I was just diagnosed with small fiber neuropathy. I am a female, age 55. I would like to hear from others with this condition so that we can be a support to each other.
Hope to hear from you soon.
I am having a glucose tolerance test next week but have no symptoms. I also had a biopsy done and have to wait 6 weeks for the results. They believe mine is idiopathic and he said it is usually hereditary. My brother has burning in his feet. I have burning and tingling everywhere in my body.
I had non of the normal diabetic symptoms either, a normal fasting glucose test showed up as normal, but in my case the 3 hour glucose tolerance test did show higher than normal response to the glucose challenge.... trouble is a lot of docs who are not up to date with current neurological findings still believe you have to have full blown diabetes for years before any nerve damage happens, but this is definatly not true in all cases.
Was that a skin punch biopsy ?
Yep, the burning & tingling is very typical of small fiber damage, the hardest thing now is finding the cause, i suppose that you have had all the basic workups like, Sjogrenís syndrome, Vasculitis,Lupus erythematosus, Sarcoid, Nutritional deficiencies [ b12,b6,b1 ], Celiac disease, Lyme disease, Fabry disease, Amyloidosis, Alcohol abuse, Toxins.
Yes, I have had all the blood tests and MRI's. All normal.
When did yours start? Now that I look back, I think mine progressed slowly over the years. Do you know anyone else personally with this condition? May I ask how old you are? Do you have any other problems besides burning and tingling? Do you have flare ups? I have a very weak back and it seems like everyday I have some kind of ache or pain in addition to the burning and tingling. I can't sit for long periods. Never could for years! I think it's all part of this too. Also, I fell on my left hand two years ago and it ached for two years. No one could tell me why.
I am on Neurontin and not sure how much it is helping.
Do you live a pretty normal life with this condition?
Mine started 5 years ago when i was 50 years old, started in the feet and progressed rather quickly up to my knee's, i was lucky though as the cause was found early and i have been healing ever since to now were its 99.9% gone.
The burning was constant & i had tingling and sharp jabbing pains as well, i had plently of flare ups, i noticed that stress is one thing that really aggravates nerves and the warmer the weather got, the worser the burning got.
i have to go out now, but will talk later if you wish to.
Yes Barb impaired glucose tolerance, no glucose lowering drugs but i went off all high sugary carbs & done exercise, started taken supplements for nerve support, multi B, plus additional b12 & b1, i took the b1- 100 mg x 3 times daily it seemed to help the burning severity some, later on i started taken R lipioc acid that also helped the burning for me anyway.
I couldn't tolerate Neurotin, it just bombed me out more than anything so my neuro put me on 300 mg slow release Tramadol x twice daily & 150 mg Endep at night & 25 mg endep in the morning, luckily these days i don't need take any of these drugs.
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Thanks so much for your responses! I am the kind of person who wants to be as educated about a disease as possible. For example, my daughter was diagnosed with Cystic Fibrosis, and since there wasn't a chapter in my city, I began the local chapter. ( removed ) Also, we are moving to Arizona and I noticed there is a neuropathy center in Phoenix. ( removed )
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Hi Barb. My name is Allie(age 40) and I have small fiber sensory polyneuropathy, non-length dependent. That is the official diagnosis from my neurologist. The symptoms(burning, twiching, tingling, stabbing pains, cramping) mainly in legs started in 2004 and were intermittent. During that time I would find myself dropping things and my balance seemed off. In Jan. of 2006 I awoke to find the left side of my face numb. I wasn't really concerned b/c I have had migraines that were preceeded with this type of numbness. I found myself preparing for the migraine but it didn't come and after two weeks I finally found myself visiting the first of five neurologist, most of whom had a wait and see approach. By May of 2006, I had constant numbness in my face,legs, and arms. At one time it did progress to my waist. In November of 2006, I found a wonderful neurologist(5 hours from my home)and at the first appointment he listened to me and decided that I was probably right about my condition. I read so many articles about SFN and I new that was my problem. He performed the skin biopsy and 1 week later I finally found out what monster I was dealing with. It was a long ride and my will to know was the only thing keeping me afloat. The numbness is most noticeable below my knees and elbows but still have numbness of my face. I also have no temperature recognition in my lower legs and lessened in my arms. Currently, The other symptoms are muted with the medicines. I take 100mg of nortriptilyne and 400mg of Lyrica for the pain. I was just recently placed on trileptal for the cramps and it has done wonders. I also take ali-flex and darvacet for breakthrough cramps and pain. I still have episodes where my feet up to mid calf turn red and burn in response to hot temp. and stress of being up on my feet too long(this is also called Mitchell's disease or erythromelalgia, secondary to SFN). Currently I feel that I am living more normal than I have since 2004. The power of knowing and dealing with this condition plus a combo of meds. that work for me. I have to adapt my life but I know my limits and I don't push b/c I know that I will pay for it later.
My neuropathy has been caused from my occupation as a chemist. At this point, doctors feel that I have a very slim chance of getting better. The key now is acceptance and adapting. I never thought I would be able to say I feel good, but I can. I hope that you find a cause now and that you sfn will be reversible. I would like to continue to talk with you as well b/c I hope that I offer some information that you need.