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.

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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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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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Welcome @lindah007, I'm sorry to hear that you developed small fiber neuropathy as a reaction to your rabies booster shot. It can be a struggle finding a treatment that helps and works for everyone with neuropathy for many different reasons. The Foundation for Peripheral Neuropathy has a lot of good treatment information that you might find helpful:
-- Pain Management & Treatments for PN: https://www.foundationforpn.org/treatments/

You may also want to look through the many different discussions and comments from members when searching for "small fiber neuropathy what helps" - https://connect.mayoclinic.org/search/?search=small+fiber+neuropathy+what+helps.

Have you looked into any complementary or alternative treatments?

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I just came across this. My husband Mark was just diagnosed with small fiber neuropathy and has the tingling from just above the knees to his toes, getting worse but no pain. Just wanted to add that although his dr is still trying to find a separate cause for the sfn, it all started at the same time as some other issues that were diagnosed as side effects of MGUS (a rare blood disorder that in a small number can lead multiple myeloma). Another type is MGNS, which is nerve based and probably what Mark has. His other issues are lightheadedness, fatigue, anemia, and no ability to fight viruses. A uti put him in the hospital with a raging fever. It's just something you can easily get tested for with a blood draw. It's just so rare (and mostly black men, but my husband is white) that many professionals haven't even heard of it. I really hope you've found or find a cause and can start to feel 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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HI, I'm sorry you are suffering with this. I don't have it but my husband does. He wasn't open to it at first, but has found that thc/cdb gummies help him relax and sleep more deeply. No side effects, etc, especially since he takes a very small amount - 5 to 10 mg. We're in a state where this is legal, not sure if you are able to try this. If you are open to it and it's legal, a very small amount of a hybrid strain (2mg or so to start) might at least distract you but not leave you with a high feeling. I know cbd alone is out there and drug testing can be a problem, but personally believe both thc and cbd work best together.

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Profile picture for imthewife @imthewife

I just came across this. My husband Mark was just diagnosed with small fiber neuropathy and has the tingling from just above the knees to his toes, getting worse but no pain. Just wanted to add that although his dr is still trying to find a separate cause for the sfn, it all started at the same time as some other issues that were diagnosed as side effects of MGUS (a rare blood disorder that in a small number can lead multiple myeloma). Another type is MGNS, which is nerve based and probably what Mark has. His other issues are lightheadedness, fatigue, anemia, and no ability to fight viruses. A uti put him in the hospital with a raging fever. It's just something you can easily get tested for with a blood draw. It's just so rare (and mostly black men, but my husband is white) that many professionals haven't even heard of it. I really hope you've found or find a cause and can start to feel better.

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I have MGUS, SFN, and anemia and osteoporosis. When I got COVID after finally getting diagnosis of idiopathic SFN, my SFN definitely got much worse and spread. Does he also have osteoporosis?

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Profile picture for jankavs @jankavs

I have MGUS, SFN, and anemia and osteoporosis. When I got COVID after finally getting diagnosis of idiopathic SFN, my SFN definitely got much worse and spread. Does he also have osteoporosis?

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Hi, no he doesn't have that or any bone issues. The SFN is his biggest issue and it took 2 years to get that diagnosis. He was diagnosed with MGUS after getting covid, shingles, then covid again in early 2023. He had the covid vaccine and the shingrix shot, but still got both and had a hard time shaking them. Then the tingling started in his knees and has slowly spread in both directions. I hope you can find some relief, I know treatment options are so limited.

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Profile picture for jeffrapp @jeffrapp

I understand your frustration with peripheral neuropathy. It is often very difficult to diagnose accurately, and the standard treatment is often not as successful as it is in other diseases. Also, I understand how posting frustration on this forum, and connecting to others with similar experiences can be helpful.
However, your post crosses a line. Most doctors have much more than "a clue" about peripheral neuropathy, especially, of course, neurologists. It is simply a fact that PN is one of those diseases that is not yet well understood or treated. Idiopathic PN, being of unknown cause (by definition), is especially difficult. However, there is a standard diagnostic tool for small fiber PN (skin biopsy), which is well known and used frequently to make that diagnosis, contrary to what is said in your posted article.
In fact, I read part of the article you posted, and it is full of misinformation. My problem with posts such as yours is that they may discourage patients from seeking appropriate medical care. As an example, see the post above about taking too much vitamin B6.
Any honest doctor will admit that the state of the art regarding PN is less than satisfying. Also, trying new things on your own may be helpful. Every reputable medical professional is trying his or her best to help patients with a very challenging condition. They use the knowledge gained from thousands of studies (just google peripheral neuropathy) and years of training and practical experience. Obviously, this is not true of others who, without proper training or experience, are trying to make a quick buck. All of us (patients) have to be very careful of what we try and where we spend our money. The place to start is with the experts.

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I was gaslighted by at least 3 doctors who should have at least suggested further testing. Not every doctor is trying his or her best. In fact, one neurologist did great harm to me by suggesting there was nothing wrong with me.

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Profile picture for imthewife @imthewife

Hi, no he doesn't have that or any bone issues. The SFN is his biggest issue and it took 2 years to get that diagnosis. He was diagnosed with MGUS after getting covid, shingles, then covid again in early 2023. He had the covid vaccine and the shingrix shot, but still got both and had a hard time shaking them. Then the tingling started in his knees and has slowly spread in both directions. I hope you can find some relief, I know treatment options are so limited.

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It’s possible he got SFN from the Covid shot itself; that’s how I got PN.

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I got it from COVID also!!

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Hi,
I have undiagnosed idiopathic SFN and suspect it was either from Covid or the covid shot. I've also developed tinnitus that can go along with SFN and having had Covid. More research needed into this as all the anecdotal evidence suggest a strong link.
For relief pregabalin did help but the vivid dreams, the headaches and feeling wired were not great so I've reduced it as much as I can to 50mg p/day (25mg morning and night). Hope to come off it soon. Of course symptoms are back but at this stage they are more tolerable than the meds. I'm about to try TDCS Transcranial direct current stimulation. I'll let you know how I go. All the best everyone.

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