New / Intro
 

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

Nice to meet you!!
 

Hi,
I am also new here and am looking for support and maybe a friend and humor would be a great. Don't feel like you wrote to much that is how we get to know each other. I talk alot my husband reminds me of that all the time. But I can relate to not being able to do the things you use to do or want to do but can't. Have you found anything to relive your pain? I havent yet, today I can't walk and have been crying all day till I found this web site wheich has helped me understand better of what Im dealing with I just got diagnosed. So, I can say Im scarred and worried about the quality of the rest of my life. I am looking or hoping I can find some inspiration from others dealing with neropathy

Welcome to both of you! We are at a great place with wonderful support and advice.

I apologize, I'm late arriving to your thread/post. I did get a message letting me know about your burning mouth - I too have had burning mouth syndrome since 2007. Only now am I beginning to feel some relief (perhaps the nerves healed themselves?) on 1 side of my mouth. The other side's still iffy... but I am medicated for BMS (burning mouth syndrome) so that's got the pain under control so I can live a normal life, and going off the medication, even slowly, is scary (I've been tapering off ... if I hit a burning pain bout as a result, I'll have to accept that I still need medication for this condition).

Long story short, if you have any questions about BMS, or wish to know more history, what I've tried, what discussions I've had about this syndrome, etc.. please send me a private message. I'll be glad to discuss with you, and hope that we can perhaps 'bounce' ideas off each other about this mysterious condition.

xoxo Laura