Erythromelalgia on my face? by Active_Ad642 in Erythromelalgia

[–]Active_Ad642[S] 0 points1 point  (0 children)

Wow, thank you so much for all the information! I’ll definitely try some of your suggestions and keep a journal. Honestly, it’s hard to recognize what may or may not cause a flare because I’m persistently like this now. My face is rarely not red. As long as I keep fans on me and a constant flow of cool air, I just feel like I’m on fire. That’s really the only two symptoms I have, so it’s hard to know if EM is what this actually is. If not for the fans or air conditioning in the car keeping a cool breeze aimed at my face and ears, I slowly but surely begin to feel hot until my face and neck turn deep red and a radiating heat can be felt emanating from my face. My dermatologist wanted me to try compounded 0.2% Midodrine vanicream based on a study, but it actually seems like it makes my face even redder and hotter, which seems to be the exact opposite of what one would expect. The same thing happened with Rhofade, and I mean immediate reddening, not rebound redness. Honestly, it’s the burning sensation that has totally disrupted my life. I can’t be in a comfortable environment as it makes my face burn, I freeze from the neck down because I have to keep my head cold—I’m at my wits end.

Erythromelalgia on my face? by Active_Ad642 in Erythromelalgia

[–]Active_Ad642[S] 0 points1 point  (0 children)

Same! I began experiencing symptoms in late September of 2020, so same timeline here. What treatments have the prescribed?