i am so sorry. i feel for you. 20 years ago i began to have the exact symptoms. it began with burning and tingling in my feet, then increased in both legs and feet, eventually in arms and hands. NO doctor could diagnose me even though i had history of a tick bite. i went 5 long miserable years undiagnosed with lyme disease. by the time i was finally treated it was too late to stop the nerve damage and i have now lived with the neuorpathy 20 years.
has any doctor mentioned lyme? i was diagnosed with everything under the sun, all wrong. the lyme was able to invade so many systems in my body...CNS, bones, heart, i even have some nerve damage in my inner ear area so i deal with a lot of balance issues.
you sound exactly like me 20 years ago. i am so, so sorry you hurt like that because i can and do relate.
if someone has already mentioned lyme i am sorry. i think i read most of the answers but may have missed some.
kathy
Quote:
Originally Posted by MiriamS
Hello Everyone,
I'm new to this forum and am in desperate need of help in dealing with this neuropathy. I'm 25 years old and first started experiencing tingling in both hands in February 2009. After numerous MRI's and an EMG, the neurologist diagnosed me with Small Fiber Neuropathy. By then I was experiencing burning pain in my upper and lower extremities, and at times, heaviness in my legs. I have had all kinds of blood work done and the cause has yet to be found (although I have kind of given up). I'm in pain 24/7, have very little strength to do anything, and feel like all my muscles are constantly aching.
I have difficulty swallowing pills, so I am taking Neurontin in the liquid form, but it isn't helping much. I'm on a low dose, but going any higher gave me severe headaches. I tried the lydoderm patch, but that didn't do anything for me. My neurologist said there really isn't anything he can do for me and referred me to a pain specialist.
I'm depressed, sad, and have begun to feel angry. I don't know what to do and at the same time feel that if I don't get this neuropathy under control I just may lose it.
A recent episode of really severe pain brought me to the emergency room, but even they couldn't help me. At times I feel like my entire body is burning.
I'm thinking of going to Mayo clinic's pain rehab program in Minnesota as a last resort at getting my life back. Have any of you been there, and was it helpful in managing the pain?
I'm feeling so hopeless right now.
Thank you so much for reading this.
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