Remission: partially adult onset improvement, but weight reduction playing a major role

I was diagnosed many years ago at age 14 with severe CU and could not sweat in any capacity without intense “prickly”/needle-like pain permeating my entire body, the experience we all know.

I used to think “in 10 years, they’ll figure it out”….. (yeah… ha ha…).

Using a blanket at night? Triggered CU. Sunlight on my skin? CU. A walk? CU. Standing beside the stove while I cook (heat)? CU. Windy outside (too dry skin)? CU. Spicy food? CU. Any emotional intensity (like laughing very hard with your friends) enough to trigger a sweat/heat response in skin? CU.

From age 14 to 24, only consistent sweat therapy worked (exercise or sauna) and allowed me to live a somewhat normal life. CU not gone, but minimized enough.

Antihistamines generally did not work for me, and the excessive combinations/amounts of ones that did were not worth the side effects when I could achieve similiar symptom reduction via consistent sweating. Was offered Xolair, but did not take it for the above reason, as well.

Allergy testing did not reveal anything, so no triggers to avoid.

Supplements did not help (not vitamins, minerals, polyphenols, probiotics, herbs, near infrared light, green smoothies, or the thousands of other things you’ve also read. nothing. I tried it at all. All. Truly. None made a difference). Food made no difference. My diet was always super healthy, but changing macronutrients made no difference. Blood tests were normal. Not an issue.

The intensity of CU pain naturally went down around 30-40% from age 14 to 24, so partial improvement due to progressing age/time.

**However, most importantly, after a significant weight loss, I noticed that my CU is just… not occurring anymore. I can’t even remember the last time I experienced strong CU, merely having one small uncomfortable reaction for just 5 seconds 4-5 months ago. Further, I don’t seem to “need” sweat therapy anymore. Even if I go days without sweating, I still don’t get CU. Can’t even remember the last time I had a CU attack. At age 14, it was daily CU attacks. Monumental and life changing difference from then.**

I’m a 5’8 male around 145 pounds.

Being at 150-160 pounds makes me feel overly warm/hot all the time with progressive increase in CU symptoms, so even a normal healthy weight and BMI is not sufficient to totally minimize CU, for myself, for whatever reason. I suspect it’s body fat percentage more so than weight, and even small deviations in it that one would not consciously think of… can alter my physiology enough to change CU.

My doctor says science on CU is very poor and believes, albeit without evidence (though theorizing), that some with underlying CU physiology may be more sensitive to inflammatory processes involving weight or immune system regulation that science still has not figured out— but again, he says he does not know, and neither does anyone else because there’s such little research on CU. But, that was his theory on my “remission” (I’ll always have CU-like physiology until scientists figure it out).

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**TL;DR: Diagnosed CU at age 14. Most medications did not help. Consistent sweat therapy allowed me to live somewhat normal. CU naturally improved from age 14–24, but never gone, and still needed consistent sweating to remain “normal”. My CU has not occurred at all after weight loss, and I do not need sweat therapy anymore. However, I need to maintain a particular weight threshold, as going above it, even if still within a “healthy BMI/weight”, brings back CU. Whether or not this is correlated to body fat percentage or weight itself, I do not know.**

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Like many of you, I went to dozens of doctors, scoured the internet for years, and tried everything…

Thought I would share for those of you that are doing the same and are in need of a bit hope.