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.

memyselfi | @memyselfi | Apr 1 9:28am
In reply to @julbpat "Wow, you sound like me. Somehow I’ve maintained some sort of optimism about life in general,..." + (show)
@julbpat

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.

Jump to this post

Hi.

Thanks for the reply. I get you about the activities dropping away one by one. Skiing? Backpacking? Long walks or day hikes? The first two no way now. The last two...well I'm going to have to be realistic about the pain I'm going to have to beat down in my mind, and the amount of times I'm probably going to have to stop and let my feet cool down.

I'm reminded about that Hemingway line about how a character went bankrupt when it comes to how my PN set in for me..."Two ways. Gradually, then suddenly." As I said before in a post, I didn't know what was happening to me gradually, or where it was leading., or even what this condition was. Then one day it took up permanent residency in me. Just like that.

I'm still working as a teacher and coach, but I seriously wonder how much longer I can last. I steel my mind for the day/week ahead knowing that my discomfort and pain will be there and that it will spike at times to levels that will make me dizzy from it. It's kind of strange what happens to me on Saturdays, one of my days off. I'm somewhat of an invalid that day who doesn't even want to get off the couch. Almost as soon as I let down that steely mindset (and boy do I want to), I suddenly realize how much mental and emotional stamina I expended to get through the week.

I've got to find your story about Tegretol. And at some point I wonder what type of meds I will try to mitigate the pain and make life more enjoyable for me. As it is, I baby-stepped my way up to taking even Lyrica.

Anyway, thanks again for the reply, and much love and best wishes to you.

REPLY
proteusx | @proteusx | Apr 1 10:57am
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.

Jump to this post

I find the most useful muscle relaxer one of the oldest: carisoprodol. Sold under brand name Soma, by prescription. Can cause drowsiness and if over-used, dependence, but I find it highly effective when used for short term bouts of muscle issues.

REPLY
proteusx | @proteusx | Apr 1 11:00am
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

Hard to hold out hope at times, I know. But, for what it is worth, there are more drugs in the clinical pipeline for neuropathy than ever before and a few of them look to me to have some genuine promise, especially for neuropathic pain but also, in a few cases, for actual disease modification.

REPLY
solobeee1 | @solobeee1 | Apr 1 11:08am

I will check out Soma. Yes, there are other medication for pain but none for numbness that I know of. LDN works well for the pain & I take Xanax to relax the muscles but it also causes drowsiness. The search continues.
Thank you.
B.

REPLY
1 reply
bettyg81pain | @bettyg81pain | Apr 1 11:35am
In reply to @julbpat "Wow, you sound like me. Somehow I’ve maintained some sort of optimism about life in general,..." + (show)
@julbpat

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.

Jump to this post

Can you function pretty well taking Percocet or are you a little foggy?

REPLY
julbpat | @julbpat | Apr 1 12:39pm

At this dose, I don’t feel any grogginess. I think that my whole body, including my mind, struggles to work correctly as the neuropathy progresses. I feel foggy and have trouble with recall, unless I’m really concentrating. Sometimes I go 12-16 hours without Percocet, and I’m dull most of that time anyway.

REPLY
memyselfi | @memyselfi | Apr 1 2:48pm
In reply to @solobeee1 "I will check out Soma. Yes, there are other medication for pain but none for numbness..." + (show)
@solobeee1

I will check out Soma. Yes, there are other medication for pain but none for numbness that I know of. LDN works well for the pain & I take Xanax to relax the muscles but it also causes drowsiness. The search continues.
Thank you.
B.

Jump to this post

Interesting about Xanax and Atavin. I never considered myself as someone who lurched for meds whenever I felt discomfort, anxiety, pain, and the like. Quite the opposite (excluding things like Ibu or Tylenol).

But I'm changing in this way. Xanax/Atavin (for me) serve as a sleep aid now. I take one of these on Sunday night before Monday's work because I just can't afford to wake up tired for work at the start of the week. They mostly keep me asleep through the night. I'll occasionally use them other night when I desperately need a good night's sleep.

Now that I've got this darn thing, I'm surprised I never heard much at all about it before. It is a life changing condition. Make no mistake, at least if you're experiencing the symptoms I and others are.

Anyway...sure would be nice if scientists can come up with some real medical solutions for it.

REPLY
1 reply
solobeee1 | @solobeee1 | Apr 1 6:44pm

I take one 4.5MG capsule in the morning but I have taken it in the afternoon & evening at it seems not to make a difference, no matter the time. The pain has been reduced significantly after the first three months and has remained consistent ever since. I’ve been taking it for 13 months now. Unfortunately, it has not helped with numbness which continues ~ some days worse than others.

REPLY
solobeee1 | @solobeee1 | Apr 1 6:56pm
In reply to @memyselfi "Interesting about Xanax and Atavin. I never considered myself as someone who lurched for meds whenever..." + (show)
@memyselfi

Interesting about Xanax and Atavin. I never considered myself as someone who lurched for meds whenever I felt discomfort, anxiety, pain, and the like. Quite the opposite (excluding things like Ibu or Tylenol).

But I'm changing in this way. Xanax/Atavin (for me) serve as a sleep aid now. I take one of these on Sunday night before Monday's work because I just can't afford to wake up tired for work at the start of the week. They mostly keep me asleep through the night. I'll occasionally use them other night when I desperately need a good night's sleep.

Now that I've got this darn thing, I'm surprised I never heard much at all about it before. It is a life changing condition. Make no mistake, at least if you're experiencing the symptoms I and others are.

Anyway...sure would be nice if scientists can come up with some real medical solutions for it.

Jump to this post

Xanax does work to relax the muscles in my legs and the nerves as well. I take the smallest dose possible because it does make me tired so that when I wake up in the morning I am sometimes groggy.
I get a great soft tissue massage in PT which does the trick better than Xanax, plus exercise, especially bike riding is most helpful.
Unfortunately, nothing is long lasting so we can’t give up. Do it all as much as possible and try to stay optimistic.

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