Treatment options that have worked for Small Fiber Neuropathy

Posted by moakes @moakes, Feb 27 9:32pm

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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bettyg81pain | @bettyg81pain | Apr 16 9:13am

Am I taking the right thing? NA R Alpha Lipoic Acid 600 mg? For those of you have have suggested it. Thanks

John, Volunteer Mentor | @johnbishop | Apr 16 9:27am

In reply to @bettyg81pain "Am I taking the right thing? NA R Alpha Lipoic Acid 600 mg? For those of..." + (show)

@bettyg81pain I take 2 Na R Alpha Lipoic Acid 300 mg capsules in the morning and 2 in the evening for 1200 mg daily along with other supplements for my neuropathy which I shared in my neuropathy journey post here - https://connect.mayoclinic.org/comment/310341/.

bettyg81pain | @bettyg81pain | Apr 16 11:20am

Think I take the same ones by Immunovites-what is the difference in them as long as they don't contain S-Alpha Lipoic-do you buy yours on Amazon? Ive been taking 2 x 600 in the morning so take 1 in the a.m. and 1 in the p.m.?

John, Volunteer Mentor | @johnbishop | Apr 16 11:42am

In reply to @bettyg81pain "Think I take the same ones by Immunovites-what is the difference in them as long as..." + (show)

The Na-R-ALA 1200 mg daily is part of the protocol I take and order from here - https://theprotocolworks.com/ but if you are just taking Na-R-ALA I don't think it matters where you get it as long as it's good quality. The label should specify the contents and whether or not any S-ALA is contained.

artemis1886 | @artemis1886 | Apr 16 2:04pm

In reply to @prudencemorton "Thanks artemis1886. I too have small fiber neuropathy, so thanks for the information as per the..." + (show)

The pain cream I use is compounded by a Pharmacist. My doctor calls it in the amounts I wrote out. My compounding pharmacy printed it out for me. I will tell you this we are stationed in Germany and the Germans have used alpha lipoic acid IV for years with a lot of success. The pills do not work as well as the IV. I have worked my way up to 400 mgs (the amount is 600-1800 I just have so many drug allergies that I did not know if I would be allergic to it) have the pills. I ordered it through my pharmacist. I could not find it over the counter. I figured if I ordered it through the pharmacist they would know what I needed. So much junk on neuropathy.
https://www.mountsinai.org/health-library/supplement/alpha-lipoic-acid#:~:text=Several%20studies%20suggest%20alpha%2Dlipoic,and%20legs%20from%20nerve%20damage.

artemis1886 | @artemis1886 | Apr 16 2:05pm

In reply to @artemis1886 "The pain cream I use is compounded by a Pharmacist. My doctor calls it in the..." + (show)

I take it everyday at 2:30 I have noticed a difference. I am not waking up every morning at 2:00 am in severe pain.

NJ Ed | @njed | Apr 17 5:34am

In reply to @johnbishop "The Na-R-ALA 1200 mg daily is part of the protocol I take and order from here..." + (show)

John - I did read your post from May of 2020. I have numbness only no pain. Mayo gave me dx idiopathic sensory motor axonal PN. Damage to both small and large fiber. I see the protocol has worked to your advantage. Have you heard about protocol working with folks with damage limited to the axons? Your opinion would be helpful. I see others have tried protocol with some positive results and some uncertain results. I went on the protocol website and perhaps I missed it, but I did not see any reference to axonal PN. Ed

cherbear2cubs | @cherbear2cubs | Apr 17 6:52am

In reply to @memyselfi "I was just reading through another older thread that there well might be a connection between..." + (show)

There is proven correlation of statin use and neuropathy according to studies by NIH. I tried taking a break for 3 months from simvistatin but my lipid levels increased so went on small dose of rosuvastatin, no changes in neuropathy symptoms. It is the lesser or greater of 2 evils if you should take the statins. I am currently using red light therapy, exercise and CBD topical. I use CBD drops and melatonin for sleep.

John, Volunteer Mentor | @johnbishop | Apr 17 7:30am

In reply to @njed "John - I did read your post from May of 2020. I have numbness only no..." + (show)

Hi Ed, I have seen a few posts in the groups Facebook page by doing a search of the group but like Connect it seems like everyone is a little different. From the FAQs on their website;
"Will this help any type of peripheral neuropathy?
Yes. Peripheral nerves respond exceptionally to this nutritional supplement formula that supports accelerated healing. Short fiber & long fiber axonal damage are encouraged to heal faster."
--- https://theprotocolworks.com/faq/

I wished the Facebook groups were a little more friendly for new members questions but I understand why they expect everyone to search the group posts before asking a question. You can join the FB group using the link on the website and search through posts. I did find a response to a member from the person who started the group mentioning his diagnosis of peripheral poly neuropathy involving the long and short fiber nerves.