I came to this forum about 2 years ago and read around in hope for cures and answers. Today I’m happy to say that I’m free from my cholinergic urticaria, so I just want to share my story in case it helps someone.
TLDR (short version): My cholinergic urticaria was related to anxiety. Meditation and relaxation techniques helped me more than anything else. I found out two years in, somewhat randomly. I’m sharing my story hoping it can help someone else to find their cure sooner.
I remember how it started; I woke up in the middle of the night, with my legs itching. I remember going for a run a few days later, realizing as the itching in my legs increased with my every step that my body was hijacked. I did not know what was going on, but I tried to shrug it off, thinking it would go away soon. It had to. After all, I had never had any serious health issue; the only things stopping me from exercising in the past had been broken bones (at least they made sense).
But this didn’t stop. Instead it got worse. My body would not sweat, and instead, it would itch with increasing levels of pain the more badly I needed to sweat. As the season turned towards summer I was finding it difficult to even be outside; heat and sunshine were big problems.
Traveling on the hot underground was a horrible experience as well. I learnt that there were other things could cause my body to itch: things that made me nervous, like doing stand-up presentations at work in the morning, but also sneezing, go figure.
After some research I eventually found the matching medical condition: cholinergic urticaria. Naively I thought this was the solution. Surely a doctor would have a cure? Unfortunately, they didn’t. The best they had to to offer were various kinds of antihistamines, to deal with the symptoms. Not that they helped me. I found some online forums (like this one) but their economies were broken; everyone was looking for a cure, and cure’s were short in supply.
Somewhere along the line I heard that the average time spent with this condition was 8 years. At least it was not for life, but 8 years. I filed that knowledge in the lost and found compartment of my brain and swore to never think of it again.
My life was stranger than it had ever been, but I was determined to find a rhythm, to push through. Water became a good friend. I always traveled with water; to wet my hair, to hold a cold metallic water bottle in my hands to cool them down. I took regular breaks at work to generously wash my face and my body with cold water. I even used to wet my socks to keep myself cool for longer.
Determined to not let this condition control my life (not at all!) I eventually resumed doing things that I liked but that had become so painful; like exercising, and hiking; I even gave a public speech while badly itching (not the best talk I’ve given).
A breakthrough: I discovered that I could sweat if I just persisted through the pain, If I forced my self to get hotter and hotter. And that after the sweat had broken, I would feel normal again for at least a few hours. My GP was relieved to hear this, alas I could just workout every morning, and perhaps in the evening too, as necessary.
I remember feeling a bit dejected. It’s not that the advice was unsound, and I had already begun doing this to some extent. I just understood more than ever how disempowering it is to have invisible illnesses and conditions we as societies don’t understand. I begun doing a lot more interval training, just to sweat quickly.
As the summer ended, but my condition stayed, I started showing up for my Sunday Park runs in double sweaters, with a warm jacket on top of that. People gave me funny looks, but it significantly reduced the time I had to spend in agonizing itchy pain before my sweat would finally break out, and the pain would dissipate.
In the end, I came across meditation and progressive muscle relaxation techniques, for a different purpose, while working on myself. It was never that clear to me that this was also helping with my urticaria, but after a while I realized that I could exercise without any pain or itching. As I got calmer and calmer my urticaria slowly faded away.
It seems like urticaria can have different causes, and if you are suffering, this might not work for you. However if you do spend a lot of time in your mind; worrying about what others will think about things; if you’re a perfectionist, if you get anxious in certain situations, then I think it is worth exploring. Even if you don’t cure your urticaria, reducing your anxiety is still a great thing. In either case, consult your doctor about this! And best of luck — you will make it through!