitis. Could you tell me what was the reason of developing cold Urticaria. Is there a cure for this nightmare. Thanks

  377. Tawanda says:

    Hello! My name is Tawanda and I have been living with Cold Urticaria since I was 9 years old. I am now 31 and its gotten worse. Over the years I have tried controlling it by dressing appropriately for the environment that I was spending majority of my time in but that does not always work! It also does not help that I work as a Construction Manager on large scale projects so I am outdoors a lot and thats just triggers episodes especially in temperatures below 85. I live in Philly so the winters are not that bad but even in the summer I have episodes because of the air conditioned spaces that I am in. To be honest its a nightmare and I feel like medical professionals dont know enough to help! I get light headed my headt races and my hands feet and every other area exposed swell up and become extremely painful! I literally pray to God that I don’t pass out. My doctor has given me some antihistamines and recently referred me to an Immunology and Allergy specialist. I hope that they can help me. I also have a rare trait called Alpha Thalassemia and I am wondering if they are linked. Good luck everyone

  378. sam shaving says:

    has anyone had it when they were younger? I had and am wondering if it is bad.

  379. Secret says:

    I’ve had it since I was about 11 or 10, and I’m now 14.

  380. CReyes says:

    I also live in Missouri (Pulaski County area) and would love to know what immunologist you see. I had previously had an epipen from a previous provider but I cannot find any notes about it and my current allergy doc wasn’t sure why I would need one. I nearly had a couple of bad episodes this winter and had wanted to be prepared. I’d really like to see someone who understands CU. Thanks!

  381. Eve says:

    HI!
    I had it in my teens and 20’s and then it subsided for the most part, just a little here and there.

  382. Lu says:

    I had cold urticaria and I have cured it through a naturopathic diet. I first lost my voice and that was because my hydrocloric acid was low and that had caused silent reflux. I was always cold and I was getting thinner every day. The cold urticaria started with the cars air conditioning bringing up hives on my arms and torso. My body became very red and patchy with hives. Walking outside would bring up full body hives. Hot food plates on my lap also caused localized hives and redness. Doctors said take reflux medication for life which made everything worse. My husband found healingnaturallybybee.com and on this site I found the approach to heal my digestive issues that were ultimately causing all my symptoms. I make chicken bone stock from whole chicken. Cooked in a slow cooker on low for twenty-four hours. The bones should be soft when it’s fully cooked. Add juice of a lemon to get the minerals from the bone marrow. Refrigerate and keep the fat that collects on top. Drink a cup for every meal. To heal I had to give up flour based foods and sugar and temporarily give up fruits. I later added whole eggs and as I got well I ate well steamed vegetables with every meal. No raw vegetables because you cannot digest them. I ate meat grass fed beef and fattier cuts of beef such as Ribeyes. Meat helps make Hcl. I had previously been eating a diet high in raw vegetables. I needed to build up my Hcl but I didn’t add it as a Hcl pill. I allowed my body to make acid naturally through this diet. I sincerely hope this plan will work for you. I do not have cold urticaria symptoms any more. I have found naturopathic healing on many searches. I had to be very committed to my cure and I still eat bone stock daily. I gave up all cooking oil and I only sauté using coconut oil. Coconut oil was also a large part of wellness. I hope you will find this information helps you.

  383. Eve says:

    Is this by chance a cure for autoimmune disease?

  384. Aditya says:

    I live in India and have CU. I first had a hives outbreak on an international flight and couldn’t figure out what it was. It was really scary because I was on the plane for six hours and there was nothing that could be done about it. After a couple of outbreaks, I figured out it that the cold was causing the hives. Now I just avoid outbreaks by keeping a hoodie with me every where I go.
    English is not my first language, so I would like to apologise for any grammatical errors in this post.

  385. Lu says:

    Hi Eve, I have seen a list that included cold urticaria, interstitial cystitis, Reynard’s etc and they were all listed under the heading of digestive issues. The majority of our immune system is in the gut. I do still have Reynard’s and I wonder if I get back to the initial stages of the diet if that will also abate. Yes, I think naturopathic diets are helpful in boosting the immune system along with outdoor exercise and stress management.

  386. Eve says:

    Thanks! I have chilblains which is a ton worse than Reynauds, I have that too! Did you go gluten free at all? I do a ton of exercise outside and have no stress and eat well, do all the right stuff, I had a natural doc just say go gluten free…I haven’t though…

  387. Taliyah says:

    Hey! I live in Nebraska and I’ve had CU since I was 9 (now 14), I have no idea what caused it. It’s so cool to see other people with it, because it’s so rare and strange, I never thought of other people dealing with it. It sucks because in every season there’s something. I think I break out whenever it’s below about 65ish degrees.
    Winter.. duh,
    Spring-rain,
    Summer-pools,
    Fall-wind.
    It’s also incredibly weird to have to tell people your allergic to the cold, they don’t believe you! I honestly don’t even care if people believe me anymore. Screw ’em. I don’t think I even care about breaking out anymore, haha. If anyone wants to talk more email me.
    tinkwinn@gmail.com

  388. Erica says:

    I also have CU, I developed it in 4th grade and then it went away for about 3 years and came back in 7th grade. I am now 24 and still living with CU. I live in southern Ohio and this year especially has been hard. I break out in even cold air conditioned rooms. It’s awful but nothing really helps other than just getting warm.

  389. Bee Louise says:

    what caused it???

  390. Bee Louise says:

    I started getting CU at the end of last winter after a bad flu virus/stress. I am most prone to it in the mornings. I have never had hives or sensitized skin before (I am 40yo) and dealing with this on a daily basis has been a drag to say the least. This is the first forum I have ever reached out on and appreciate it so much because noone I know has ever heard of this including my doctor. I am going to start with neurolink (stopping brain triggering allergic response) and will post on here how that goes. Please, if anyone finds anything that helps or cures, share on this forum. I am finding it hard to accept this condition is permanent and searching for answers.

  391. Grace says:

    I also have CU. I was diagnosed when I was 7, though I’m not sure if I had it anytime before. I’ve had it for around 9 years now, however I live in a place that doesn’t get very cold year round. I’ve noticed that I have a similar reaction to hot packs on my skin. I’m glad to be able to read the experience of other people with CU. Most people think I’m lying when I mention it.

  392. deepa says:

    Have any of you tried supplements with Quercetin, Vitamin C, .I read it helps to reduce the histamine release.If you have, has it worked?

  393. deepa says:

    I would love to try something natural instead of the usual OTC medicines,so just wanted to know if any of you have had any luck.

  394. Nicole Meyer says:

    Hi, I’ve had CU since I was about 4 years old. Never knew what it was, family thought it was a weird form of frost bite (because my face would turn black, purple, and blue when I played out in the snow, but would go away after a few hours). Only actually realized what it was when I had it on family vacation (my younger cousin also has it and has been diagnosed with it). I did get an allergy test with the ice cube, and now officially have cu.

    Unsure if anybody else has experienced this, but it’s gotten worse as I grow older. Given that I am only 19, it has been quite progressive in severity since I was about 12. My symptoms can be from anything, but I’ve sort of gotten used to being in a constant state of cu, so it doesn’t really phase me when I get light reactions (swelling and some pain all over my body usually). However, when I get a more severe reaction, it is horrid. My whole body swells up, I get an intense fever, my body feels like I have pain from the flu, I can’t breathe, I get very dizzy and sometimes pass out (rarely), depending on skin exposed I get welts or the same black and blue blotchy spots along with intense swelling, and my joints and bones hurt soooooo badly I want to cry. I avoid swimming because once I went in a pool in may and I came out with huge welts all over my body.

    For me, it takes a while for it to go away. Also, sometimes it takes longer for symptoms to show up, and sometimes it’s instant. Depends on what I’m doing. I was running in the rain in the spring when at practice, and I almost went into anaphylactic shock. My throat was swelling up, body in pain, intense heat from body trying to warm up after, couldn’t breathe, etc. I should probably carry an epi pen, but I don’t. I do take antihistamine medications every day, and it does help, but it obviously doesn’t stop it. I’ve invested in a huge down parka that goes down to my ankles, and it really helps. I should note that I live in New Hampshire, so I’m freezing all the time lol.

  395. Ccdd says:

    I first had cold urticaria when I was twelve. It lasted for a month and then went away. Fast forward 23 years and it has struck again, this time after a nasty case of bronchitis infection. The symptoms are the usual, large hives all over my legs and face after spending around 5 minutes in the cold (anything below 60 F).

    I live in a cold climate, which makes it hard to cope. Antihistamines don’t really work for me, they just subdue the itch mostly but not the hives.

    Gluten free and low sugar diet is supposed to help a lot with cold urticaria. I’ll probably try that next.

  396. Mush B says:

    I developed CU when I was 33 and pregnant with my second child. I also developed IBS at the same time. As time goes on, I get it worse. My lips and tongue swell Along with breaking
    out in hives, skin swelling and nonstop itching.
    Last year I fell out of a kayak in the Pacific Ocean and had a terrible reaction. The group I was with was going to call 911. I’m sure I was in shock.
    I live in PA and am looking to move to a warmer state. I can’t take the cold any longer.

  397. Daisy says:

    Present! It’s such a pain to have CU. I always carry a pair of gloves, scarf, sweater and My new bff antihistamines. Glad to know there’s others with this condition! I don’t have it pretty severe though. I can cold drinks but can’t hold them for more than a minute. >_<

  398. Michele Fitch says:

    Best wishes with a move to a warmer area. You should know that even though overall, things might be better for you, it is hard to escape CU, no matter the climate. Air conditioning can be as menacing as outdoor air. I find hotter areas are worse, as I transition from outdoors to indoors, I have a reaction in AC. I’ve never found any relief, but just glad I live where it is usually mostly about the same temperature. (Santa Barbara CA.)

  399. Wendy says:

    I have had it for 29 years now. Officially diagnosed when I was 18. Started showing symptoms at nearly 14 years old. I live in upstate New York. I do not take meds as they all just make me tired & cannot function with them. I have learned to adapt over the years & some “reactions” as I call them are worse than others, and that can change from season to season, year to year, not sure why though…. I know when they are coming on & know “when to say when”. I feel moving anywhere warm, or when I vacation to warmer climates just makes my body warmer, so everything is just that much more cooler than body temp & causes the reactions, so things like air condition or just room temp bottles for example are that much more of an issue for my reactions, so I just figure I’m better off in a “cooler” climate so I can “control” my body’s interaction with coolness/heat more predictably since I’ve lived here all my life.

  400. deepa says:

    Hi Wendy,
    I also feel the same way you do,about going some place warmer and then even a slightest bit cold would trigger my reactions. I kept wondering if I was better off living in the cold climate despite everything. Hopefully it’ll get better in time. Let’s hope for the best

  401. Kathie says:

    Wow, I sure don’t have it as bad as the rest of you, and am able to manage it. If I notice it coming on from being out in the cold air or sitting on a cold chair for a while, I will throw on a warm coat or something to stop it. If I don’t do it in time, I’ll start itching like crazy, and will go to my bedroom and quickly peel off my clothes and scratch for a minute or so, which stops it. Only once have I had hives, and that was from not stopping it soon enough. Mowing my yard on a hot day, then coming into my A/C house could be murder (itching all over) till I learned to throw on a heavy, warm sweater or coat right away. I would keep it on till I cooled down. I don’t mow any more. I wear plenty of warm layers from my chin to my feet when I’m going to be out in the cold. I take a blanket with me to the movies in the summer. I turn up the heat to warm the bathroom before I take a shower. I’m 80 and have had this for several years. I went online to find out what was going on, because my doctor didn’t know. I live in Columbus.

  402. I have CU and I am having a very bad flare up currently. It has lasted 2 weeks as of today. It has gotten so bag that I had to leave the grocery store Sunday because the meat department was to cold for me and I felt like everything was closing in on me. I can no longer have the fan running at night because it increases the hives. I am seeing an Allergist today because Cetrizine and Benadryl no longer work for me. I live in Columbus Ohio and the weather has been off this year and colder than usual and winter has lasted longer than usual. I feel like I am completely defeated at this point and trying hard to push through this. I have had UC for 10 plus years and this year has been the worst yet. I am scared because it seems the smallest cool air now triggers it. It does not even have to be super cold. It was 60 degrees here Sunday and I could not go outside. I had to stay inside with 2 layers of clothes under a blanket.

    If anyone has suggestions I am open.

  403. Linda says:

    Hi,
    I never knew or heard of such a condition until experiencing it for past year and a half.
    I can’t find a doctor that knows much about it. Hardly anyone takes me seriously until they see my rash and hives. It’s horrible.
    I need to find a specialist. Help, anyone out there that can recommend a competent Dermatologist and Immunologist?

  404. Geenie Jensen says:

    Hi Claire,
    I live with cold urticaria myself. I hate it. I live in the warmest climate in Texas and I still have to bundle up in hot weather. My cold urticaria is similar to yours but different in the way when it comes to drinking cold drinks or eating something very cold. I do have to be very careful when I drink something cold so my throat doesn’t swell, my body becomes cold and the hives appear. What makes my situation even rare is that I have to have benedryl before surgery due to the IV fluids cause my arm to turn red and itchy where the IV fluids go in. I am cold all the time even all bundled up. I carry benedryl and an epi pen just in case. Hopefully one day they find something that can at least make our symptoms more manageable.

  405. Rebecca says:

    I’ve had this for a couple years now. I first noticed it when I would go outside in the winter and my legs would start to itch terribly. Last summer I took a Benadryl and thought I’d be fine to go tubing up the river. I was in the water a few minutes and my whole body turned red with hives. It’s such a pain not being able to do normal things. I live in Wisconsin so its cold most of the year.

  406. Jay says:

    Hi everyone! I haven’t read all the comments but I will. I’ve have cold urticaria since I was about 7-8 years old. My parents and doctors always thought I was allergic to pets. As year went by I started to noticed I would get cold while other people weren’t as cold as me. Most people thought it was because I was skinny! Such a myth. But I started to do my own research and diagnosed myself with cold urticaria. As an adult now I learned to manage this but there are times I hate it. I think it’s time to go to the dr to be officially diagnosed and treated. The past times I went they haven’t done much for me but give me allergy pills. Over the counter stuff. It sucks because I can’t swim too long. It can be 90 degrees out at the beach and just the cold beach water or wind will make me break out. I found that during spring is the worst fall too. I wish there was more awareness to this. I’m so glad to know I’m not alone and I hope to get in contact with people struggling like this it would be nice to talk to you guys. I’m from California.

  407. Tina says:

    My parents noticed that something was wrong when I was 2 n we went swimming n I broke out all over I was rushed to the hospital but by time we got there the hives were gone n the doctors weren’t sure what had caused it they finally realized it was due to the cold I am now 35 n I’ve read that if it starts at an early age u usually grow out of it but I haven’t if the temperature drops below 70 degrees I will break out and nothing I’ve tried other than avoiding the cold works I wear a sweater almost year round n I live in Alabama

  408. Bonnie says:

    Hi my name is Bonnie, I live in New York and have had CU since I was born. The hives were a mystery to my parents and why I’d have them until I was a teen and swam in a cold pond. My body temp dropped significantly, breathing was difficult and hives covered my body. Thankfully, my symptoms subside on warming up. But I am 36 now and it seems that I am becoming more sensitive. Do any of you feel completely exhausted and beat up after a reaction? I went for a run this morning and got hives on my legs and the air was cold, so breathing in the cold air made me feel awful. It really is annoying and depressing when you can’t swim in the summer or sled in the winter with your kids without experiencing complete exhaustion for the rest of the day. I found it comforting to hear people know how I feel, but sorry you all deal with this issue also.

  409. Jessica says:

    Hello, my name is Jessica and I realized I had a problem as a young teen (13-15), so about 20 years (yikes). I remember I was noticing breaking out in hives when I was cold and I was concerned. I told my mom and she said next time I go for my annual check up to let the Dr know. I remember telling the Dr and the response “stay warm” almost as if it was comical.
    I started working at a grocery store at 16 and I remember doing carriages in the rain or the winter and coming inside with a face swollen with hives. People always thought it was funny, maybe because they had just never seen such a thing before. It certainly wasn’t funny to me. Even to this day when I mention it, people either think I’m making it up or exaggerating or joking.
    I’ve only had a couple of really bad incidents luckily. One time, I went to the beach after not having been swimming in YEARS. It was early summer so the water was still extremely cold, but it was the first super hot day. I remember swimming and thinking it would be okay once I got used to the water. It wasn’t until I got out of the water that I noticed my whole body was covered in hives. I got shaky and nauseas and felt like I was going to vomit and pass out all at once. I just laid there on the towel unable to move. I finally made my way to the bathroom to change and I sort of collapsed on the floor in the bathroom stall and laid there a bit longer thinking I was going to die. For years I thought it was heat stroke or sun poisoning. It wasn’t until maybe 7 years ago when my mother saw an article in the newspaper and realized that my problem had a name. I googled the symptoms and everything made sense.

    Luckily I don’t have it as severely as some of you. I can drink and eat cold things. If I carry something cold for too long in the grocery store, I get a welt where it was and small hives around it. Washing my hands in cold water, or not fully drying off in the morning after a shower always get me. AC anywhere blowing directly on me is a sure to make me break out. I live in near Boston, so it can get very cold here, so I just make sure to bundle up outside and I am usually okay.

    Recently, my poor fingers have been breaking out just from being in a room that is slightly cold and I am wondering if it’s getting worse. I was never THAT sensitive. I’ve always been someone that runs cold and that is something else that I have been wondering about. Does CU affect us in a way that makes us more sensitive to being cold? And weight definitely has nothing to do with it. I am overweight and I am generally ALWAYS cold. I also use a space heater at work because I sit directly under a vent and the AC is always on.

    Sorry to ramble on and on. It just felt nice reading what you all have to say and being able to relate, not feeling so alone. It’s comforting knowing that you are all out there.

  410. Bill says:

    I have CU that started to appear when I turned 50. It has gotten worse over the years. I first really took notice of it when pealing potatos for mashed potatos. I would get hives all over my hands and they would itch like crazy. I live in Michigan and when I went out during the winter to shovel snow I noticed my thighs would be beet red swollen and red when I came in. Then in the past 3 years my face started getting red and noticeable large hives. I wear a face mask or scarf when the temperature drops below 45 F. In the office, when I wash my hands no matter what the water temperature is, and come back to my cubical my hands break-out in hives when a breeze from the AC hits them.

  411. MLC says:

    Hi. I have cold urticaria as well, and I live in Chicago. For me, it is more about temperature differentials. I always end up in hives after exercise, because of the sweat on my skin causing it to cool faster. In any case, I don’t have a problem eating or drinking cold things. You might ask your doctor if Xolair could be an option. Since you have such a severe case, you should definitely have an epi-pen, too.

  412. Cj Smith says:

    My son has had cu since 3rd grade. School nurse thoughts it was chicken pox until the welts started to go away as he warmed up. They made kids go outside in 10 above O weather. We found out he had cu from Las Vegas pediatrician, while on vacation. He went into the ocean up to his waist, after about 2 minutes he turn to me and said I feel… and that’s when he collapsed. Family members carried him to a car, changed his clothes, blanket on him. I noticed his feet and legs were absolutely huge. Found out the his blood pressure dropped dramatically.
    He is now 20 and sleeps in a room that is in a basement, which I think is now attributing to his insomnia, headache, anxiety, body aches. His orthodontist was also a sufferer if cu but recently told me that he took meds for this for 41/2 years and now it gone! He gave me the name of a Dr in West Des Moines, Is, where I live. He also said the Dr. knows everything about cu, most drs. never even heard of the affliction. That has been a big problem. I have the info for this Dr at home and I not there right now. I promise to get this info on here as soon as possible

  413. deepa says:

    Hi,
    I live in the same area as you do. Could you be tell me the doctor you were suggested for cold urticaria.i suffer from the same and would like some answers. Thank you.

  414. Senzeka says:

    I’ve started to noticed CU in my teen years, I live in Durban (South Africa) the most warmest city. I am now 27 and my mother still worries about my rare skin condition, we’ve never heard of it until I’ve met a young lady who had the same condition as mine as we both tried to figure it out, luckily I can drink and eat cold foods but never swim or take cold showers, my skin would quickly develop hives, itch with a burning sensation, I try to keep warm during winter but sometimes it would be impossible, even though I try to explain my allergy to friends they would think I’m kidding until the day I demonstrated with a cold box of milk, placed it on my arm for about 10 minutes and boom everybody went silence, I try to keep warm as possible, but unfortunately I can’t swim with my daughter as she is too young to know I suffer from CU.it has become worse over the years and I’m disappointed to the the fact that I would never be able to relocate to other cities in South Africa as they are extremely cold during winter.Sometimes I would feel sorry for my colleagues to work under warm temperatures as I’m always operating the air conditioning,My name is Senzeka and I’ve learned to lived with my skin condition over the years.

  415. Gina says:

    I have this as well. I live in Chicago area. I’m miserable and antihistimes don’t help. I read that this is a very rare disease effecting 1 in 100,00. I can’t help to think there is a commonality in all of us that might better help treat this disease. I’m sorry we all go through this. It’s hard because cold can be avoided sometimes. It’s very different from any other allergy.

  416. Crystal Penaloza says:

    I am so happy (I know I should not) to know that I am not the only one suffer CU. I have had this issue since I was 7. I didn’t know what was until I was 18. I am a chinese, so I know the name of CU in chinese not in English, When I visited my doctor one day, she did not know the medical name or treatment too. She told me I need to show her the hives, but the time I got to her officer, the hives were gone. Hives was all over my leg and thigh because I decide to wear shorts in the school. These hives scared my teacher, so I went home early and went to doctor office (30 min drive). Doctor never saw my hives so it never got proper treatment.
    It bothers me so much. I have to wear lot of clothes in the winter; can’t go to beach in May, have to go to beach when the weather is warm without cold wind; have to carry a jacket or coat with me during the summer time. I even wear a coat at work in the summer when 101 outside. Worst, i would get hives when I go to restroom and sit on the toilet too long. (this drives me crazy)
    I don’t know when and where I will have hives, I want treatment, I need treatment. I can’t wear skirts or thin layer clothes in summer if indoor temperature is low. Now I live in Central California. The morning and night temperature is very low, but daytime can reach 101 in summer, I hate to carry or wear coat in the summer. I hate to scratch myself in front others, but when it’s itching, I can’t stop touch my skin.

  417. Molly says:

    Finally people who understand what I am going through! I am now 37,but at age 10 my family noticed something was off. I was swimming in ice cold water and when I got out. I felt really sick, nauseous, and very weak. People thought I was exaggerating until it happened again and again. I would get into a pool that was super cold and my body would go into shock. I would throw up and not be able to recover for a few days. But there was no name for it and we thought it was strange. I went to water parks in fear but I wanted to have fun like the other kids too. Several times, I threw up and had the paramedics called.
    One time at the water park, I was in cold water but I felt fine. I was having fun. However, once out, I told my sister it was happening.
    If I go in ice cold water, I will faint, throw up, lose sight of my eyes. Well, I can make out the images but it’s bright lights. I read now, that my body goes into shock. You can die from it and that’s how it feels. My blood pressure drops, I get so weak I faint.
    It is such a scary feeling. You get so weak and barely can talk.
    One scary incident happened when I was 13, I was swimming with my friend. I got out cause it was super cold. My body was itchy, I became nauseous, I felt weak. “Oh no, I told my friend. It’s happening I have to leave now.” So I get up and I am so weak that I dropped on my knees and fell face first and laid there. I heard people, but I was so tired and I begged them to leave me alone and let me sleep. I chipped my tooth. I landed straight on my face. They picked me up ans I could not see anything but bright lights and images but I did not see colors. I threw up over and over. The paramedics asked me to squeeze their hand and I did. However i was so weak and did not squeeze hard enough. So I was taken into an ambulance.
    This kept happening until I was in my late 20’s.

    To this day, I avoid ice cold waters. I still itch in the cold but I don’t get hives anymore from snow or cold conditions. I still itch and get rashy skin. I avoid cold swimming pools. I would love to go white water rafting but not in my lifetime. I don’t swim in lakes, oceans, or pools with ice cold water. I should carry an epi pen just in case, but it is fine unless I go in ice cold water.
    . To this day, people say yea right when I tell them I’m allergic to the cold. I educate them. It’s a serious condition. Everyone around me knows how serious it is. We knew it all along but there was never a name for it. It’s gotten better, like I said I don’t get hives in snow or rainy conditions. But I do itch and get red on my skin.
    Thanks everyone for sharing your story!

  418. My 7 year old began showing signs of CU last summer after swimming in cold water. I thought it was the chlorine until he came in from outside on a cold day this winter with the same hives all over his face! He gets hives all over, but has never had any other systematic reactions. The pediatrician just gave us cyproheptadine to see if that helps. We haven’t tried it yet, but I’m hoping it will help. My main concern is that he will go from having just hives to suddenly having problems breathing? Has anyone had that happen? I’m just wondering if you just get hives then is that the only reaction you’re likely to get or does it sometimes get worse. Thanks!

  419. Jenny K says:

    I have the same experience as Crystal Penaloza. I’ve had this since I was 5. I went to different doctors but was left not properly diagnosed, believed nor received treatment. It came to a point that I was afraid to go outdoors. I do take OTC antihistamines as it help but cannot drive the next day as the effect of that medication lingers in my body longer than normal. Now I am 46, I cannot even touch anything cold because my palm gets so irritated, itchy and red after five seconds of touching something cold. I am still in search of the right physician to help me at least manage this rare disease.

  420. Shelley says:

    I’m 46 now and have had CU since I was thirteen. Luckily I can eat and drink cold things, but I’ve gone into shock and have had to go the hospital twice—once after water skiing (wind + wet is the worst) and once after swimming in very cold water. I have small reactions all the time, like when I start sweating a bit when walking our dogs—my body where I sweat breaks out in hives, or if I hold something cold, like a drink, for too long. One thing I’ve learned only recently is that wearing a wetsuit is incredibly helpful with swimming. I feel a little silly doing it sometimes, but I was actually able to go snorkeling in the ocean with my kids for the first time. Also, like a previous poster, I’ve had a reaction to IV fluids because they’re usually stored in a fridge. However, for subsequent procedures I asked that the fluid be at least at room temp and that solved the problem. I’m not sure all the medical staff even believed me about this allergy, but I’ve learned to shrug off the disbelieving looks and advocate for myself. Fortunately, I live in California, so winters are pretty mild, but when I would bike to school in cold weather in college my face would become so swollen that my eyes would almost swell shut! I remember hiding in the bathroom before class praying for my face to warm up so I would look normal.

  421. Tbon says:

    Hello I would also like the info, thank you!

  422. Leta says:

    I have had CU for the past 7 years. Mine initially when I was walking across grass with dew on it. My condition is gradually worsening. I can no longer tolerate cold drinks or temperatures under 68 degrees. I am on a large dose of antihistamines that are not effective. I live in rural Northeast Texas . Most doctors here have no idea how to deal with this disorder.

  423. Eric says:

    I have it, it started when I was about 8 and I am 45. Claritin helps quite a bit, if I can remember to take it a few hours before I swim or go outside (in winter). It’s annoying but doesn’t affect my life as much as it did when i was younger.

  424. Véronique says:

    Hi Claire! I live in Montreal, Canada, and found out a couple of months ago that my second son (out of 3) is suffering from severe cold urticaria, just as bad as you do… We got the diagnosis confirmed yesterday and came back home with an Epipen but I just can’t support the idea that he’s gonna have to deal with this his entire life. I just can’t. I got to find a solution. Please let me know if you hear of a new study, treatment, etc… He’s only 10 and I’m struggling with the idea that one day he could suffocate from drinking a simple glass of juice. Last winter was terrible here, with temperatures often falling to minus 30-40 Celsius. He would wake up almost every morning with stomach ache and /or headache and as a result missed a high number of schooldays. Summer is terrible to cause in these days of heatwave there’s no way to refresh him. To this day it was still possible for him to drink cold liquids or eat ice cream and all but recently he got pain in the chest and a little difficulty with breathing for about 15 minutes after drinking a juice out of the fridge, so we got told that this could potentially lead to anaphylaxis really fast in the future and that it was recommended to avoid everything that’s cold… When I think about it now I can relate this to a couple of symptoms starting from his birth when we had to keep him for hours in “skin to skin” position as he wasn’t able to keep his body temperature high enough by himself. Then as he grew up I couldn’t stay outside for a long time with him in the winter, he would react really strongly to the sensation of cold on his hands and feets, crying very loud, nearly hysterical, really faster than all other kids. Then we could see him with swollen lips very oftenly whitout being able to find out what was causing this reaction. Then arrived the stomach aches wich we consulted a doctor for but nothing came out of the different tests… Then one day he went to the public pool with his class at the end of the school year and this time, even if he never had any issue with cold water before, he got close to lose consciousness. After less than 5 minutes in the water he got all warning symptoms of eminent anaphylaxis: strong headache and earache, nausea, troubled vision, low pressure, excessive paleness and weakness… It took 45 minutes for him to get back to normal. To this day I don’t understand why the pool’s staff didn’t call the emergency services, that could have been fatal. Still, we couldn’t figure out what was going out, thinking it was probably a weakness due to deficient nutrition. So I got him a family doctor and settled for a second battery of health tests. We got the answer during an abdominal echography: the simple cold sensation of the doppler on his belly caused him instant geant hive… Now everything is confirmed on paper, we got the medics, but that’s not enough for me: I gotta find a solution for him to live a pleasant kid’s life.

  425. Alyssa says:

    I’m 25 and have had it since I was about 3, it’s actually hereditary and since a few people in my family have had it, it was easy to detect. As a matter of fact my younger sister developed it as well when she was about 16, we do think however she has grown out of it. It’s not as severe as it could be for me. I can drink cold drink and eat ice cream. However, I have noticed that if ice cream is extremely cold I do breakout on my lips. If I don’t take the right medicines that I’ve found helps me, I can’t go swimming or do anything else that will make my body feel remotely cold for too long without breaking out. Swimming is a big one though as I too have gone into shock when I was about 6. This was before we were able to educate ourselves a bit more to know that we had to take extra precautions. All of my family is well aware even now to keep an extra eye on me when we’re in water. The best remedy that I’ve found is taking 1 loratadine (claritin) I use the generic brand since I use it so often and it’s cheaper and I when need extra help like when I swim or during the winter when I know it can get really bad I take 1 loratadine and 2 fomatidine which are just over the counter acid reducers. I don’t know what it is about that combo but I’ve been using it for the past 7-10 years, a doctor told me once to try it and let me tell you in helps. I don’t worry when I swim that going to break out, I’m able to enjoy winter a little more instead of being miserable. However I due use the term winter lightly since I do live in Texas and we only get about a 2-3 week “winter”. Well, I hope this info helps someone!!

  426. Jill says:

    Hi! Trying to figure out if my 9 yr old daughter has this. She doesn’t get the hives but she can’t play in the sprinkler or at the beach because her hands and feet start to hurt (burn, itch, swell, and get her red). Do you always get the hives with this condition? Thanks for any feedback!

  427. Kate says:

    I found out I had CU when I was 16 and am now 21. I can drink cold things, but my tongue does swell up when I eat cold things. I can’t go swimming, be outside when it’s windy, etc. I started Xolair shots in Feb of this year and they have helped tremendously with my CU. Yesterday I went in a lake for the first time in over 5yrs. I got minor hives after being in for and hour. My body is immune to over the counter allergy pills from taking them everyday for how many years. Anyone that’s has CU, I would HIGHLY recommend talking to your allergy doctor about looking into the Xolair shots. They are spendy, you get one shot in each are that comes out to roughly $3,300 each appointment (2shots) but Xolair DOES of a program that you have to apply for for financial help since they are so spendy. My shots get done once a month, my CU is pretty severe, but it all depends on what your allergy doctor recommends!

  428. Katherine says:

    Wow, I am so sorry you all are dealing with this. I had a terrible reaction, completely out of the blue, about 15 years ago, when I went swimming in the ocean to retrieve something I’d dropped off our boat. I was about 50, had been swimming all my life, lots of it in cold water, and had never thought twice about it. By the time I made it back to the boat, I thought I was going to die – the nausea and complete systemic weakness, with swelling all over. I could barely speak but I sent my daughter off in a rowboat to get benadryl. It took me nearly an hour to recover. I really didn’t know what I was dealing with – everyone said hypothermia, but the symptoms were wrong, as you know. But I started to get hives when holding cold things and finally figured it out. I guess I am really lucky, because after about a year or so of having to avoid contact with cold items and stay out of the water, the urticaria faded away entirely. It’s good to know others are aware of this, but I wish it would fade away for all of you too.

  429. Carol says:

    You should look into mast cell activation disorder or mastocytosis. https://tmsforacure.org/
    For the family in Montreal there is a Pediatric allergist/immunologist in Montreal @ McGill whose area of specialty is chronic urticaria. In Canada xolair can be covered by provincial health insurance.

  430. Mo says:

    I have had it since I was about 10. I’m now 37 and it got better once I was in my teens. I would break out in hives all over from the snow. Back then people would laugh when I told them I was allergic to the cold. The doctors really did not have answers. But me and my family knew it was due to the cold. I have had many scares too. I first noticed the scary symptoms while swimming. I threw up, and got really weak. When I was 13, I went swimming and fell on my face because I passed out due to being weak and theyvalled an ambulance. My body was shutting down.
    This was not the last scary incident either. So you’re not alone. It feels so scary too.

    My symptoms after swimming in cold, cold water -nausea, weakness, blurred vision, cramping in belly, blood pressure drops. It feels like death is right there.
    I have not had a scare since I was 23. I just avoid cold, cold swimming pools. It has to be super cold like ice, if that happens I’m in big trouble. Those around me know to call 9-11 fast.

  431. Kim says:

    Hey! I live in AZ. When I found out I was allergic to the cold I believe I was about 12 or so and lived in Maryland. I came in from playing in the snow one day and my hands were so swallon. Still have it and 31 now. None of my family has it and most people don’t even believe me when I tell them. Hoping one day it goes away and really hoping my baby doesn’t get it.

  432. Stephanie says:

    My 20month old was just diagnosed a couple weeks ago. He started getting hives on his hands when he would eat cereal with cold milk. At first we thought it was a food allergy because he is also allergic to eggs. Then we went on vacation and swimming in the lake caused his whole body redness and hives all over. Benadryl helped that day and after seeing our allergist we got the official diagnosis. Our allergist didnt believe me at first because hes never had a patient this age test positive to CU. Now we’re just taking it day by day and praying he outgrows it! Today his tears made him get hives while in the air conditioned house 🙁

  433. Tyler says:

    Hi! I’ve had CU since I was 9 and I am now 25 and was only diagnosed two years ago. I first noticed I possibly had CU was when I was in science class in high school my teacher had us put our arms in ice water for a minute and then try to write to see how cold affects our body, my lab partner knew something was wrong when I put my arm in the ice water and started crying in pain, I had to do it on both arms to get a passing grade on that assignment, and it was so painful. I live in Alaska, which it is hard for me to avoid the CU symptoms. I take Zyrtec daily to make sure that I don’t get CU symptoms, unless I am fishing and I will get hives. People here laugh at me when they hear about my cold allergy, or they think I’m crazy until I almost start crying from the pain. My dad has his certification in wilderness first aid and his instructor didn’t know anything about CU until he told her about me. Now I carry and Epi-Pen every where with me just in case.

  434. Hi, my name is Angélica, I live in Brasil. About four months ago I started having severe reaction to cold in my hands, then in my feet and now all over the body. I am very scared because the reaction is severe. This weekend my legs got wet in a boat so the hives were extreme and I had problems breathing. I have astma, so I used my emergency medicine. I am afraid it rains on me and I die. My skin gets like a horror movie if water from the tap touches it, any splash becomes huge and red and ichy and it burns. If I drink cold water my tongue iches and it is hard breathing. I have been to several doctors and they are afraid of me. I took anti histamine medicine and it helps nothing. I am doing several exams now for horrible deseases. But the doctors keep sending me to other doctors. I do not know what to do.

  435. I just posted a comment and I am Angélica. I am 50 years old and very active. This past four months became a nightmare. If I sweat, I have to change clothes because as soon as the humidity gets cold, the hives and swealing start. It takes no more than 30 seconds after I touch water at 32 degrees for the hives to appear. I have not found anyone with do severe reaction. If anyome can help me, please, do.

  436. Correction. I mean water at around 25 degrees celsius. Which is barely cold.

  437. LeShay Hoppe says:

    I have this but not as severe as that. I can drink cold drinks or food and touch cold things. Mine happens when my whole body gets cold (cold room or cold outside). I break in hives and itch. I’ve never stayed in the cold for really long so dont know what would happen with prolonged exposure. Mine started around age 11 but went away in my 20’s for around 10 years. It’s back now and I’m 35. I hate it so much.

  438. Jennifer Winans says:

    Are you able to leave the country to go to another doctor? Carol mentioned a doctor in Canada. Do you take a daily allergy medication?

  439. My mom and some siblings suffer from familial cold auto-inflammatory syndrome and recently my daughter who is 7 years old started showing symptoms of cold ulticaria. She just had a genetic test and waiting on results.

  440. Lauretta says:

    Hey guys pls I don’t know if I have CU but whenever I am bathing foggy like steam comes out of my body, whenever the weather is chilly I will become itchy, angry pink spots will spear on my hands and arm, and I feel extremely tired and also I will find it hard to breathe or if I drink something cold I would feel dizzy and tired and sometimes my lips may swell. Pls I need your help. I am 16 years. Thank you.

  441. Jen says:

    Hi i just read your remark I live in maryland I see you lived there but moved. my son has it and when winter comes he gets hives and asthma issues. Do you have advice on if we move to warmer climates he will do better ?

  442. Maya Sachs says:

    Hi I’m Maya and I was diagnosed with Cold Urticaria when I was 10 years old (16 now). I live in New York City and I can get hives in cold or hot weather if there is wind or I am sweating. I can drink cold things but nothing can touch my skin that is cold even in the slightest. I don’t know if I have familial cold urticaria but both my gradmothers in either sides of my family have what I have but less severe.

  443. I’m Garret. It’s been very strange for me. I had Cold Urticaria for about two years, and I’ve either just done a good job of ignoring it, or it has recently went away. I don’t know if that can even happen because I’ve never been diagnosed, but I blacked out after a trip to california and swimming at the beach, my whole body flared up in hives and I passed out for a while on the beach. I couldn’t drink cold coffee and carrying milk from the grocery store with my bare hands caused intense pain. But lately it’s gone away. Again, I was never truly diagnosed with cold urticaria, but now it doesn’t seem like a problem anymore.

  444. Martin Davies says:

    Hi folks.
    I live in the UK and have had CU much of my life, diagnosed when I was 27. Always been sensitive to the cold, I now feel pain from a cool day, from aircon and from touching cold objects. Had anaphylaxis many times and used an epipen (adrenalin injector). There are a few of us around as can be seen in the comments here.
    My central heating bill is large, most of the year I will have the heating on and 26 to 28 is normal house temperature for me – even in summer I have heating on.
    Horrible going into places with aircon – my brother lives in Qatar where temperature this time of year is 40 (lovely) but I can never visit him – houses, shops etc there have aircon never mind the airports between us.
    Had a heart op last year and the surgical team wrapped me in an electric blanket – that worked. A week in hospital triggered allergic reactions as much as I normally get in 2 years at home.

  445. Katie says:

    Hi I’m Katie and I have just recently found out at I have CU. I’ve had it for about 5 years. I’m 23 now and been getting progrevissly worse. Simply sitting in a room with AC for 10 minutes causes hives. I’ve been going to the doctors for those 5 years and they could never find the problem, said it was my laundry soap that I’ve been using my entire life or something I was eating. They never thought to do a test… anyway flash forward to now. I was in the ocean for about 20 minutes and didn’t realize my entire body was COVERED in hives. I ended up vomiting and passing out right then and there. Woke up in an ambulance being rushed to the hospital. Turns out the hives were bad enough to block my airway. Scariest moment of my life. There at the hospital they finally diagnosed me with CU. Gave me an Epi pen and told me to stay out of the cold. So I’ve been researching it and trying to figure out what exactly it is and how it was caused. Not much luck so it’s nice to know there are people out there going through the same thing.

  446. Ashley Rice says:

    I am not diagnosed, but I know I am afflicted by cold urticaria. Hives, swelling, and itchiness to touching cold things. Hives if out in cold air. The last time I swam was 4 yrs ago during a triple degree day, in a warmer river. 5 minutes in and anaphylaxis set in. It’s been gradually worsening over the years, and started in 2005. If I eat or drink cold things, my mouth, gums, and lips swell and itch.

  447. Rims says:

    I have this cold articara and gets on my nerves, i am on tablets for my immune system as they said its attacking my skin , i have it in summer as well , my skin swells that bad i cant eat or drink cold things or touch it hurts so much , but hot water i cant really feel so i have to wear rubber gloves , rain wind snow i go dizzy and breathless swimming i tryed 1 time never again unless its not cold . I have horrible skin when this acures and ages u .but i have cream and does help alot with that . Sorry to hear other people have it . Not nice

  448. Jennifer Porter says:

    My name is Jennifer, I am a 27yo nurse living in Phoenix and I recently began experiencing CU. The reactions started after I was bitten by an insect and broke out in full body hives. I took benadryl and symptoms subsided, however in the weeks following the bug bite, I began developing large, itchy welts wherever my skin touched a cold object. (Blowing AC also causes hives). I went to Urgent Care after drinking ice water and developing tongue and throat swelling. If I had not had pictures of the welts, I don’t think medical staff would have believed me. Lab work was all normal. I was prescribed an epi pen & told to follow up.

  449. Jonah says:

    I’m Jonah and I live in Ohio as well. I have never been diagnosed, but the symptoms are quite clear and started to show about two years ago. At the time, I was 14. I recently swam after progressively seeing CU, I guess, leave my body. It’s so odd that for some, it lasts forever, but for others: a few years. It truly is a life-altering disease and it’s far too difficult to explain to anyone. My parents didn’t really believe me for over a year and that first winter was unbearable having to take the trash out, carry groceries in, etc. Even when I showed them, they dismissed it. It really weighed heavy on my mind, but I’m so thankful it’s gone and only wish the best for everyone here that still has it. No one really understands it unless they’ve had it. My parents never took me to the doctor or tried to contact anyone; my mom would jusy give me benadril or whatever. I just did my best to avoid the cold. It was really effecting me during tennis. The coach was kind enough to pay for our indoor center a bit longer due to me. Thanks Mr. Heistand. Being almost 17 now, I’m still curious about the disease and I’m glad I’ve found this. It’s nice to hear from other people (and at the same time, not so nice). I really, truly, wish the best for you all in overcoming/living with this disease.

  450. jennifershanneman says:

    Hi, I’m Jennifer and I live in Wisconsin. I’m now 27-years-old and I’ve had cold urticaria for about 15 years now. It started off slowly when I reached puberty and has gotten increasingly worse throughout the years. The dermatologist who diagnosed me was quite dismissive with saying I’d just grow out of it. Well, 15 years later, here I am… still have it. I agree with a lot of the other comments that it’s a very difficult thing to explain to people. Most people don’t believe me when I tell them I can’t go into the cold! I’ve (thankfully) found a treatment plan that helps me significantly. I take 100mg of Benadryl every night before bed. It has a fairly quick short life, but if I ever forget to take it, I can tell when I’m scraping the ice from my windshield the next morning! It took a bit to get used to. It obviously causes extreme drowsiness, but taking it before bed is kind of a win-win for me. I also take some other type of antihistamine if I’m going to be exposed to the cold for long periods of time. I usually take Zyrtec. With the cold urticaria, I also have a mild case of dermatographism and vitiligo. I sometimes also get heat urticaria and sweat blisters. I can’t eat cold foods like smoothies or ice cream unless I really take my time – constant exposure is dangerous! My tongue and throat will swell. I’ve also recently developed lactose intolerance… so, even if I really wanted to eat ice cream, I can’t. It’s really strange that all these random ailments keep showing up.

  451. Kim says:

    Yep. Diagnosed a couple of years ago. I was in the emergency department last week getting iv steroids and benadryl due to the air conditioning in my office. I live in Canada. I take cetirizine daily and carry an EpiPen. I do know my limits with swimming. Lots of fun lol. People think I’m kidding when I say I’m allergic to the cold. Nice to meet you!

  452. Riley says:

    Hi I live in California where Winters are very cold and Summers are super hot so we go swimming a lot and I’ve had CU since I was born I am now 15 and we just went to the allergist for it.

  453. dawn says:

    I am not alone! It all started about 4 years ago, taking fruit from the fridge and cutting it. After i was done the palms of my hands began to itch and burn, big red hives formed and they swelled. I thought it was the fruit. Then it happened again and again.. all with different things. So I went to the doctor and sure enough thats what thye told me…cold urticaria..but they dont know why lol I live in Canada this should be fun. Exposed skin in winter, holding a drink at the bar..all drove my hands crazy. Ice cream and popsicles began to burn my mouth and make my lips swell..it got worst and worst. and then it just stopped. every now and then it comes back. like this week :/ havent had a problem for months and this week holding a soda can caused my hand to burn itch and swell. would love some guidance..ive been laughed at when i tell friends about my issue…hell ive even been laughed at by doctors, like the one that tokd me it is so unnecessary to have an epipen for this and didnt want to prescribe mw one.i take reactine daily but any other suggestions would be great! 🙂

  454. Amy says:

    I’ve had the diagnosis for 3 years now. I was diagnosed during a snow storm, I was outside for maybe 15 minutes cleaning off my car after work. After I got home (I worked 0.3 miles from my house) someone made a comment about how I had hives from my chin down my neck onto my chest. I went and looked and noticed them on my hands and wrists and mid-calf down to my toes. I took a dose of benadryl but within -0 minutes I was in anaphylactic shock and In the ER. I carry an Epi Pen, Benadryl and prednisone with me at all times. I’m an EMT so I work outside in the cold quite often so it’s hard to manage with my job. I’m supposed to be getting surgery within the next month for a work injury but everyone is freaking out because of the cold induced urticaria. Has anyone else had surgery and what have they done to avoid triggering a reaction?

  455. Isabella says:

    I’m from Ohio as well! I developed cold urticaria after getting mono in 3rd grade.
    Also I have a story of a time it really got serious..
    So I was at a show with my Drumline, we were practicing outside in the January cold of Ohio. No one believed I actually could die from the cold, until I started wheezing and I broke out in my hives. It was pretty scary, not to mention I had forgotten my epipen! Everything was fine in the end, it was just scary.

  456. Natalie says:

    Hi there I’m 40 and I’ve lived with extreme cu for nearly 35 years. The first onset was when I was 5 years old. I went swimming ata friends house got covered in hives and passed out. The rest of my childhood I’d try to go swimming and then I’d have an extreme anaphylactic reaction including hives, burning itchy swollen limbs, drop in blood pressure and lack of consciousness. We’d go to the doctor and get the same aggravating response, stay warm… maybe you’ll grow out of it. I never did. In fact I think it’s gotten worse over time. I can’t carry a jug of milk across the store without getting a large itchy hive. I get hives from air conditioning, cold drinks, ice cream. It’s something that’s always on my mind. I’ve never meet another person with cu. it nice to know you’re all here.

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