Small Fiber Neuropathy

@artscaping thank you for reaching out. I finally got diagnosed with SFN last week. I had been diagnosed with neuropathy, but last week (after 4 years) was the first time I had heard SFN. I have been through most of the major nerve medications, e.g. gabapentin, cymbalta, etc. I am currently on 150mg of Lyrica 3 times a day and I take tramadol for the pain. At night I use trazadone for my sleep. I have had nearly every test done related to blood and otherwise. I have had MRIs, spinal tab and the skin biopsies. My SFN has been so severe that I just went out on disability and I am going through all of the same steps again. I have an MRI of my brain scheduled in 2 weeks and my skin biopsy in 3 weeks. I've spoken to over 50 medical professionals over the past 4 years and don't really get any answers. I 100% believe that my neuropathy started due to HSV 2 exposure. After doing a lot of research, I believe there are a lot of people that suffer with the same issues I have and continue to get ignored and/or misdiagnosed. There are a couple promising clinical trials for a therapeutic vaccine for HSV 2. I truly believe that is my only hope for some sort of relief (similar to shingles vaccine). My latest attempt at some relief was ketamine treatment. It did nothing for me and I don't recommend it. I'm looking forward to contributing to this group and I hope we can all find some relief. BTW, I spoke to the Mayo Clinic several times and was denied even an appointment. I'm not sure there is much more they can do, but it was a bit frustrating..

I believe my SFN was caused by the shingles vaccine. I do hope you find some relief

Good evening @blaircrossan. I so appreciate your follow-up. It does appear that you have been tested and tested and tested. My neurologist also made me have an MRI. The report was all he found on my brain was normal aging evidence.

Also this evening, I would like to ask you if your first name is Blair. I have a wonderful nephew named Blair and his vision pops in my head when I see your posts.

Regarding those 50 medical professionals. That seems overwhelming. Was there any consistency at all?

Regarding, the Mayo Clinic, I am sorry that your request for an appointment was unfulfilled. How did you apply? Online? or by paper submission? When you spoke to the admission personnel, was there a reason given? I also applied twice and was not accepted even though I am a mentor. Some departments have more demand than others. Did you by chance, apply for Internal medicine?

I do know that Mayo medical providers can and do contact your current doctors if a consultation may be helpful. There are also Mayo extension facilities in and around other states. Would you like a list of the locations?

May your life be at peace.

Chris

Can someone who is experiencing pain from sfn tell me if the burning or pain is always present? Is is likely to have no burning, numbness or pain for over 24 hours, without taking medication?

I’m sure everyone is different. My burning and pain is not always present. Sometime's it’s more numbness. Depends on activity or sometimes I don’t know what causes the flare ups. I am lucky in that it is actually better when I go to bed so I can get some sleep, although not too much because one of my medicines sometimes gives me insomnia.

I experience all of these - pain, burning and numbness. The numbness is minimal, mostly my fingertips. I’m trying to think how to answer your question. I am on pretty high doses of carbamazepine (Tegretol) and take Effexor to dull nerve pain. I take Percocet. My body language and instinctive activity choices tell me that pain, even if I’m often oblivious to it in the moment, is with me constantly. I just rarely dwell on it. I know how to minimize it by avoiding activities I used to do, and living differently than I did pre-SFN (eight years ago).

I’m trying to come to terms with my condition not being SFN. My symptoms are now almost all gone. Or have been for the last few days. Even the numbness. It’s a mystery. I never did have pain, just tingling, numbness and burning. My neurologist said it wasn’t neuropathy and I believed him, but did wonder if he made a mistake. I appreciate your input.

That’s amazing that your symptoms have improved. I can’t really speak for your doctor of course, but the symptoms you describe are all symptoms of small fiber (or in some cases large fiber) neuropathy.

My symptoms are the same; I very rarely had what I’d describe as pain, like “ouch” pain, but numbness, tingling, etc. are still considered variations of pain, and I have small fiber neuropathy.

I’m not sure if this would explain your doctor’s response at all but the first neurologist I saw said I was fine; it wasn’t until I saw the next neurologist who had experienced treating SFN that she diagnosed it. At the time I suspected some physicians just aren’t as familiar with this type of neuropathy because it’s usually a clinical diagnosis (no objective test because an EMG won’t catch it). I’ve been had a skin punch biopsy (the more common way to diagnose it), but my numbers were “low normal.” Even so, that test can miss 30% of cases (per my neurologist). So while there is no objective “proof” of the diagnosis, I still have the symptoms, and therefore the condition.

It took me a long time to accept this, and it’s a long story, but I have multiple other conditions that also are clinical diagnoses—made based on my symptoms and experience, but as of now, no test exists. It’s sadly common. And these are often the conditions that have no known cure.

I don’t know if that helps. But it sounds as though I have the same symptoms and I have SFN.

@emo.

I get what you’re saying and I agree, but I specifically asked the neurologist about SFN. He said no, you don’t have that. He is a pain specialist, so I would think a lot of his patients have neuropathy pain. I actually saw this neurologist many years ago for a stubborn back spasm. I got therapy in his office’s building. There were many patients there for therapy. I recall thinking it was sad their feet were so painful. They were his patients. So I know he’s treated diabetic neuropathy pain for a long time….like 20 years.

I just don’t know why he would not recognize mine. Oh, I’ve also had 2 orthopedic podiatrists tell me that they didn’t think it was neuropathy. Lol So………I’m not sure what to think.

If it returns, then I guess I’ll just have to revisit it. If not, all is well. I’m working on my diabetes control as hard as I can. There really isn’t anything more I can do with the diabetes. Trying to get it as low as possible. And, my B12 is now good. Not much I can do about Post Covid Syndrome. Just waiting on that. My smell/taste disorder persists.

Sounds like you went through many meds. I have SFN too but doc said best guess is from taking Prograf/Tacrolimus immune surpressant for 18 years at that time. I had a liver transplant in 2000. Then again in 2017. In 2018 the pain started in my feet. Now I take Pregabalin 100mg 2x day. Plus 3 years ago I got a Med Marj Card in my state and now use CDB and THC at night before usual bedtime. It helps me sleep and it still in my system in the morning so during the day the previous nights doses are much weaker but still helping.