Small fiber neuropathy?

Thanks for sharing your story again; it’s really helpful to hear others’ experiences. Bookmarking is a great idea—I’ve started doing that too for threads like this. Small fiber neuropathy can be so challenging, especially with mobility issues. Have you found any strategies or treatments that have helped manage your symptoms?

My mobility is caused by weakness primarily. In 2016, I was stricken over a 10 day period by severe increasing leg/arm weakness accompanied by a UTI & kidney infection. On the 10th day and finally in a hospital, my knees finally buckled and I remained in a wheelchair for 6 months with extensive physical therapy that made great gains in strengthening my legs and getting balance to where I can waddle around unassisted for small distances now; but I cannot climb, do small steps or even a curb without help or a cane/walker. I cannot run, skip, or hop, but am grateful for what I can do and for being out of a wheelchair & able to drive. My hands are limited but I can now handle forks & knifes & TP!

In the hospital they tested for Guillain-Barre but it came back inconclusive because they did not obtain enough spinal fluid to test. They didn't retest because the hospital facility itself was not so specialized for neurological issues. I later went to Duke who says it's a possible I had post-infection disorder similar to GBS but there would be no treatment available for it regardless. So we're not exactly sure, but I have been tested for a lot of things that have been eliminated. I am officially labeled as Idiopathic Axonal Sensorimotor Peripheral Neuropathy, but I have never been tested for SFN. My symptoms seem to overlap both though: extreme sensitivity of hands & feet to cold (and heat); numbness & tingling from elbows to fingers, knees to toes; inability to sweat properly in heat; and general balance & weakness issues. My PN comes with a bit of pain that is managed well with Gabapentin.

So that was the long answer to the causes of my mobility issue. I spent a lot of time trying to get an exact cause so I could get an exact cure. My number one priority now is to keep strong with activity and physical therapy so I do not get worse and can live the best life possible!

Have you had a small fiber biopsy? NIH has a good continuing education paper on SFN that came out last year. Look it up under the PubMed site. Lots of current info.

No, None of my doctors over the years have felt that it would add value to my current diagnosis since they know I have axonal sensory PN. One said I couldn't also have SFN, but that has been disputed by people on here that know they have both. Regardless, the doctors have all said there is nothing they can do but help manage the symptoms, so I learn to live with it from the wealth of information and real life experience with PN on this forum!

There is a lot of new info about this condition and one of its causes, Sjogren's. And you can have SFN for a time and then it effects the long nerves. You may be able to still lessen your symptoms. Worth learning about. (BTW: I have this, too.)