Your Thoughts on a Foundation for Small-Fiber and Autonomic Neuropathy

I agree about neurologists. My pain management doctor has started me on Low Dose Naltrexone. I have been ever so slowly ramping my way to 4.5 MG. I am allergic to many pain relievers so this is my last ditch effort. So far I have had relief of my CRPS and SFN constant annoying pain. About at least 70% worth.

Ray,
I am aware of the Peripheral Neuropathy Association and donate to that foundation each month. There is another foundation called Dysautonomia International that focuses on autonomic dysfunction, with it seems a focus on POTS. However, there is not a foundation that I am aware of that focuses specifically on small-fiber neuropathy and related autonomic dysfunction and the immense pain and quality of life impact that it has.

The prevalence of SFN is, I theorize, far higher than posited by the medical establishment. There are studies demonstrating that many people diagnosed with fibromyalgia actually have SFN. This was proven via punch skin biopsy of the study participants, where 40-50% came back with reduced intraepidermal nerve fiber density (IENFD), the gold standard for a definitive SFN diagnosis. Moreover, SFN is known to impact the GI tract and the heart, amongst other organs, yet many gastroenterologists and cardiologists do not suspect SFN when patients present with cryptic symptoms. Finally, there are reports of COVID causing several SFN cases, and many long-COVID studies are ongoing. I suspect that some people suffering from long-COVID have developed SFN. Given all of this, I do wonder whether a more focused foundation would get us closer to valuable research and therapeutics as compared to a foundation covering PN generally.

Hi, I'm very interested to know more about the LDN you are taking. I want to ask my doctor to prescribe it to me because I read another comment from someone who was having success with it. I can't stand the pain I have and no one is doing anything to help me. I'm on 100mg gabapentin and I would like to wean off because I don't think it is helping. Higher dose gave me very bad side affects. If you are having even a reduced amount of pain from the LDN, can you share please what amount you are taking and started with? Thank you.

Hi there- I can relate to your experience. I have autonomic small fiber neuropathy (it’s the likely cause of my POTS, but there’s no way to prove this), and I was so upset after realizing I had peripheral neuropathy in the first place, then narrowing the diagnosis to small fiber neuropathy (which was actually misdiagnosed the first time), to find that despite the significant numbers of people affected, it’s so marginalized. By the time I got to diagnosis, it just felt like I got a collective “shrug.” There’s no cure and if the dysautonomia isn’t severe, it’s not “life-threatening,” so it seems not to matter to doctors. Or I get dismissed because it’s “outside the scope” of their expertise.

I suspect because of this, it’s not as lucrative for research or as a specialty area. More awareness could help—because it can be a struggle even to get doctors to realize someone can even have SFN without diabetes, post-chemotherapy, or B12 deficiency. I don’t know of a solution though…

I have been with a pain management doctor for 13 years. He wasn't the first , second, or third doctor I saw. Actually the 3rd doctor called my current doctor and begged him to take me off his hands. I got a phone call from my current doctor asking me to be his patient! When asked why he took me on he said he believes everybody deserves the best care and he likes a challenge! We have a close relationship and he is brilliant at what he does and I have had a spinal cord stimulator implanted in 2012 and again in 2018. I find it helpful in disguising pain to a degree. I have multiple spinal issues from a fall in 1999. a workers comp case. I use a walker for travel purposes but have a power chair for longer distances around this complex I live in.

Ray,
I am aware of the Peripheral Neuropathy Association and donate to that foundation each month. There is another foundation called Dysautonomia International that focuses on autonomic dysfunction, with it seems a focus on POTS. However, there is not a foundation that I am aware of that focuses specifically on small-fiber neuropathy and related autonomic dysfunction and the immense pain and quality of life impact that it has.

The prevalence of SFN is, I theorize, far higher than posited by the medical establishment. There are studies demonstrating that many people diagnosed with fibromyalgia actually have SFN. This was proven via punch skin biopsy of the study participants, where 40-50% came back with reduced intraepidermal nerve fiber density (IENFD), the gold standard for a definitive SFN diagnosis. Moreover, SFN is known to impact the GI tract and the heart, amongst other organs, yet many gastroenterologists and cardiologists do not suspect SFN when patients present with cryptic symptoms. Finally, there are reports of COVID causing several SFN cases, and many long-COVID studies are ongoing. I suspect that some people suffering from long-COVID have developed SFN. Given all of this, I do wonder whether a more focused foundation would get us closer to valuable research and therapeutics as compared to a foundation covering PN generally.

That’s so great that you found someone motivated to work with you, even with a “complex case.”

I do feel that with things being so specialized, it can give providers an out to decline to work with a patient if they’re uncomfortable or unwilling to take on a challenge. I’m glad you found someone who will support you.