Hello everyone,
I wanted to share my story and see if anyone here has experienced something similar (i saw a similar topic but i feel like its differents)
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Around 2015 (10 years ago), I suddenly began having severe burning / needle-like pain all over my skin
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These painful “crises” were always triggered whenever my body heated up: exercise, hot environments, sneezing, laughing, even strong emotions.
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The pain was so intense that my first instinct was to use cold water to get relief.
At first, doctors told me it might be cholinergic urticaria, so I tried countless antihistamines, but none of them ever worked. Over time, I realized my condition was very different from the usual urticaria cases I read about.
The situation became disabling:
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The pain was unbearable, I could not go outside, I had to stop my studies, and I was unable to do any physical activity.
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I also noticed that I had almost completely stopped sweating, except for a little bit under my armpits. Even when I tried to heat up my bathroom, put on a rain jacket, and force exercise, I only felt the terrible pain but no sweat at all.
A specialist in internal medicine later prescribed me high-dose corticosteroids (prednisone) combined with methotrexate (Metoject). After about a month of treatment, something incredible happened: while laughing hard at a funny video, I had no pain crisis for the first time in years, and instead I noticed sweat on my back. From that moment, the crises disappeared whenever I could sweat. It felt like a miracle after 10 years of suffering.
The big issue is that steroids cannot be used long-term. Each time the dose is reduced, the crises gradually come back. Now, when I exercise, I sometimes have to go through a very painful crisis first, before sweat finally comes and the pain stops. But as the steroid doses got lower, the crises have been returning more and more, and recently (after a year without strong steroids), it feels like I am going backwards again.
My main question:
Has anyone here experienced this combination of excruciating skin pain triggered by heat + inability to sweat (anhidrosis / hypohidrosis), that improved when sweating was restored (e.g. with steroids or other treatments)?
This condition has been life-changing and stopped my life completely. I would really like to know if someone found a long-term solution or treatment.
I didn’t go into detail about the whole 10 years before, but it was basically treatment after treatment with no results, until this particular treatment about a year ago finally gave me some relief.