Non-Length Dependent Small Fiber Neuropathy

Hi, Sounds similar to mine, which is Wartenbergs Migratory Sensory Neuropathy, a catch all for whats left after ruling everything else out! Mine is very likely autoimmune just going by medical history. Gabapentin didnt help me at all, but mucked up my speech! I am currently slowly switching from the general pain meds/antidepressants used for neuropathy to medical cannabis. Ive had it for 17 years, and its relapsing/remitting. Acupuncture has helped a lot too, especially when one nerve branch gets too out of control. I also get crawling, itching, numbness, hot/cold patches etc etc. Mine started in my feet, but can now be randomly anywhere. I just tend to think that 400 years ago I would either be being exorcised or burnt at the stake 🤣

So far, it hasn’t really helped much. Perhaps takes a bit of the edge off the symptoms. 900mg a day did seem to help for a month or so, but it stopped helping at all about 6 weeks so here I am at 2700mg a day. Definitely depends on my activity throughout the day. I walk a lot at work and the more I walk, the worse the symptoms are. Walked over 5 miles today and my feet are on fire as well as tingling and pain. I hope the 2700mg dose kicks in and helps soon. It’s very frustrating.

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.

Sounds like me almost. Anyone just suffering from tingling and numbness can thank your lucky stars. However, that's how mine started 3 years ago (at least the diagnosis of small fiber neuropathy). The litany of diagnoses I've had through years of migraines, g.i. problems, connective tissue problems...all before I was diagnosed with SFN. Focus to today. I'm on my 4th day of a "flare up" (for lack of better term) where all my symptoms; eye pain, muscle spasm, nerve pain, facial pain, earache, g.i. problems etc al ..at once rendering me dizzy to the point of nausea, off-balance and unable to drive, or work...but, they cannot do anything but "treat the symptoms as they come..." Newest to the lineup: uveitis (secondary, of course). I'm laid up so often, I get to work from home now without question (good people I work for) . The rare days I feel ok; I praise the good Lord for the blessing and always for my ability to see my family to remind me how lucky I am to be a Mom and wife in a wonderful, understanding bunch of people.

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.

Sounds like me almost. Anyone just suffering from tingling and numbness can thank your lucky stars. However, that's how mine started 3 years ago (at least the diagnosis of small fiber neuropathy). The litany of diagnoses I've had through years of migraines, g.i. problems, connective tissue problems...all before I was diagnosed with SFN. Focus to today. I'm on my 4th day of a "flare up" (for lack of better term) where all my symptoms; eye pain, muscle spasm, nerve pain, facial pain, earache, g.i. problems etc al ..at once rendering me dizzy to the point of nausea, off-balance and unable to drive, or work...but, they cannot do anything but "treat the symptoms as they come..." Newest to the lineup: uveitis (secondary, of course). I'm laid up so often, I get to work from home now without question (good people I work for) . The rare days I feel ok; I praise the good Lord for the blessing and always for my ability to see my family to remind me how lucky I am to be a Mom and wife in a wonderful, understanding bunch of people.

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.

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.

Welcome @vault, It's really good to hear your pain is finally under control. There are some discussions on central sleep apnea that you might want to read through to see what others have shared.

-- Diagnosed with Central Sleep Apnea (CSA)? How's therapy going?:
https://connect.mayoclinic.org/discussion/central-sleep-apnea-csa-suitable-therapy/
-- Can a CPAP machine treat central apneas?:
https://connect.mayoclinic.org/discussion/can-a-cpap-machine-treat-central-apneas/
-- Central sleep apnea. Cause?:
https://connect.mayoclinic.org/discussion/central-sleep-apnea-cause/
How long have you been using a CPAP machine?

So, what I've learned so far after a decade of progressive nuerapathy in my feet is this. The more load I put on my feet the worse it gets during the day. I do 900 at 8 am again at noon and at 4 then 600 at 8 pm when not on my feet so much. If it gets on fire I will rub lidocaine 4 milligram ointment on my feet and that puts out the fire in minutes but only lasts an hour or so. I've tried many different therapies and doctors. Different things seem to work for different bodies and sometimes we develop tolerances for a particular drug and must try something else. Research is a good thing but it's progressive and with over 100 different kinds of nuerapathies and little concensus on treatment we can only hope for better answers. John