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Anyone out there with Erythromelalgia?

Autoimmune Diseases | Last Active: May 12 7:45am | Replies (298)
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@johnbishop

I was just curious as I like to learn as much as I can about my conditions and do a lot of research using Google Scholar (https://scholar.google.com/) and a few other reliable sites for my idiopathic small fiber PN. The Erythromelalgia Association has some good information on their site if you haven't seen it before - https://erythromelalgia.org/resources/faqs/

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crazyface5000 | @crazyface5000 | Sep 9, 2021

I understand completely. I’m not saying there aren’t any info or sources that validate my list of choices. There very well may be. I’m only saying I haven’t looked for them to be able to provide. Thank you for sharing the website.

Most of the major websites I’ve looked at for answers about EM were not very helpful for me personally. I’ve tried a number of their recommendations that made little to no difference. The list of things I wrote are the only things that have made a noticeable difference for me personally.

I have gone from almost being wheelchair bound to now being able to garden outside in the summer heat. I understand EM is very personal and what works for one, will not work for another. Folks can take what they want and leave the rest.

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