Hello! My native language isn’t English, so please excuse a few mistakes. I’m 17 years old, and this year I had my first experience with cholinergic urticaria. It came to me during autumn/winter. At first I didn’t realize it due to lack of movement, because I had one week of vacation from school, and I spent most of it in front of computer.
The first day of school after holidays was probably one of the worst days of my life, because then I felt what cholinergic urticaria was, and I didn’t know what was happening to me. I usually wear short-sleeved shirts because I don’t like sleeves, but that day I was wearing a jumper and it kept me kinda warm, so that was probably why it was so bad.
I was itching from the very morning and thought maybe my clothes were washed with something weird. During the longest break between lessons, as always me and my classmates went to eat to a building that was about 0.5km away from school, and because we didn’t have much time, we always go fast, and it was a bit chilly outside, so by the time I got there and went into the building, my body temperature was higher than usual. And because the building is connected to a kitchen, it was hot in there, that was when I felt the worst side of cholinergic urticaria.
I was so itchy and didn’t know what was going on. I couldn’t stand in line. I was moving, all scratching myself and asking my friends like, “what the heck…how are you not hot?” At one point I was just thinking of running out of there, but after a while it got a little better.
At first I didn’t tell anybody, because it was exactly one week after I had started using oral steroid metandanobol to get a little buff (working out naturally didn’t really do anything for me). So I wanted to get big in a short period of time. At first I thought it might be an allergy to that steroid, so I was afraid to tell anybody, and stopped taking it completely, thinking the hives would get away.
By the way, when working out I didn’t realize the hives at first, because I was working out in my garage, and it’s outside. So I didn’t get the itch in colder temperatures. Two or three weeks into having cholinergic urticaria, I couldn’t take it anymore, and I went to a local doctor. At first she gave me 10 days cycle of Opexa. It didn’t work, but I’m not sure…maybe it made the hives a little better, but I can’t confirm it.
After that I went back and she gave me 10 days cycle of Rupafin, which didn’t work at all. Right now I am about one month into having cholinergic urticaria, and what I have realized about me by now is that any instant scare, any physical activity, any increase in the temperature of my body gives me the heat hives. Even if I drink a cup of hot coffee or eat something that is still extremely hot, my body heats up from the inside, and I still get the hives. I also realised that if I eat something spicy, I start to itch too, but only on my head, nowhere else. I always loved spicy food, and now I can’t even eat it.
Along with the heat hives, I get rashes. If it’s lighter, I get red dots-like rashes, but if the hives are more intense, it looks like nettle burns. I also realized that I only get rashes in places that I don’t sweat. For example my belly, upper chest and forearms and shoulders get the worst of it. But I sit a lot, so my butt sweats, and if I go outside, my legs get sweaty. These are the places I never get itchy, and it has never itched me on my lower body.
If I go home fast and get warm, it’s usually pretty warm in my house, so coming straight into a warm house from chilly outside gives me the hives instantly; but if I walk back outside, itching is instantly gone. Or if I can’t stand, it I go into the shower and pour cold water on me, and it makes me much better instantly. After cooling down my rashes go away within minute or two, though sometimes it may take up to 10-15 minutes or so.
I’m glad to know that I’m not alone with this, that there are people who understand this pain. I tried going to a steam sauna on Sundays, and within the first minute or two, it itches a little bit; but then it gets better, and when I get out, I don’t get little pop-up rashes. It just looks like big red spots on my skin, and after that my cholinergic urticaria gets much better for like 3-4 days. Then it gets back into full pain again.
My local doctor registered me to see an imunologist/allergologist within a few days, so maybe I’ll get to know something new. From a little piece of paper that I got from my doctor, I read the diagnosis and checked it up on the internet, translated it to English, and what she diagnosed me with translates to simply “urticaria.” So I hope it’s the same thing as cholinergic urticaria..
Anyways, even though I got to know my disease a little more, I’d still like to ask a few questions here. What I got to know from the internet is that some people get cholinergic urticaria only in the colder seasons of the year, and because I got mine in the ending of autumn and the start of the winter, does it mean that I’m one of them and that it will most likely go away after the winter is over?
Also, one of my bigger concerns is that I’m finishing school soon and will have to look for a job, but I’m afraid to think of a job if this disease is going to haunt me for my life.
Anyways, that was my experience and how I got to meet cholinergic urticaria, I will most likely update my status on this forum, thank you for reading.