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Anyone out there with Erythromelalgia?

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

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@emfm4me

Yes, I was diagnosed by a rheumatologist at Mayo Clinic, who I still see. The face/ear flares are similar to the ones in my feet. There’s redness, burning, and skin is very hot to the touch. Sometimes there’s some very slight swelling. I used to get swelling in my feet to the point where I could not walk. If you haven’t been diagnosed yet, take photos of the flares to bring to your doctor. It’s helpful for diagnosis. Hope this helps you.

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Replies to "Yes, I was diagnosed by a rheumatologist at Mayo Clinic, who I still see. The face/ear..."

Yes, im in the process. Thanks. May i ask how long it took to diagnose? Was it ever misdiagnosed??

Also, what was your diagnosis process?

I wake every morning with a flared face. Pink or red and the heat index varies with the color. Luckily it settles after about an hour or so.