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.
Thanks,
Barb
Hi Barb, mine was mostly small fiber damage, my neuro found the cause very early [ prediabetes ] and now every thing is pretty well back to normal again.
regards
Aussie
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, Sjogren’s 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.
Aussie
The Following User Says Thank You to Aussie100 For This Useful Post: sconzette (11-19-2012)
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 )
__________________
Barb
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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.
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.
Thanks,
Barb
Barb,
I am so sorry about your diagnosis. This is the first time I have ever been to this site and of course probably like you searching for any answers or help. The only people I know who could possibly understand this horrible pain and the disabling nature of this are people dealing with it. Hopefully we can find support or gain answers from each other. My story I am a 46 year old female and until 7/14/06 was completely healthy. A mother of two, a physician running a busy OB/GYN practice and a cyclist. Led an extremely active life until that day I received botox injections and developed botulism from them with total paralysis. I continued to tell the physicians about the horrible pain that felt like someone was taking an electrical cord to me and shocking constantly up my legs and arms. They of course were puzzled by that but finally diagnosed also with neuropathy from all the nerve injury. It has been over two years and I am walking again but I can't begin to explain to them the disabling pain with neuropathy. I have now lost my practice and career secondary to this but still hoping I can find ways to control or endure just to be a mom at least. I have found no medicines that have helped at all. The only drug that even takes the edge off a little was tramadol. I have done all the neurontins and lyricas with no relief. I am starting accupuncture this week a little more nontraditional but hoping and praying that gives me some relief even to be able to sit through dinner. The things I have found that help me are heat. hot tubs and for some reason being in a hot dry climate is much better for me. Also pilates and yoga. I can't explain it but stretching the nerve seems to help some. Everything else I can't do yet. I used to be a runner and cyclist and all that is gone. I will say Yoga is interesting. I always thought it was bogus before but now a true believer. Hang in there. Hopefully we can all help each other get through this.
Sharla
Please keep this thread going,just to know I am not alone. I have had it sence 2006
and the first part of 2007 had to give up my job. I thought my life would never be the same again. I can't seem to get pain free, or even down to a consistence 4 pain level.
It is so nice to read how others are dealing with this.
Thank you for all the info.
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.
Aussie
Similar symptoms etc burning up to the knees - what did they find as your root cause? Diagnosed as small fibre following skin biopsy and QST.
Has anyone had similar symptoms following seafood poisoning (prawns), glucosamine, slightly low vitamin b12/high folate or any other toxic poison?
[QUOTE=Aussie100;3681651]Hi Barb, mine was mostly small fiber damage, my neuro found the cause very early [ prediabetes ] and now every thing is pretty well back to normal again.
regards
Aussie
Hi Aussie
This is all new to me. I was also just dx with small nerve neuropathy with a skin biopsy. I have all the classic symptoms. Pins and needles in my feet , legs, arms and hands. Burning feet that get worse at night. Burning and stinging like feelings on my back. Its even in my face now, I feel tingling in my lips. I am in chronic pain and discomfort, this has made me very depressed and Im not slleeping. My Neuro has not found a cause yet. I Had a 2hr GTT, I I did not do weell on and he said I a "prediabetic" like you. But the docs dont believe this is causing my neuropathy. What were your symptoms and what did you do to feel normal again? I am despertely looking for a cause so I can stop the progression. This is scaring me to death. Any advice would be greatly apprecitated. Thanks!!
Marie
Who has small fiber neuropathy! 
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.
Re: Who has small fiber neuropathy! 
