Small Fiber Neuropathy

I’m still reading about it. I don’t understand it completely and the internet doesn’t help much. I’ve bought about 15 pairs of shoes, compression socks and a foot massage machine and a foot spa that also massages. I just ordered some different brands of socks. I’d like to talk to someone who has it and find out how they handle it. I take Gabapentin and it helps but I still can’t be on my feet longer than 15 minutes without having to sit for a while. I’m 73 and still trying to accept that I can’t do things that I used to. Hope this helps and you feel better.

Hello @cdianeb, Welcome to Connect. You are right about the Internet not helping much. There are some reputable sites but there are many more not so good that jump up first in line on the searches. I see by your other post that you have alcohol induced neuropathy, there are some related discussions for neuropathy caused by alcohol that you might want to scan through. Here is a link to the search results on Connect - https://connect.mayoclinic.org/search/discussions/?search=alcohol%20and%20neuropathy.

If you are looking to learn more, check out the Foundation for Peripheral Neuropathy. Here are a couple of links to their site that might be helpful:
--- Living Well: https://www.foundationforpn.org/living-well/
--- Foundation for Peripheral Neuropathy YouTube Channel: https://www.youtube.com/@foundationforperipheralneu4122/search?query=alcohol

I don't have pain with my idiopathic small fiber PN but do have the numbness and some tingling. I shared my story in another discussion here - https://connect.mayoclinic.org/comment/310341/

Have you looked into any alternative or complementary therapies to help with the symptoms?

On IVIG for 10 yrs and has done nothing for my neuropathy. In fact, it has gotten worse. I do IVIG for low immune globulin.

Look for a doctor who will listen to you. Seems like they won't listen and just want to rush you out for the next patient. I have the same problem.

Yes, I had low IGg also, so I thought I needed it anyway. And there PubMed papers that said it worked. I just got through with a course of Rituximab and waiting to see if that helps. Nothing like being a walking science experiment.

Unfortunately, doctors have very few drugs to try to control the pain of neuropathy. There are no drugs that seek to reverse damage to injured nerves. The one drug I was excited about that appeared to actually heal nerves was called Engensis from Helixmith. It has shown success in Phase III trials but just recently another Phase III failed to achieve the Primary Endpoint resulting in the company rethinking its use for DPN. LETS HOPE THEY WILL SEEK FDA APPROVAL!

I am an 85 yr. old retired orthopedic surgeon. For the past 8 to 10 years, I have had a peripheral neuropathy generally without pain, but with proprioceptive problems and debilitating light-headedness. I,constantly feel as if I were having orthostatic hypotension. I use a cane regularly. I’ve been taking gabapentin 900 mg. at bedtime for several years. I recently have been cutting the dose down on the advise of my best friend who is a retired vascular surgeon. No change. I also take 0.5 mg alprazolam at bedtime for sleep. I’m also taking 15mg. morphine sulfate twice daily for hip pain due to an infected prosthesis. I’ve been taking the MS for 10 years. I;ve cut down the dose frome 30 to 15 mg. This is enigmatic at best. Any thoughts? PS: I also have COPD due to chronic aspiration, not smoking.

Hello @thwheezer, You will notice that we removed your email address to protect your privacy since Connect is a public forum which makes your email address available to anyone with an Internet connection. Members can share contact information using the private message function of Connect, see the Help Center for more information - https://connect.mayoclinic.org/help-center/.

I have idiopathic small fiber PN also with no pain and have had it more than 20 years before seeking a diagnosis in 2016, mostly because all of my prior PCPs had told me there is nothing they can do for the numbness I was feeling. My PCP in 2016 prescribed gabapentin ( I think it was 200 mg daily) but I stopped taking it two weeks after starting because it wasn't helping the numbness. Then after a short conference with my Mayo PCP and her team and a few questions about my symptoms, they agreed and their team lead told me that gabapentin doesn't help with numbness, only for the related pain with neuropathy.

Just a thought but I wonder if your retired surgeon friend may be onto something with drug interactions with gabapentin. I have read that there are some drug interactions with morphine listed as one of the drugs.

"Gabapentin can interact with losartan, ethacrynic acid, caffeine, phenytoin, mefloquine, magnesium oxide, cimetidine, naproxen, sevelamer and morphine. Gabapentin use is contraindicated in patients with myasthenia gravis or myoclonus."
-- Review about gabapentin misuse, interactions, contraindications and side effects:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5308580/

I was prescribed gabapentin for my lifelong anxiety disorder, and it was a disaster. Whereas it resolved some anxiety, it also erased my personality and my normal sense of self. You could characterize that as depersonalization or "zombie effect." I felt that the "zombie effect" was much worse than the anxiety. And, then, because gabapentin is subject to discontinuation syndrome, it took one month to wean off, being very conservative on dose reduction.

When my neurologist prescribed it, I refused. It appears to work simultaneously on two pathways, neurological and anxiolytic. The pathways end up being conflated and there is no separation when you take this medication. I told my neurologist that my brain was more important than my leg and she understood. If, in fact, in the future, my pain becomes intolerable I will re-visit gabapentin, asking my neurologist if I can take a very small sub-therapeutic dose, to evaluate my mental status and see what I can do. But that's for the future and this is now. My Mom was also diagnosed with PN but I do not know the specific diagnosis. She too had problems with gabapentin making her feel "loopy" and finally declined it. For persons without psychiatric disorders gabapentin is probably a surer bet.

Please define: " proprioceptive."