Does anyone have anything that has erythromelalgia on the face??? Pain is an understatement . I lost everything. My job, apartment, my vehicle. I’ve never felt pain like this before. I went from active to basically bed ridden. My face turns so red it actually turns to purple. My eyelids swell so bad my my eyes swell shut. The heat dries them out so bad that everything looks fuzzy. When it gets into my ear canals one hums, one rings so bad that I feel like I’m going insane. The pain is so bad that sometimes my nose will bleed. The outside of my ear will swell so bad that the skin splits and bleeds. I’m at my wits end.
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Hey @OOHMMY007 ,
Welcome to Ben’s Friends
I’m Merl, a member of the Modsupport Team here on Ben’s Friends.
Have you consulted with any dr’s? With some conditions some medicos can be at a bit of a loss when they’re not sure. This is not uncommon for many of us with rare conditions. Some people have reportedly found benefit in consulting a rheumatologist, but as there can be many triggers for EM, trying to find someone with relevant knowledgeable can be difficult.
Hope it helps.
Merl from the Modsupport Team
Yes, I’ve bn to 4 doctors, 3 dermatologist and 8 specialist. Yes, I’ve tried everything I can get my hands on. The doctors just stand around and look at me and want to touch my face with different objects and ask how bad the pain is per ea object. I’m now trying Pregabalin.
NOYB
I also have on my face and neck especially if I get in any sunlight. I can’t use hot water on my face when I cleanse. The redness seems to stay most of the time and nose and cheeks get hot and painful. My nose has actually swollen shut when I had a cold with had a fever. I am using prescription cream for EM and use on everywhere I flare up (face, feet, hands, etc)and I am also using a skincare barrier restore cream at night which seems to calm some of the redness. The face is one of the first places I feel flare ups coming on.
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I have it on my face and ears. They dont call it burning man syndrome for nothing!! The pain does drive you into dark places. Its a disability, its limiting, and Im sorry youre going through it. I have never heard of eyes swelling shut. My face and ears get hot bright red and burn so bad usually along with my hands and feet. I take gabapentin for peripheral neuropathy and that does help. I tried switching to Pregabalin, I liked it but was too rough on my stomach. Ive heard they use Amitriptline, spelling, but I cant take it. Ive used topical lidocaine and cbd cream but nothing prescribed.