Treatment options that have worked for Small Fiber Neuropathy

Posted by moakes @moakes, Feb 27, 2024

I am a new member to the Neuropathy group and looking to find information about what has worked for others to reduce their neuropathy pain and improve their condition. My pain started a few years ago in my forearms and spread to the rest of my body in September of '23. I was diagnosed with SFN in October. I've had some pain relief from Lyrica + Cymbalta, but pain in my feet is getting worse making it painful to walk. Been trying acupuncture, dry needling, and PEMF as alternative treatment but no noticeable improvements to date.

Interested in more discussions like this? Go to the Neuropathy Support Group.

If you haven't already seen this, the Foundation for Peripheral Neuropathy has a pretty comprehensive list of neuropathy treatments on their site here - https://www.foundationforpn.org/treatments/,

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Profile picture for moakes @moakes

@johnbishop thank you so much for the resources. I'll definitely check them out. Unfortunately I have seen a primary care doctor, 2 neurologists, and a rheumatologist and they can't seem to find a cause. I have had many tests and scans done as well as a skin biopsy but no real root cause. I had a positive ANA test which can indicate an autoimmune disorder but the neurologist also said it can be positive for healthy adults. I feel like there is still something there to investigate but the neurologists seem stumped at this point. not giving up on finding the cause or seeing what treatments might help.

I requested an appointment at Mayo Clinic but was turned down as they stated they have more requests than appointments available and based on what I have done so far they didn't know if they could do anything further. I was really disappointed by this decision as I know they are the best hospital in the world and hoped they could take what I had done so far and help me find a cause and solution to help.

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@moakes My neuro doctor wanted to try IVIG infusions. My insurance denied me of it though because they don't allow it for polyneuropathy w/o an immune system problem. That treatment helps for neuropathy from an immune system problem. If ANA shows something then maybe you can get it? God bless you and will pray you get better.

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Profile picture for lindah007 @lindah007

I was diagnosed a year ago with small fiber neuropathy. It is believed to have been an autoimmune reaction to a rabies booster shot, however there is no way to prove that- but it began 3 days after the shot. I have tried various medications and presently doing IVIG therapy every other week along with Cymbalta and Lyrica. The medications have definitely numbed my pain, and I am not finding a huge difference from the IVIG Therapy. I have been doing the IVIG every other week for a little over 6 months. I have heard it can take years to help. Have anyone else heard of any treatments that can help heal the body?

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@lindah007 I’m having same thing started right after rabies vaccine with rabies immune globulin. I’m now bouncing around from rheumatologist, ENT,
Neurologist.
Have you found any relief? My
Toes are essentially numb, fingers and knees tingly all of the time. Plus I have high cardiolipins.

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Shellie,
I have been having IVIG. Therapy now for about 1 1/2 years. I’m on numerous medications also to help me get through the day by day. I have tried numerous others. I am hopeful the IVIG is helping because I’m better off than I was 2 years ago.

Where do you live? I’m in NJ. I’m happy to talk via email, text or on the phone if you want.

It can be a long haul. It was my neurologist who got me started on the IVIG. It’s technically not approved for SFN and it’s not a guarantee to help but it’s the only possible cure that I have heard about.

Linda

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