full body burning 4 over 4 years

My whole body has been burning for over 4 years now. I've been on tegretol, neurontin and now i take 100mg of lyrica 4 times a day, lamictal, and baclofen for the pain. In addtion, i have thyroid disease and MCTD and severe Reynaud's for which i take a whole host of medications including mobic, trental, norvasc, synthroid, DHEA. The pain is so intense at times that it is undescribable, plus the face that over the last year my muscles have begun to jerk and the fact that your arm or legs or fingers moved when you haven't moved them is just downright creepy. Moving, flying, even sitting in a car...makes the pain excruciating, causes a migraine like headache, and severe nausea. What scares the **** out of me is that the last neurologist i went to said that it is going to get worse with time. My quality of life...well, it's severely diminished...I only leave my appartment when i really have to bc the onslaught of pain sucks the enjoyment out of pretty much every and all activities. The thing is.. is my dermatomyositis has gotten better and i don't have joint pain now....but yet the burning, twitching, and now sensations of wetness continue to worsen. I have neuromas in both my feet. Last year, i had three ulcers and a cyst and a pleural effusion ( all at the same time- i fell down and had to go to the ER- but the pain had been so bad before that i didn't even realize my abdomen hurt more than usual). But the weird thing is my muscles aren't weak and my reflexes are hyper- all of them are 3's. I have scoliosis and osteoporosis too. I don't whine and I always smile but secretly i'm scared i'm gonna die in huge amount of pain and nobody seems to know why i am burning. The neurologist thinks immunosuppressive drugs shuld be taken. The burning is everywhere...in my mouth, my face, underneath my arms, my stomach. It hurts when I breathe...which i know could be pleurisy again but i can't stand to take the colchicine again. What happens to people when they have full body neuropathy with a normal EMG?

[onfire]

Wow I think I found my twin.  I have been burning now for 2 years.  It all started in my throat then my tongue and then after 15 months of that it spread everywhere.  I call it  Ben Gay body. That is exactly what it feels like.  After the full body burn spread I started getting muscle twitches in my legs then my arms and now it is everywhere and I mean everywhere. I too have had every test under the sun and still no answers.  I am currently seeing the chief of neurology at John Hopkins.  I am hoping he is going to figure this thing out.  I am so tired of being scarred of what's to come or what the hell is this thing.
I see your post is kind of old and I am hoping you are doing better.  

Give me an update!!!!


D