The Weird Condition That Keeps Me Inside All Winter

Like a good Canadian girl, I loved cold weather when I was a child. I could play in the snow, skate on outdoor rinks, and sled for hours at a time — and that’s what I did for the first 11 winters of my life. When the twelfth winter rolled around, though, I couldn’t step outside without feeling like my face and hands were on fire, and I couldn’t stay out there for any period of time without developing hives across my cheeks and painful swelling in my fingers.

My pediatrician couldn’t figure out what was happening to me, but he did suggest a practical solution: Don’t go outside. (Thanks, doc.) My parents sent me to school with a note to that effect. I didn’t like it, but what choice did I have? My skin turned to pure, itchy fire upon contact with the outside air. Thankfully, my symptoms didn’t return the following winter, or the winter after that.

Until, toward the end of a winter run in my mid-20s, I started to feel a similar burning. When I got home and started removing layers of running gear (much-needed in Canadian winters), I realized that my entire body was covered in frustratingly familiar welts. I started following my old doctor’s “treatment” immediately, but this time I also consulted a number of medical professionals to see if I could learn any more about what was happening to me.

My GP had no answers, but figured that an antihistamine couldn’t hurt. The allergist that I saw was able to rule out any other environmental and dietary issues that might be contributing to the hives, but could find no cause. She did determine that I was allergic to dust mites, but my issues with an indoor allergen that gets worse during the winter did nothing to explain why my problems started when I stepped outside. I was ready to write it off and learn to live indoors until an osteopath who worked at my gym told me about something called cold urticaria. Armed with this new information, I marched back to my GP’s office to demand confirmation that this was what was going on with me. And yep, after some research, he finally agreed.

A rare condition found in less than one per cent of the population, cold urticaria is a skin reaction to cold temperatures. It mostly affects younger people and usually goes away on its own within five to 10 years, but a lucky few might continue to experience symptoms for much longer.

According to David Stukus MD, a spokesperson for the American College of Allergy, Asthma and Immunology, it’s very similar to an allergy. The physical trigger of cold temperature opens up the mast cell, a type of white blood cell that is part of the immune system, he explains: “Histamine is released from the mast cells and it’s essentially the same thing that happens during an allergic reaction.”

The most common symptom are the kind of hives I developed after my run, but the severity of the cold sensitivity varies from person to person. Most cases are relatively minor — people might develop a mild rash while outside, or some discomfort while holding something cold — but the worst cases can be dangerous. For the most severe cold urticaria sufferers, something as seemingly innocent as jumping into cold water can cause a deadly anaphylactic reaction.

The majority of people with the condition can eat and drink cold foods and beverages without any issue, but it can lead to some numbness and swelling in the throat for some people.

What constitutes “cold” can also be different for each person with cold urticaria. The Mayo Clinic states that the majority of reactions happen when skin is exposed to anything under 39 degrees, but some people can also be sensitive to warmer weather. Wind and dampness can also contribute to the problem.

My own cold urticaria is relatively mild, it turns out. My hives generally start in the under-40-degree range, and I have been able to swim in relatively frigid lakes without dying. I even braved the cold plunge pool at a spa a few weeks ago and remained both breathing and itch-free.

But even a mild case can have a significant impact on the quality of your life. I’ve had to give up my beloved winter running. I can only eat a small amount of ice cream before my tongue starts to feel like it’s on fire. I can’t hold a glass with ice in it to save my life. Even when it’s not cold out, a good wind can spark a few hives along my cheekbones. And, when it is cold, I try to limit my exposure to the outside world, because full body hives can still make you feel awful even when they don’t kill you. Although this winter has been a relatively mild one — which was a relief, given the kind of brutal predictions that experts were making last fall — the few vicious cold snaps we’ve had in Toronto this year have left me housebound for days at a time.

There might is no cure for cold urticaria — in fact, we still don’t know what causes it — but there are treatments that can help lessen its symptoms. If you think you might be reacting to the cold, Dr. Sutkus suggests meeting with a board-certified allergist in order to receive a diagnosis and come up a treatment plan that’s right for you.

“Almost all people can experience relief through understanding of their condition and proper use of medication. So I think it’s important that people realize that they don’t need to suffer,” he says. “Don’t settle for less than comfort.”

Non-sedating antihistamines, taken daily or on an as-needed basis, are typically recommended to cold urticaria patients, but the treatments can be as individual as the people who have them. In the most extreme cases, people have actually packed up and moved to a warmer climate to alleviate their symptoms.

I’ve been experiencing symptoms for eight consecutive winters now. And, if I’m honest, I’m starting to lose hope that my case will disappear any time soon. But I am learning how to adapt. I take antihistamines as needed. I wear my old thermal running gear under my regular clothes to stay as warm (and protected) as possible. I’ve learned to rock a balaclava. I keep my ice cream portions small and have been known to carry a spare glove in my purse to aid in any cold drink-holding that might happen on my various misadventures.

To be honest, it’s still a work in progress, and I wouldn’t say that I’ve reached a level of genuine comfort with cold urticaria. I’m definitely not the winter-lover that I used to be but, hey, at least I know what’s happening now. And of course, summer is never too far off.