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!

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Global Genes Comments

  1. 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.

  2. 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!!!

  3. 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.

    • 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.

    • 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.

  4. 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.

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

  6. 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.

  7. 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

  8. 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…

  9. 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

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