1. < Neuropathy

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.

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

myrnalf55 | @myrnalf55 | Mar 28 5:48pm
In reply to @johnbishop "Welcome @susanmarian, You are on the right track learning as much as you can about the..." + (show)
@johnbishop

Welcome @susanmarian, You are on the right track learning as much as you can about the condition and what can help provide some relief. One of the better sites for learning that I have found is the Foundation for Peripheral Neuropathy. Lots of great information including:
-- Living Well with PN: https://www.foundationforpn.org/living-well/
-- Complementary and Alternative Treatments: https://www.foundationforpn.org/wp-content/uploads/2020/08/Complementary-and-Alternative-Treatments-Revised-2020-final.-1.pdf
-- Past Webinars: https://www.foundationforpn.org/past-webinars/

Another thing you might find helpful to connect with others with similar symptoms is to open the search link at the top of any Connect page and do a search. Have you tried the search function on Connect?

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John, can you give the link again to the posts that tells about Vicks vapor rub and where the capsaicin can be found. I lost the link.
I first used the Vicks and that helped but decided later to try the capsaicin cream. I found after a few weeks of the capsaicin cream to give my feet a rest. Most of my tingling has stopped. Once in a while I can feel it in my feet after sleeping well all night and still in the bed. I manage to get my feet to relax and it stops again. If it comes back like before I will put the capsaicin cream on the top and bottom of my feet again, but not on the toes, it is a little to strong for them.
Thanks for your help.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Mar 28 6:29pm
In reply to @myrnalf55 "John, can you give the link again to the posts that tells about Vicks vapor rub..." + (show)
@myrnalf55

John, can you give the link again to the posts that tells about Vicks vapor rub and where the capsaicin can be found. I lost the link.
I first used the Vicks and that helped but decided later to try the capsaicin cream. I found after a few weeks of the capsaicin cream to give my feet a rest. Most of my tingling has stopped. Once in a while I can feel it in my feet after sleeping well all night and still in the bed. I manage to get my feet to relax and it stops again. If it comes back like before I will put the capsaicin cream on the top and bottom of my feet again, but not on the toes, it is a little to strong for them.
Thanks for your help.

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@myrnalf55, is this the discussion you were looking for?
--- Vick’s Vapor Rub for Neuropathy Pain: https://connect.mayoclinic.org/discussion/vicks-vapor-rub/

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chapanddrew8 | @chapanddrew8 | Mar 29 8:17am
In reply to @moakes "Chris @artscaping , thank you for the message. my skin biopsy actually was negative but I..." + (show)
@moakes

Chris @artscaping ,

thank you for the message. my skin biopsy actually was negative but I was told it could have been a false negative. most of my pain is manageable with 200mg of Lyrica 3x per day and 60mg of Cymbalta 1x per day, except my feet. they hurt pretty bad when I walk or stand for more than a few minutes.

I have been trying options such as dry needling, PEMF therapy, and acupuncture. not seeing any improvements from these treatments.

I have heard of myofascial release therapy but haven't tried it. has it worked well for you with pain in your feet? Have you heard of or tried Zone Therapy?

I appreciate you sharing what's worked for you.

Matt

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Currently, I could never take Cymbalta, or Lyrica. I had a triple bypass due to high calcium hyperparathyroidism. At this point, I only use, ice braces from Amazon. I put them on at night after a hot shower so I can rest well. I can feel a pain vibration in my feet that go up to my butt. Which throws my balance off. I do believe it’s time for research for this condition, instead of putting our liver and also allergic reactions to pain medication is very disturbing and can kill you. It’s time for the research.

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solobeee1 | @solobeee1 | Mar 30 7:34am

For Years - everyone has been asking for research conclusions but we have been given no answers. I had the worst day in 16 years yesterday - excruciating stiffness & numbness running from my toes to my thighs- hardly able to walk. A Xanax calmed me down a bit but I’m sure my days aren’t going to get easier. LDN keeps the pain away - thank the gods. But for the first time ever I’m not optimistic about the future.
One last question - does anyone know of a muscle relaxer that works better than Xanax?
Thanks guys - I’m not giving up!
B.

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2 replies
govisri | @govisri | Mar 31 5:56am
In reply to @solobeee1 "For Years - everyone has been asking for research conclusions but we have been given no..." + (show)
@solobeee1

For Years - everyone has been asking for research conclusions but we have been given no answers. I had the worst day in 16 years yesterday - excruciating stiffness & numbness running from my toes to my thighs- hardly able to walk. A Xanax calmed me down a bit but I’m sure my days aren’t going to get easier. LDN keeps the pain away - thank the gods. But for the first time ever I’m not optimistic about the future.
One last question - does anyone know of a muscle relaxer that works better than Xanax?
Thanks guys - I’m not giving up!
B.

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Could you please let us know what is LDN ? Thanks.

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memyselfi | @memyselfi | Mar 31 8:54pm

It's nice to have a site such as this to get a better handle on this insidious little monster. I am just reaching the point where I'm ready to toss Lyrica aside. I know it's only been a little more than five weeks, but I can't discern even the slightest improvement in terms of pain mitigation. I have another neurologist appointment on Wednesday when I will ask my Dr. if I should drop it, give it more time, or even increase my dosage. I may sound pessimistic, but I don't think it's going to work or help me.

I'm starting to come to the conclusion, from all I've read here and from all I've gathered from various other sources, that there's really no cure for it (at least the kind of neuropathic condition I and others have), not much hope for reversing its course, and that it's entirely a hit or miss proposition in terms of finding a pain mitigation program that truly and noticeably reduces the cycles of pain that I'm growing accustomed to.

For the first time in my life I'm facing the reality that I'm becoming an invalid of a sort. I've been lucky most of my life when it comes to my health. This is the first time I've faced a life changing health issue. I now have to take into account my neuropathic condition when it come to making decisions about so many things, such as the kind of vacation I might take, or how I might enjoy my weekend away from work.

Anyway...it's nice to hear possible courses of action to take, and just to hear others stories and challenges with this particular health issue.

REPLY
4 replies
Mentor
John, Volunteer Mentor | @johnbishop | Apr 1 8:02am
In reply to @memyselfi "It's nice to have a site such as this to get a better handle on this..." + (show)
@memyselfi

It's nice to have a site such as this to get a better handle on this insidious little monster. I am just reaching the point where I'm ready to toss Lyrica aside. I know it's only been a little more than five weeks, but I can't discern even the slightest improvement in terms of pain mitigation. I have another neurologist appointment on Wednesday when I will ask my Dr. if I should drop it, give it more time, or even increase my dosage. I may sound pessimistic, but I don't think it's going to work or help me.

I'm starting to come to the conclusion, from all I've read here and from all I've gathered from various other sources, that there's really no cure for it (at least the kind of neuropathic condition I and others have), not much hope for reversing its course, and that it's entirely a hit or miss proposition in terms of finding a pain mitigation program that truly and noticeably reduces the cycles of pain that I'm growing accustomed to.

For the first time in my life I'm facing the reality that I'm becoming an invalid of a sort. I've been lucky most of my life when it comes to my health. This is the first time I've faced a life changing health issue. I now have to take into account my neuropathic condition when it come to making decisions about so many things, such as the kind of vacation I might take, or how I might enjoy my weekend away from work.

Anyway...it's nice to hear possible courses of action to take, and just to hear others stories and challenges with this particular health issue.

Jump to this post

@memyselfi, Love the member name you chose, kind of reminds me of one of my old catch phrases - "Who Me?".🙃 While there is really no cure at the moment for neuropathy, I think we all hold out hope for that magic bullet that will make it all go back to the way it was before. I think the worse thing about neuropathy is we lose some ability to do the things we used to love doing and that is the pits. I've been working on acceptance and finding other things that I love and can do with my limited abilities. The Foundation for Peripheral Neuropathy site has some information that I scan on a regular basis hoping for something new that might help.

--- Living Well with Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

Hoping you can find something you love and able to do easily.

REPLY
1 reply
julbpat | @julbpat | Apr 1 8:29am
In reply to @memyselfi "It's nice to have a site such as this to get a better handle on this..." + (show)
@memyselfi

It's nice to have a site such as this to get a better handle on this insidious little monster. I am just reaching the point where I'm ready to toss Lyrica aside. I know it's only been a little more than five weeks, but I can't discern even the slightest improvement in terms of pain mitigation. I have another neurologist appointment on Wednesday when I will ask my Dr. if I should drop it, give it more time, or even increase my dosage. I may sound pessimistic, but I don't think it's going to work or help me.

I'm starting to come to the conclusion, from all I've read here and from all I've gathered from various other sources, that there's really no cure for it (at least the kind of neuropathic condition I and others have), not much hope for reversing its course, and that it's entirely a hit or miss proposition in terms of finding a pain mitigation program that truly and noticeably reduces the cycles of pain that I'm growing accustomed to.

For the first time in my life I'm facing the reality that I'm becoming an invalid of a sort. I've been lucky most of my life when it comes to my health. This is the first time I've faced a life changing health issue. I now have to take into account my neuropathic condition when it come to making decisions about so many things, such as the kind of vacation I might take, or how I might enjoy my weekend away from work.

Anyway...it's nice to hear possible courses of action to take, and just to hear others stories and challenges with this particular health issue.

Jump to this post

Wow, you sound like me. Somehow I’ve maintained some sort of optimism about life in general, even though I live with constant pain, and the activities I love have dropped away one by one. Facebook Memories is great for reminding me of this. Here I am two years ago, hiking with a group, with a joyful smile! Here I am 20 pounds lighter, with no permanently drawn brows from constant worry and pain! My career ended prematurely. My finances are in disarray.
But depression and hopelessness don’t seem like a good option for me. Because then what would I do?
As far as pain control, please read my story about Tegretol (carbamazepine). Probably because of the type of length-dependent small fiber neuropathy I have, it works for the burning pain when nothing else did. It’s a different seizure medication. My story is kind of interesting.
I also have Percocet 7.5 mg, my dose is 1/2 pill up to three times per day. It helps. I don’t give a flying flip if long- term opioid use is a bad idea. It helps my overall pain and gives me a break.

REPLY
2 replies
memyselfi | @memyselfi | Apr 1 8:47am
In reply to @johnbishop "@memyselfi, Love the member name you chose, kind of reminds me of one of my old..." + (show)
@johnbishop

@memyselfi, Love the member name you chose, kind of reminds me of one of my old catch phrases - "Who Me?".🙃 While there is really no cure at the moment for neuropathy, I think we all hold out hope for that magic bullet that will make it all go back to the way it was before. I think the worse thing about neuropathy is we lose some ability to do the things we used to love doing and that is the pits. I've been working on acceptance and finding other things that I love and can do with my limited abilities. The Foundation for Peripheral Neuropathy site has some information that I scan on a regular basis hoping for something new that might help.

--- Living Well with Peripheral Neuropathy: https://www.foundationforpn.org/living-well/

Hoping you can find something you love and able to do easily.

Jump to this post

Hi.

Thanks for the reply and the link. It's funny, but being somewhat new to PN as a chronic everyday condition, my mind still tends to think I don't have it when making various plans to do things. Then it hits me when the moment comes that I didn't make allowances for the fact of the discomfort and pain that was surely going to come into play.

Yeah, finding the silver bullet would be nice. 🙂

Thanks again for the response and link.

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