Hi everyone,

This is my first post, so please excuse me if I posted in the incorrect place.

My problems started appx. 3 years ago, a few months after abdominal surgery.
I could write a book, but I'll try my best to avoid it. I have been dx w/ Erythromelalgia (EM), which has completely altered my life. Then, about a month ago, I had sudden onset of intense burning in my mouth (a mild, first-time TMJ flare preceded this).

Erythromelalgia is suspected to be a neuro-vascular condition, and as far as I know is idiopathic for me, as is the burning mouth. Trigeminal Neuralgia and small fiber neuropathy have also been mentioned as possibilities.

I feel like I'm on fire much of the time. My hands, feet, and ears due to EM (they turn a lovely bright red), and now the mouth sx have made being present mentally in my job or anywhere else extremely difficult.

I reluctantly started Gabapentin, but I'm afraid to ramp it up. I also started a low dose of clonazepam before bed. That might be the only thing so far that dampens the mouth fire just a little. My EM is much worse than it has been, and its distressing as even waiting for a bus starts a burn if the temp/humidity are "right."

I'm driving myself a little crazy, and my partner is wonderful, but I don't want our conversations to always be about pain flares and the things I can no longer do (pretty much everything we used to do). I worry how my conditions will affect us long term.

I think I'm looking for friends who "get it," perhaps some suggestions, humor, and support. I hope to someday be supportive of others going through this high velocity, never-ending pain.

I used to be fun. I want to be at least a little fun to be around again! I think I wrote too much, but deep gratitude for reading.

All the best,

Luya