Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Sep 6, 2019

I just wanted to pass along some ideas for those of you with idiopathic small fiber neuropathy. I am a 60-year-old female in excellent health other than the onset of this about a year ago. I do not have diabetes or any other detectable health issues.
I started some new things a few weeks ago and this week I have had some remarkable relief. I am not sure if what I have done is why, or which thing might have helped, but still wanted to pass this along just to give some of you some things to try.

I wear compression socks. This seems to help with the pain and pressure I feel in my feet and ankles.
I started taking Evening of Primrose oil twice a day.
I have cut my caffeine intake by at least two-thirds and now drink mostly green or black tea. I had heard that caffeine could irritate nerves…worth a shot.
I exercise, which I have been doing for over 20 years. I think it improves circulation which I think really helps with nerve health.
I added niacin. I will aid in blood flow, also good for circulation.
I use a cream called DMSO which i put on my feet and ankles in the morning (numbs the pain)

I don’t know if any of this could be helpful for you or not, But I seem greatly improved recently……I have tried everything and am always looking for new things to try in order to function with this awful condition.
I am still taking 600mg of Gabapentin 3 times a day and 20 mg Citalopram once a day and have been for 9 months. I do not take any other medications.

Blessings to all of you and I hope there is a cure some day. I intend to keep looking for solutions that do not require medications!

@cwallen9

Has anyone tried electrotherapy for small fiber neuropathy, specifically the ReBuilder? I read about in the book "Reversing Neuropathy" by Dr. Brian Prax. It is like a TENS unit, but it supposedly transmits nerve signals from one foot to another. It is supposed to measure your actual nerve signals and tries to cancel out the "bad" signal. I talked to a local retired physical therapist who has used it extensively and he says he has a 80% improvement rate. I made an appointment with another physical therapist to try it out. Does anyone know anything about Dr. Brian Prax? He seems to have a lot of ideas on how to relieve neuropathy symptoms.

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My son knows one person who has used the rebuilder, and swears by it. I know you can even by your own, and there are websites for it. I also saw it being sold by a chiropractor on eBay. New ones cost about 1200.00 or so, if I remember correctly. I almost bought the one on Ebay, but it just kind of bugged me why the chiropractor was selling it. He told me he just did not have much use for it in his practice, but I wondered if he was selling it because it did not help people much. I never bought one, and as I have said, I just heard about one person who has gotten relief from it. I have listened to Dr. Prax on youtube. How was his book? I almost bought it. I think he made a point though, that if a certain percentage of nerves are damaged, the neuropathy is irreversible. I think I thought mine was irreversible. He is a bright guy who does all kinds of health videos. Anyway, best of luck…Lori Renee

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@cwallen9

Has anyone tried electrotherapy for small fiber neuropathy, specifically the ReBuilder? I read about in the book "Reversing Neuropathy" by Dr. Brian Prax. It is like a TENS unit, but it supposedly transmits nerve signals from one foot to another. It is supposed to measure your actual nerve signals and tries to cancel out the "bad" signal. I talked to a local retired physical therapist who has used it extensively and he says he has a 80% improvement rate. I made an appointment with another physical therapist to try it out. Does anyone know anything about Dr. Brian Prax? He seems to have a lot of ideas on how to relieve neuropathy symptoms.

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Hi @cwallen, There is another discussion you might be interested in that discusses using the Rebuilder.

> Groups > Neuropathy > Rebuilder
https://connect.mayoclinic.org/discussion/rebuilder/

Can you let us know how your appointment goes if you try it?

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@lorirenee1

My son knows one person who has used the rebuilder, and swears by it. I know you can even by your own, and there are websites for it. I also saw it being sold by a chiropractor on eBay. New ones cost about 1200.00 or so, if I remember correctly. I almost bought the one on Ebay, but it just kind of bugged me why the chiropractor was selling it. He told me he just did not have much use for it in his practice, but I wondered if he was selling it because it did not help people much. I never bought one, and as I have said, I just heard about one person who has gotten relief from it. I have listened to Dr. Prax on youtube. How was his book? I almost bought it. I think he made a point though, that if a certain percentage of nerves are damaged, the neuropathy is irreversible. I think I thought mine was irreversible. He is a bright guy who does all kinds of health videos. Anyway, best of luck…Lori Renee

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Thanks for the input. I'll let you know if it helps me. I saw some on EBay for only $500. Dr. Prax's book sounds good if everything he says is correct. I haven't finished the whole book yet – it is pretty short. I'll have to watch his Utube video.

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@johnbishop

Hi @cwallen, There is another discussion you might be interested in that discusses using the Rebuilder.

> Groups > Neuropathy > Rebuilder
https://connect.mayoclinic.org/discussion/rebuilder/

Can you let us know how your appointment goes if you try it?

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Yes, I certainly will. Thanks for the link.

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From @burningfeetinphoenix…re. PEA update. I've been on the trial recommended PEA capsule dosage for several weeks and started the PEA topical (Soothamide 2%) on my feet a week ago. So far I have noticed some improvement in the burning. However, it has gotten cooler in Phoenix and my mail problem is heat sensitivity. I have been emailing with Dr. Kopsky, one of the Dr's from the Netherlands who does pain research and has written numerous papers on pain treatments including topical Phenytoin and other compounds. He says I should get the 10% Phenytoin compounded at a compound pharmacy. You can read several of the studies available on-line about the how this product works and several of the studies he has done showing great promise for this compounded topical cream. I cannot post a link but here is one of their case studies. You can just Google it. This will be my next "clinical trial of one"! Will keep you posted…Pam

Phenytoin Cream for the Treatment of Neuropathic Pain: Case Series
David J. Kopsky1,* and Jan M. Keppel Hesselink2

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@burningfeetinphoenix here…I have been researching personalized stem cells as a way to deal with SFN. I came across a paper published in January 2019 outlining this potential technique for helping with SFN burning pain. This is the name of the paper: "Pain relief in a neuropathy patient by lacosamide: Proof of principle of clinical translation from patient-specific iPS cell-derived nociceptors". Has anyone heard of or researched this potential treatment? Pam

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@burningfeetinphoenix

@burningfeetinphoenix here…I have been researching personalized stem cells as a way to deal with SFN. I came across a paper published in January 2019 outlining this potential technique for helping with SFN burning pain. This is the name of the paper: "Pain relief in a neuropathy patient by lacosamide: Proof of principle of clinical translation from patient-specific iPS cell-derived nociceptors". Has anyone heard of or researched this potential treatment? Pam

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Hi @burningfeetinphoenix — I found the paper and it does sound promising but the caveat is that only one person was involved in the test which leaves a lot missing.

Pain relief in a neuropathy patient by lacosamide: Proof of principle of clinical translation from patient-specific iPS cell-derived nociceptors
https://www.ebiomedicine.com/article/S2352-3964(18)30546-2/fulltext

It's also referrenced by NCBI here — Pain relief in a neuropathy patient by lacosamide
https://www.ncbi.nlm.nih.gov/pubmed/30503201
"FINDINGS: We identified patient-specific changes in iPSC-derived nociceptor excitability in MEA recordings, which were reverted by the FDA-approved compound lacosamide in vitro. Using this drug for individualized treatment of this patient, the patient's pain ratings decreased from 7.5 to 1.5. Consistent with the pain relief reported by the patient, microneurography recordings of the patient's single nerve fibers mirrored a reduced spontaneous nociceptor (C-fiber) activity in the patient during lacosamide treatment. Microneurography recordings yielded an objective measurement of altered peripheral nociceptor activity following treatment."

Liked by Lisa Lucier

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Hi @johnbishop…I am hopeful. There is an outfit called GioStar that does something similar to this…I have spoken to them and read the credentials of the Dr. who heads up GioStar. Sounds impressive but I have been "hoodwinked" before! BTW I could not get in to Mayo Jacksonville or Mayo Phoenix. They do not take patients with SFN. I am hoping the Phoenix Neurological Institute can help me. Dr. Todd Levine who as written many scholarly articles on this condition, is one of the Dr's and researchers there. I see them on October 11th. Found out they are doing two clinical trials on SFN. Pam

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@burningfeetinphoenix

Hi @johnbishop…I am hopeful. There is an outfit called GioStar that does something similar to this…I have spoken to them and read the credentials of the Dr. who heads up GioStar. Sounds impressive but I have been "hoodwinked" before! BTW I could not get in to Mayo Jacksonville or Mayo Phoenix. They do not take patients with SFN. I am hoping the Phoenix Neurological Institute can help me. Dr. Todd Levine who as written many scholarly articles on this condition, is one of the Dr's and researchers there. I see them on October 11th. Found out they are doing two clinical trials on SFN. Pam

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Hi Pam — I hope you can let us know how your appointment goes in October. It does sound hopeful but like you I've spent a lot on what seems to be a lost cause. Good luck! John

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@colleenyoung

@burningfeetinphoenix, you started a new discussion perfectly. But…I actually moved your message to an already existing discussion on the exact same topic. I did this so we can collect everyone's ideas in the same place. I'll also be interested to see links to any studies that anyone has.

BurningFeet, have you had any success with these alternatives?

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How do I find the discussion on these alternatives that you referred to?

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@burningfeetinphoenix

@burningfeetinphoenix here…I have been researching personalized stem cells as a way to deal with SFN. I came across a paper published in January 2019 outlining this potential technique for helping with SFN burning pain. This is the name of the paper: "Pain relief in a neuropathy patient by lacosamide: Proof of principle of clinical translation from patient-specific iPS cell-derived nociceptors". Has anyone heard of or researched this potential treatment? Pam

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What is the difference between small fiber neuropathy and peripheral
neuropathy?

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@terryrose

What is the difference between small fiber neuropathy and peripheral
neuropathy?

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Small Fiber Peripheral Neuropathy …all the same, shorts cuts on how it is referred to.

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@burrningfeet in Phoenix here…My understanding is small fiber neuropathy (SFN) is a specific kind of peripheral neuropathy and it too has specific kinds of forms but generally affects the small nerve fibers in the body. Peripheral neuropathy is a more general form of neuropathy affecting the nervous system of the body and and can include large and small nerve fibers Most cases begin in the feet and progress upwards but not always. Sometimes these nerve fibers are not even lost but can be damaged or injured say due to an accident or even non-functional… but there is pain but sometimes numbness or other symptoms. PN includes such things like Tarsal Tunnel Syndrome or nerve entrapment, nerve injury etc. Can include almost anything except nerves affecting the spine and brain. The scientific literature is not always clear on this as I have seen SFPN used as an acronym for Small Fiber Peripheral Neuropathy and Small Fiber Polyneuropathy…not to be confused with SFMN which affects one particular peripheral area of the body…There is an article Todd Levine that breaks SFN down into very specific types. I'll look through my files and see if I can find it. I welcome any other clarification as I am new to this…Pam

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@terryrose, @burningfeetinphoenix and @rwinney — This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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@cncwi17

How do I find the discussion on these alternatives that you referred to?

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Hello @cncwi17, Welcome to Connect. You actually posted your question in the discussion on the alternatives @colleenyoung was referring to here:

> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/

You can scroll to the top of the discussion and read through the posts in the discussion (8 pages worth now) to see the alternatives being discussed.

Are you able to share what type of neuropathy and symptoms you have?

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