It will be interesting to here about your test results. I was diagnosed with small fiber neuropathy many years ago and the neurologist didn’t recommend anything. I have taken several different drugs but basically just lived with it.

@ridenhours44 I don’t really understand that your doctor didn’t recommend any treatment . What were the drugs that you’ve taken and did they help at all?
Can you explain more?

You know I can’t remember all of them. The last is gabapentin. I have a lot of things going on. My mouth burns all the time. My left ear rings. Both of my upper arms really hurt when I raise them and my legs hurt when I walk up steps. I have learned to live with all of this. My latest symptom is my face is pulling. Mostly at night.

Hi, I do have small fiber neuropathy which was confirmed as a diagnosis through a punch biopsy. They took 2 samples of tissue from hip/upper thigh and calf. It showed under a microscope severe damage to my small fibers. At the time (2017), I was having painful burning in my feet, especially in warmer weather and when walking. I also had sensations of pins and needles and numbness if calves and feet. After many blood tests, they ruled out everything as a cause so classified it as idiopathic. My neurologist incidentally diagnosed my iron deficiency that was causing some of my symptoms. Some can have small fiber neuropathy from vitamin B12 deficiency or B6 toxicity (too much). I am not diabetic and do not drink alcohol so that isn’t my cause. It could be due to toxic exposures (air/water/food/supplements/medications, etc.). I take alpha Lipoic acid and Acetyl l carnititne and it really helps small fiber neuropathy. When it gets really bad, people will take Cymbalta aka Duloxetine which helps with nerve/chronic pain. Small fiber neuropathy can be painful and disrupt your sleep so learning what to do/not do will help you. Good luck!

Thank you so very much. I had blood tests yesterday and have biopsy soon and a test with needles soon. I have Sjogrens and Scleroderma and I just thought it was because of those. My fatigue is the hardest to manage and now leg weakness. I appreciate your reply. Thank you. Finding a good Neurologist has helped that is understanding !

I so understand. I was trying to get into a different Doctor at mayo but haven’t been able to as yet. Mine retired at mayo leaving this month. Between my ileostomy issues completely prolapsed pelvic floor and sjogrens dryness everywhere, fatigue facing each day and weakness with walking and 4 to 5 hours of sleep is challenging.

I too have SFN. I have had it for almost 50 years. It a long time to get a diagnosis that matched my symptoms. I’ve tried several antidepressants, gabapentin and Lyrica, with no changes in my symptoms. I take Alpha Lipoic Acid, and I’m not sure it helps. But it’s so helpful to have a diagnosis after 45 years of fear and anxiety from not know what I have. I’ve made some lifestyle adjustments; primarily around the amount of time I can spend on my feet each day. Being on my feet for more than 4 hours a day is very painful. Otherwise, I’m good.

May you figure this out and find a plan that works for you.

Does anyone know if Small Fiber Neuropathy can cause cold sensitivity in the legs?

I have several auto immune including high antibodies for Sjogrens. I was having weakness down my whole right side / dominant side. Kept telling rhuemy to no avail . Biopsy done of upper and lower leg which confirmed small fiber nueropathy. Also confirmed by Johns Hopkins

This happened to me. My would discuss with ur nuerologist that u need his/ her help to confirm the dx. I was going for years with such weakness. It shouldn’t have been dismissed by my rheumy at the time.