Non-Length Dependent Small Fiber Neuropathy

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Happy to hear lidocaine helps you with the burning. I have the 4% Aspercreme and it doesn’t help. I’ve tried a ton of topicals and none of them help. I’d love some relief from the burning and pain.

I was finally definitively diagnosed with Small Fiber Polyneuropathy after the puzzle piece of Gastroparesis was added to my long list of disparate symptoms and my neurologist ordered an IENF Skin Biopsy.
My symptoms started three years before that after a day at Disneyland walking and standing for hours.
I could hardly walk to the car, and suffered level 7 BURNING, tingling, numbness, parenthesis’s, etc., that kept me from sleeping/dreaming for 3 years before I saw a podiatrist who diagnosed bilateral plantar fasciitis with bilateral Achilles Tendonitis. He tried cortisone injections which did nothing. Neither foot braces, resting feet, Lidocaine patches nor ice helped.
My PCP referred me to a neurologist who prescribed 300 mg Gabapentin which did nothing.
He titred up my Gabapentin to 300 mg Gab 3 x per day (900 mg total daily) PLUS Cymbalta (Duloxitine) 60 mg, and the burning went away!! He said the Gabapentin blocks the pain signals from my feet/lower legs, and the Duloxitine blocks the pain Receptors in my brain. Coincidentally, the pain receptors in the brain are in the same region that controls Depression. No wonder pain and depression go together, and that is why the Cymbalta (Duloxitine) plus Gabapentin works together to control symptoms for me. My pain has been controlled for over a year! I resisted the depression piece at first because I didn’t understand the pain/brain connection. When you need to control things, accepting "DEPRESSION" is hard.
I’ve recently been diagnosed with Central sleep apnea, and will have an in-lab sleep study.
Hopefully, this isn’t a progression of my autonomic symptoms.
Another weird symptom - when I gasp for air, my lower legs tingle! This has improved since starting AutoSet CPAP. Sleep lab results should be interesting.

So would I it's excrutiating isn't it ......

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Non-Length Dependent SFN- who else has this diagnosis?

Recently DX with this definitively from skin biopsy. Of course as everyone who has gone through the lengthy diagnosis process knows , they don’t know a whole lot about this specific type of neuropathy. At the end, it is still just “treat the symptoms and hope it doesn’t progress. 2 possible causes for me: B6 toxicity from multivitamin with 3x the amount needed that I haven’t taken for 2 months and the other one that it could also be: autoimmune, specifically 35 years of Crohn’s disease. Neuro still doing testing to rule out other underlying causes. Current symptoms for me are in the feet: tingling, numbness, burning and pain. Odd and unsettling combo that I feel every minute I’m awake. On 2700mg gabapentin and it helps a bit, but you basically just have to push throuugh. I’ve had symptoms for 2 years and I’m fortunate I live near the Texas Medical Center and have lucked into having a neuro who specializes in SFN.

Happy to hear lidocaine helps you with the burning. I have the 4% Aspercreme and it doesn’t help. I’ve tried a ton of topicals and none of them help. I’d love some relief from the burning and pain.

Have you tried the Australian topical called Outback? I bought some but scented things trigger migraines for me so I didn't get to actually try it. I hear some great things about it.

I was on 1800mg of Gapapentin but it didn't work. Getting side effects coming off it gradually had last one today. I was highly anxious and shaking last two mornings. I asked two pharmacists who said it would be withdrawal symptoms. Anyway I am starting Pregabalin 100mg per day to start. Two weeks at that then increase dosage by GP. Not pleased at having to wait two weeks but that's how my GP operates.

I have same as you in feet and my lower legs. Incredibly painful and uncomfortable. I just wish it would go. I get very depressed as I feel this is it now. I have had it for 2 and half years. I was in Gapapentin but off it from today and going on Pregabalin. Feeling a bit shaky and nauseas withdrawal from coming off forner. Tapered off them but in 600mg stages which is probably why. Both tablets are very powerful. Gapapentin did not work for me basically so now it's wait and see with Pregabalin.