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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: Mar 12 2:12am | Replies (307)

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@hertz4425

As a person freshly diagnosed (correctly) with erythromelalgia, I was wondering if the brave souls here could let me know the origin / advancement of their condition. I had a fungal infection on my feet which took a few months to treat, and my doctor suspects the creams and the stress triggered a flare. (I realized I had at least one previously, years earlier, but didn't know what it was.)

With the condition seemingly managed for now, I have no idea if it is safe to re-start my active life. I was/am a runner, with my last marathon in October of 2024... the 7th marathon of that year.

Would a trip to Mayo be worth it to discuss? I have completely eliminated caffeine, alcohol, and my beloved spicy foods and am feeling better. Using only a sheet to sleep, and I'm researching meditation. I'm amping up hydration and working on the last, hardest elimination yet... sugar.

Any insights from the community are welcome.

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Replies to "As a person freshly diagnosed (correctly) with erythromelalgia, I was wondering if the brave souls here..."

Hi, sorry you deal with this. I have possible Erythromelalgia and have suffered many flares for years. My triggers are sugar, sodium, caffeine, stress, heat, sun, humidity and being sick. I usually can't wear sneakers if its too warm out. If you are a runner you could try buying breathable shoes, going sockless, or putting shoes/socks in fridge..but that would only last so long. Elevation, drinking cool drinks, personal fans, cool showers, diet seem to help most. I sometimes sleep with a ice pack under my neck at night to get cooled down, don't know why but it helps when lying down. Personally use a window Ac unit in my bedroom, game changer! I never use icebaths as this can cause tissue damage. I take gabapentin for my PN which I think slightly helps but have not tried anything else. Aspirin or ibprofen can be helpful but have to be careful of long term use and the stomach. That's what happened to me anyway, chronic gastritis, so no more Nsaids.