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Anyone out there with Erythromelalgia?

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

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@wildflower1948

Becky, this is so helpful! I will follow your advice and read all I can on EM.
About four months ago I was taking a bath and suddenly my hands turned bright red and the burning was awful. I had been taking a B12 vitamin and realized the dose was tons over the RDR. I thought maybe I was having a reaction from the cobalt which is in B12. I quit taking it immediately, but that did not stop the redness and burning.
I had bloodwork done that was normal. My feet are now turning red also when I bathe, even in warm water. So far I only have symptoms when I do dishes, bathe, etc.
Thank you again for your help!

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Replies to "Becky, this is so helpful! I will follow your advice and read all I can on..."

I have erythromelalgia, and anything heat related makes it worse and makes my feet turn red and sometimes even purple. It is a neurovascular disease, so there is Small blood vessel involvement, and small fiber nerve pain. Tests for neuropathy come back negative. Vein and artery test come back normal. There was no test for erythromelalgia, But I typed up in detail all my symptoms and how cold temporarily relieves the pain, and all the tests I have had, and what I have tried, and a good neurologist finally diagnosed me with erythromelalgia. All my tests for everything come back negative. There is no test for erythromelalgia…. it is just a matter of getting tested to rule out other things. And gathering of all the symptoms, what relieves it, what aggravates it. Etc