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.
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