Hey, I’m a 17-year-old dealing with cholinergic urticaria (but it is getting better!!). First I’ll be talking about my experience and then ways I manage with CU.
The first reaction I remember was in a mall around January (the month it really starts getting cold where I’m from). I had a heavy coat on and was walking around until all of a sudden I felt a painful itch I’ve never ever felt prior. As I slowly started getting more anxious scratching it, the more it spread and the more painful it felt until I was literally itching and scratching myself all over in the middle of a crowded store. I quickly left to my car and the itching slowly went away.
As January and February went on I continued getting similar reactions every now and then. I noticed it was always whenever my body temp got warmer (hot environment, exercises, anxiety). As the days went on the reactions got more intense and occurred longer and more frequently. I brought it up to my doctor who just said it was seasonal allergies. “Fine” I said, sounds right, and she told me to take 24 hour Allegra in the morning and 24 hour Zyrtec at night.
This absolutely did not help for me. The day after I started taking the antihistamines I was feeling hopeful that it would work. I walk into a classroom at school and immediately I felt the painful itching. However, while I was scratching I looked at my arms and noticed there were tiny red bumps all over my forearm reaching all the way from my wrist to my armpit. The pain was the worse it has ever been.
It was the beginning of March and as the temperature got colder my cholinergic urticaria got worse. From then on my reactions got incredibly intense. Burning, prickly, painful red dots all over my body that would persist for what seems like forever. Whenever I walked to class, I’d get it. Whenever I had to give a presentation and I got nervous , I’d get it. Whenever I was testing in a room and the heater turn on, I’d get it. I would walk in below 30 F temp in short sleeves to avoid heating up and getting the reaction. It gets so unbearably painful, to the point where the only thing you can think of during a reaction is how painful the itch is.
I had to avoid many social and academic events just in fear of having a reaction and not being able to do anything but look like a fool and scratch my whole body in front of everyone. It really messed with my mental health. I felt like I was a prisoner subjected to torture random times of the day. One of the worst things is that no one believes you (even doctors!!) and they think it’s just allergies or you’re just overreacting. It was so frustrating having no one understand what it really felt like.
But, I started researching and self diagnosed myself with CU (which I later went to an allergist who confirmed it, but said there was little they could do about it). I’ve tried a million different suggestions online, anything to stop the pain. Fortunately I was able to really manage my CU. Now, this may not work for everyone, but it worked for me.
Usually antihistamines don’t work for a lot of people, including me. However, when I started taking Benadryl (A gen 1 antihistamine while Allegra and Zyrtec is gen 2) it severely decreased the intensity of my reactions. I would still feel itching and burning but it became very manageable and less frequent.
This is for quick immediate relief and should be used sparingly as it is a topical steroid. But, I would always apply a thin layer on wherever it itches and I would get almost instant relief. However, it was only temporary and sometimes the relief would only last a few minutes before the pain came back but anything is something with CU. Also if I knew I’d be in a situation or place where I’d get a reaction it, I would put it on before and the reaction would barely be as intense.
Now for me, sweat therapy has been one of the most helpful ways of minimizing the reactions of CU. However it does come with the cost of forcing yourself into a reaction. So, what I’ve noticed is people with CU have difficulty sweating, including me. However, once I begin to really break a sweat, that’s when the relief kicks in. I would run 2 miles every other day and do intense muscle training to force myself to be drenched in sweat.
The first few minutes (maybe 5 for me) were excruciating. I would have to stop and itch, itch, itch, then keep running and stop and repeat. (This is where the hydrocortisone cream would help as well as a Benadryl a few hours before) But once the sweat started rolling it was all better. It finally felt good to be hot and not have a reaction. It felt like a miracle and for the first time in forever I was covered in sweat and I absolutely loved it. The rest of the day and the next day after, my reactions were almost nonexistent and non painful (with the added benefit of a fit body and lifestyle).
As its nearing summer and the temp is increasing to 70-90 F, my cholinergic urticaria has significantly decreased. I am no longer doing anything to help manage it besides excercise, and I no longer have prominent problems with it just in time for prom (for now at least, since it might be seasonal. fingers crossed it isn’t and it’s only a one time thing haha). It was hard, and probably one of the worst experiences and lowest lows I’ve had in my life, but I was able to manage it with enough work and willpower.
Find what works for you and stick to it, even if it’s inconvenient or adds a little discomfort, anything is better than cholinergic urticaria. [Editor’s Note: Always talk to a doctor before trying medications, sweat therapy, or exercise routines.]
Hope this helps and that you find your own way to manage,