The Erythromelalgia Association

Newly diagnosed

I've been dealing with autoimmune issues for several years, but was just recently diagnosed with autonomic neuropathy, myopathy with secondary neuromuscular junction dysfunction and possible vasculitis (suffered a stroke at 41, four years ago, and they think that I may have had this at the time that attacked a blood vessel in the brain). Now for the last couple of months I've daily been having burning face, red, swollen. It also happens with my feet if I stand too long and after a shower. I must keep my legs elevated or I get terrible pain and a bluish, blotchy look.

I was told I had Raynaud's phenomenon last year (I also have terrible pain when my feet get cold - no matter how many socks I put on, they won't warm up) , but now this week my family doctor says these new symptoms seem to be Erythromelalgia. I read about it and it seems to fit perfectly! I hope to find some good advice here on dealing with this new diagnosis and what medications may help. Thank you in advance for any advice you can give me.

4 Replies

Hello goldyukr...I think I replied to your post on the LUK forum: suggesting you visit the TEA Facebook page

How are things going?

🍀🍀🍀🍀 coco


Yes, hello. I first posted here, but then realized how few posts there are overall so I decided to try there instead. Thank you for checking in. That's very nice. Not been a good week. Been rather dizzy and feel short of breath. Home today resting. Feet were bright red last night and both my feet and knees swelled up. Do you get swollen along with the redness? Today is ok so far, but I feel run over by a truck. I see my neurologist on Tuesday so I'm glad for that. How are you doing?


Yes: I do swell with the EM redness: it's awful: fingers & toes like shiny sore sausages, ears & cheeks feel like balloons 😏

My right leg & foot are always the worst...the forefoot has CRPS (complex regional pain syndrome) as well as everything else affecting it....yesterday this limb had a dreadful flare...trying not to be spooked (haven't had such a bad "do" for over a year)

Hang on in there...take care

Am hoping you'll let us know how tues goes

Am at immunology clinic on Monday


1 like

I'm so sorry you share this, but it's comforting to hear that I'm not alone. Thank you. I hope your visit goes well on Monday and yes, I will post how my visit goes as well. I'm still not sure if he actually treats this, but I'm seeing him anyways for followup on the autoimmune issues. Have a nice weekend!