[sharry50]

Hi All - I'm a new member as of about 5 minutes ago. I was surfing the web for small fiber neuropathy info as I was diagnosed with it by my neurologist almost exactly 1 yr. ago via several skin biopsies.

My history involves many years fatigue, pain, stiffness, muscle tightness (all over) and muscle spasms in toes, arches, legs, back, neck, etc. For about 20 years, I was told that I had Fibro. I've been reading and researching for years and finally came to realize that every doctor I had seen didn't have a clue what 'Fibromylagia' was. It was a garbage can diagnose for those patients' problems they couldn't answer. It wasn't until a few years ago, that I found a neurologist who was really interested in my symptoms. He put me through all of the neurological tests, unfortunately, they were not coming with an answer except carpal tunnel in both wrists. We agreed on certain medications to try, ie. muscle relaxers, pain meds, anti-inflammatories, etc., but nothing really helped. He and I agreed to proceed more invasively with a muscle and several skin biopsies. in Oct. '06. The muscle biopsy results ruled out any specific muscle disease, but the skin biopsies confirmed abnormal small nerve fiber problems, apparently the small nerves fibers were dying, hence the diagnoses - small nerve fiber neuropathy. The interesting thing was that he indicated to me that he felt that many women diagnosed with fibro probably had the same. I was also diagnosed with autonomic nervous system dysfunction following other non-invasive tests, ie. 'sweat test', tilt-table test, etc.

We experimented with anti-seizure meds, and others, but after negative reactions to several, we tried Cymbalta, which is being used for diabetic neuropathy. It actually helped for several months. Unfortunately, the last month, it hasn't been working and my body pain has returned, plus pain in my feet which I never had before. I will be going back to him for a recheck in February, at which time I will ask him to go over every test result and see if he can come up with any other answers. There are so many diseases out there, I just want to know exactly which one I have. I can't accept the idiopathic explanation.

Sorry to have rambled on. Wander if anyone else has had their sfn linked to a specific disease??

Would appreciate any input.

Thanks

Shar from Wisconsin

[Darlene]

Sharry,

Hello and welcome to NeuroTalk. Great to see you have come to be with us. You will find a great number of caring, supporting members here willing to help each other as they can.

You may check out the following forum for some answers.

http://neurotalk.psychcentral.com/forum20.html

Again welcome, looking forward to seeing you around.

Darlene

[glenntaj]

We've just been having a rather long (and technical) discussion of small fiber syndromes over at the peripheral neuropathy forum.

The most common cause is diabetes or impaired glucose tolerance--there's a lot of info now that painful small-fiber neuropathies can occur before a diagnosis of frank diabetes. However, small-fiber neuropathy can also result from vasculitis, gluten sensitivity (everyone with small-fiber de-ennervation should get a gluten panel done immediately, in my estimation), amyloid, and some toxins. Fully a quarter to a third remain stubbornly "idiopathic", though in many of these (such as mine) molecular mimicry autoimmune processes are suspected.

If you haven't yet, take a LONG look through the Useful Websites part of that forum:

http://neurotalk.psychcentral.com/thread177.html

[ali12]

Hi
WELCOME TO NEUROTALK, if you need anything just ask.
Thanks