1. < Neuropathy

What helps the symptoms of Small Fiber Neuropathy?

Posted by margie1234 @margie1234, Dec 12, 2021

Good morning
I know most members here have more severe symtoms than I.
I woke up one morning in august with both feet tingling and with a sandy like feeling under my toes and bottom of both feet. I had no previous warning. My family doctor said that is strange maybe it will fo away on its own?? I had a short assessment with a poditrist which cost me $95 dollars and he said I had beginnings of small fiber neuraphy buy cushioned insoles and come back if it gets worse. To see a neurolagist here is 3 year wait and I have no coverage I am at my wits end on what to do for this. I thought only diabitics got this. My anxiety level is off the wall. I have researched on line and do stretches and walk. Any advice on what to do to possibly stop the tingling would be so much appreciated. Margie

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stevemoyt | @stevemoyt | May 31, 2023

I am seventy years old and have had PN for at least seven years. It started with my second toe on each foot becoming numb, and then one morning I discovered that the numbness had spread to my other toes and then to the balls of my feet. Now my feet feel sore, the big toe on both feet curls up, and my ankles bother me at times; my calves are sore. For the last few weeks I get a temporary muscle spasm in my left calf in the morning while laying in bed, but it goes away fairly quickly. I found out a few days ago that I have a torn meniscus in my left knee, which I probably had for some time, but it was aggravated by playing too much pickleball, which doesn't help. Mostly the periphery of my calves and thighs remain achy. My feet feel like my tendons are being stretched. I've been to a few neurologists who can do nothing. There isn't a lot of pain so far, so I haven't taken gabapentin. Any suggestions as to what I should do next? Thanks.

REPLY
4 replies
su8 | @su8 | Jun 1, 2023
In reply to @stevemoyt "I am seventy years old and have had PN for at least seven years. It started..." + (show)
@stevemoyt

I am seventy years old and have had PN for at least seven years. It started with my second toe on each foot becoming numb, and then one morning I discovered that the numbness had spread to my other toes and then to the balls of my feet. Now my feet feel sore, the big toe on both feet curls up, and my ankles bother me at times; my calves are sore. For the last few weeks I get a temporary muscle spasm in my left calf in the morning while laying in bed, but it goes away fairly quickly. I found out a few days ago that I have a torn meniscus in my left knee, which I probably had for some time, but it was aggravated by playing too much pickleball, which doesn't help. Mostly the periphery of my calves and thighs remain achy. My feet feel like my tendons are being stretched. I've been to a few neurologists who can do nothing. There isn't a lot of pain so far, so I haven't taken gabapentin. Any suggestions as to what I should do next? Thanks.

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Gabapentin is a drug for epilepsy. I took it for neuropathy. Gave me brain fog. Careful with alcohol in your mouthwash, you will feel icky. No alcohol. Brain fog, that’s all it’s good for.
PT, certified acupuncturist,herbalist. I know others have said acupuncture didn’t work, I think they did not do their research for the right person. It is not one time treatment. It takes months.
I’m tired of doctors not paying attention.
I went to pain management, and I told them acupuncture has helped a lot. He was very mad. Never mentioned it in the notes. Sad times. Ya, pain management doctor.

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Mentor
Don Higgins, Volunteer Mentor | @dsh33782 | Jun 1, 2023
In reply to @stevemoyt "I am seventy years old and have had PN for at least seven years. It started..." + (show)
@stevemoyt

I am seventy years old and have had PN for at least seven years. It started with my second toe on each foot becoming numb, and then one morning I discovered that the numbness had spread to my other toes and then to the balls of my feet. Now my feet feel sore, the big toe on both feet curls up, and my ankles bother me at times; my calves are sore. For the last few weeks I get a temporary muscle spasm in my left calf in the morning while laying in bed, but it goes away fairly quickly. I found out a few days ago that I have a torn meniscus in my left knee, which I probably had for some time, but it was aggravated by playing too much pickleball, which doesn't help. Mostly the periphery of my calves and thighs remain achy. My feet feel like my tendons are being stretched. I've been to a few neurologists who can do nothing. There isn't a lot of pain so far, so I haven't taken gabapentin. Any suggestions as to what I should do next? Thanks.

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I developed neuropathy in my feet a few months after successful radiation and chemo treatment for esophageal cancer tumor. I am signed up to see acupuncture MD next week but am not expecting quick fix. I did find this link to research on neuropathy helpful:
https://www.foundationforpn.org/living-well/
How many acupuncture treatments does it take to help?

REPLY
1 reply
kenab | @kenab | Jun 1, 2023
In reply to @stevemoyt "I am seventy years old and have had PN for at least seven years. It started..." + (show)
@stevemoyt

I am seventy years old and have had PN for at least seven years. It started with my second toe on each foot becoming numb, and then one morning I discovered that the numbness had spread to my other toes and then to the balls of my feet. Now my feet feel sore, the big toe on both feet curls up, and my ankles bother me at times; my calves are sore. For the last few weeks I get a temporary muscle spasm in my left calf in the morning while laying in bed, but it goes away fairly quickly. I found out a few days ago that I have a torn meniscus in my left knee, which I probably had for some time, but it was aggravated by playing too much pickleball, which doesn't help. Mostly the periphery of my calves and thighs remain achy. My feet feel like my tendons are being stretched. I've been to a few neurologists who can do nothing. There isn't a lot of pain so far, so I haven't taken gabapentin. Any suggestions as to what I should do next? Thanks.

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Hi all who suffer from PN
Same stories over all
I’ve dealt with this for 20 some years. Advanced most in last few years. Besides numbness I’ve noticed weakness in ankles and lower legs. Bothers me that no help from Med field. So we have balance problems. And weakness when doing anything. So what can we do?
Only thing I know of to avoid a wheel chair in future is work hard on weights swimming stretching and massage. Walk as much as u can however slow. With 10# wts I Dosquats two sets of 10 each. Keep ur muscles as strong as they can be. No drugs I know help. If u have no pain u are fortunate. Keep in shape if u can. Hot tub jets good too.
K in NC

REPLY
su8 | @su8 | Jun 2, 2023
In reply to @dsh33782 "I developed neuropathy in my feet a few months after successful radiation and chemo treatment for..." + (show)
@dsh33782

I developed neuropathy in my feet a few months after successful radiation and chemo treatment for esophageal cancer tumor. I am signed up to see acupuncture MD next week but am not expecting quick fix. I did find this link to research on neuropathy helpful:
https://www.foundationforpn.org/living-well/
How many acupuncture treatments does it take to help?

Jump to this post

I would suggest you research acupuncture in your area. Doctor not necessarily.. depending on where you live, I got lucky, very lucky, my person trained in the state of Washington and has numerous accolades.
It takes months of Acupuncture. It is a cumulative. I had 36 needles and I still do but, when I first got my treatment, I did not feel the needles and now I’m starting to be able to feel the needles, things are waking up. It is cumulative !! I’m also drinking the Chinese tea, helping with my insides, truly.
Depending on what state you’re in Medicare might help pay for it, not in the state I am in it’s pretty backwards here

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Moderator
Amanda Roe | @amandajro | Jun 3, 2023
In reply to @stevemoyt "I am seventy years old and have had PN for at least seven years. It started..." + (show)
@stevemoyt

I am seventy years old and have had PN for at least seven years. It started with my second toe on each foot becoming numb, and then one morning I discovered that the numbness had spread to my other toes and then to the balls of my feet. Now my feet feel sore, the big toe on both feet curls up, and my ankles bother me at times; my calves are sore. For the last few weeks I get a temporary muscle spasm in my left calf in the morning while laying in bed, but it goes away fairly quickly. I found out a few days ago that I have a torn meniscus in my left knee, which I probably had for some time, but it was aggravated by playing too much pickleball, which doesn't help. Mostly the periphery of my calves and thighs remain achy. My feet feel like my tendons are being stretched. I've been to a few neurologists who can do nothing. There isn't a lot of pain so far, so I haven't taken gabapentin. Any suggestions as to what I should do next? Thanks.

Jump to this post

Hello @stevemoyt and welcome to Mayo Clinic Connect. I found another discussion on this same topic so you will notice I have moved your post here:
- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/

Members @su8 @dsh33782 and @kenab have joined you to share with you already.

Have you talked to your neurologist about physical therapy as a potential recommendation?

REPLY
1 reply
solobeee1 | @solobeee1 | Jun 4, 2023
In reply to @amandajro "Hello @stevemoyt and welcome to Mayo Clinic Connect. I found another discussion on this same topic..." + (show)
@amandajro

Hello @stevemoyt and welcome to Mayo Clinic Connect. I found another discussion on this same topic so you will notice I have moved your post here:
- What helps the symptoms of Small Fiber Neuropathy?: https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/

Members @su8 @dsh33782 and @kenab have joined you to share with you already.

Have you talked to your neurologist about physical therapy as a potential recommendation?

Jump to this post

Try Low Dose Naltrexone (LDN) It really works.
I’ve had SFN in my feet for 14 years and after trying everything imaginable I participated in the webinar with Dr. Kapural, who is the founder of the Chronic Pain Research Institute at Wake Forest University, School of Medicine.
I was very impressed & hopeful that LDN was the answer for the pain in my feet & lower back.
LDN is working after only 3 months and has changed my life in many ways. The pain in my feet is practically gone, as well as the pain in my back and I’m walking longer distances than I have in years.
I am starting to titrate off Lyrica, which I have been on since the beginning of my diagnosis and I look forward to further improvement as the days go on.
It may take up to 8 to 10 weeks for low dose naltrexone to work. It is important to keep taking it until at least then to know if it works for you.
A doctor can prescribe it and it must be compounded by a pharmacist from 50mg’s down to 4.5 milligrams.
It’s worth the effort, for sure!
Learn more here:
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/

REPLY
1 reply
kle | @kle | Jun 5, 2023
In reply to @solobeee1 "Try Low Dose Naltrexone (LDN) It really works. I’ve had SFN in my feet for 14..." + (show)
@solobeee1

Try Low Dose Naltrexone (LDN) It really works.
I’ve had SFN in my feet for 14 years and after trying everything imaginable I participated in the webinar with Dr. Kapural, who is the founder of the Chronic Pain Research Institute at Wake Forest University, School of Medicine.
I was very impressed & hopeful that LDN was the answer for the pain in my feet & lower back.
LDN is working after only 3 months and has changed my life in many ways. The pain in my feet is practically gone, as well as the pain in my back and I’m walking longer distances than I have in years.
I am starting to titrate off Lyrica, which I have been on since the beginning of my diagnosis and I look forward to further improvement as the days go on.
It may take up to 8 to 10 weeks for low dose naltrexone to work. It is important to keep taking it until at least then to know if it works for you.
A doctor can prescribe it and it must be compounded by a pharmacist from 50mg’s down to 4.5 milligrams.
It’s worth the effort, for sure!
Learn more here:
https://www.drugs.com/medical-answers/low-dose-naltrexone-ldn-3570335/

Jump to this post

Hello, Thanks for sharing this. I've also found that low dose naltrexone has helped me a lot with pain over the past few years since I take it, but recently I noticed that it has also caused stomach bloating after I take it with food. This is bothersome to me. Does anyone have this experience with naltrexone? If so, how can this be alleviated? Thanks.

REPLY
solobeee1 | @solobeee1 | Jun 5, 2023

I take before I go to sleep with my other meds & have not experienced bloating but not having the pain is worth the trouble.

REPLY
pah17 | @pah17 | Dec 11, 2023
In reply to @notgivingup17 "I'm sorry to hear what you are going through, I do know and understand your pain...." + (show)
@notgivingup17

I'm sorry to hear what you are going through, I do know and understand your pain. My only suggestion is to see a Muscular skeletal Neurologist and have a skin biopsy done to know for sure if you have small fiber neuropathy.

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I was told by a neurologist that regardless of a positive or negative skin biopsy for small fiber neuropathy, the treatment is the same as peripheral neuropathy - Gapapentin and PT.
I don't have pain, so I suspect the reason the Gapapentin is not easing my symptoms of numbness and tingling is because I'm not in pain. I was evaluated by PT and they will work with me on balance.
I consider myself fortunate so far that while it's distracting and annoying it's not affecting my daily activities and general quality of life at age 71.
May I hear from the pain-free folks on their outlook and regimen?

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