Looking for Other Patients with Cold Urticaria (Cold Contact Urticaria)

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!

Filed Under: Uncategorized

Tags:, , ,

Global Genes Comments

  1. 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?

    • 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.

  2. 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.

  3. 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.

  4. 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.

    • 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.

      • 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.

  5. 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!

  6. 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

    • 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. 🙂

    • 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.

  7. 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.

  8. 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

  9. 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.

    • 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”

      • 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*

  10. 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.

  11. 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.

  12. 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.

  13. 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?

    • 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.

    • 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.

  14. 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.

  15. 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!

Speak Your Mind