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

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

This definitely works , additionally I cut out alcohol and gluten

REPLY

I’ve been dealing with this for almost a year now, started with a burning & desensitized feeling on my inner ankle then I have the same thing on the back of shoulder & most recently patches on my upper thigh & inner knee/ calf in the opposite leg, yesterday I started to feel like it was starting on the tip of my tounge !! I’ve heard it can be an after effect of having Covid but there is so little info out there. (I’ve had all labs for any other causes done & I’m super healthy otherwise) How far will this go? I don’t know where to turn as I am currently just treating the symptoms with gabapentin.

REPLY
@hansong7

I’ve been dealing with this for almost a year now, started with a burning & desensitized feeling on my inner ankle then I have the same thing on the back of shoulder & most recently patches on my upper thigh & inner knee/ calf in the opposite leg, yesterday I started to feel like it was starting on the tip of my tounge !! I’ve heard it can be an after effect of having Covid but there is so little info out there. (I’ve had all labs for any other causes done & I’m super healthy otherwise) How far will this go? I don’t know where to turn as I am currently just treating the symptoms with gabapentin.

Jump to this post

Welcome, Hansong. Indeed, people with long haul COVID have reported neuropathy and other neurological side effects as a lingering side effect of COVID infection. Researchers continue to study these after effects and potential solutions. You may wish to follow the Mayo expert blog to learn about the latest research as it becomes available.
- Post-COVID Recovery blog https://connect.mayoclinic.org/blog/post-covid-recovery/

But first I want to connect you with other people dealing with small fiber neuropathy, like @chloeb2 @athenalee @ashleyy302 @kenc @davehayward1 @ubelinda @notgivingup17 @artscaping @erice10 @margie1234 @pacer3702 @retired123 @twobrooklyn @simina1234 and others who are looking for solutions, like you. That's why I moved your message to this existing discussion:

- What helps the symptoms of Small Fiber Neuropathy? https://connect.mayoclinic.org/discussion/tingling-from-small-fiber-neurapathy/

Hansong, are you in the care of a neurologist? Have you been to a post-COVID clinic?

REPLY
@hansong7

I’ve been dealing with this for almost a year now, started with a burning & desensitized feeling on my inner ankle then I have the same thing on the back of shoulder & most recently patches on my upper thigh & inner knee/ calf in the opposite leg, yesterday I started to feel like it was starting on the tip of my tounge !! I’ve heard it can be an after effect of having Covid but there is so little info out there. (I’ve had all labs for any other causes done & I’m super healthy otherwise) How far will this go? I don’t know where to turn as I am currently just treating the symptoms with gabapentin.

Jump to this post

Hello @hansong7, I would like to add my welcome to @colleenyoung and others. Fortunately for me I haven't had COVID yet but I do have small fiber peripheral neuropathy with only numbness and some minor tingling in the feet. Mine was diagnosed by a neurologist exam along with a few of the nerve conduction tests. I'm not sure anyone can answer your question of how far will it go. Each of us are different and in some cases if they can determine the cause and there is a good treatment they can normally provide relief for the symptoms. I don't believe there is any cure for neuropathy unless it's caused by a compressed or damaged nerve and it can be fixed with surgery - but that's just my non medical opinion from all the reading I have done.

One thing that has helped me is to learn as much as I can about my condition. There are two really good sites for learning about neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

There is also another discussion where myself and others with neuropathy have shared our story and what has helped us -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

Did your doctor diagnose or think your neuropathy was caused by COVID, or have you been diagnosed by a neurologist?

REPLY
@johnbishop

Hello @hansong7, I would like to add my welcome to @colleenyoung and others. Fortunately for me I haven't had COVID yet but I do have small fiber peripheral neuropathy with only numbness and some minor tingling in the feet. Mine was diagnosed by a neurologist exam along with a few of the nerve conduction tests. I'm not sure anyone can answer your question of how far will it go. Each of us are different and in some cases if they can determine the cause and there is a good treatment they can normally provide relief for the symptoms. I don't believe there is any cure for neuropathy unless it's caused by a compressed or damaged nerve and it can be fixed with surgery - but that's just my non medical opinion from all the reading I have done.

One thing that has helped me is to learn as much as I can about my condition. There are two really good sites for learning about neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

There is also another discussion where myself and others with neuropathy have shared our story and what has helped us -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

Did your doctor diagnose or think your neuropathy was caused by COVID, or have you been diagnosed by a neurologist?

Jump to this post

I was diagnosed with small fiber after a skin sample was sent to the lab. I had already tested negative for large fiber.

REPLY
@virginiashort

I was diagnosed with small fiber after a skin sample was sent to the lab. I had already tested negative for large fiber.

Jump to this post

Can you share a little about your symptoms from small fiber neuropathy and any treatments you have tried?

REPLY
@hansong7

I’ve been dealing with this for almost a year now, started with a burning & desensitized feeling on my inner ankle then I have the same thing on the back of shoulder & most recently patches on my upper thigh & inner knee/ calf in the opposite leg, yesterday I started to feel like it was starting on the tip of my tounge !! I’ve heard it can be an after effect of having Covid but there is so little info out there. (I’ve had all labs for any other causes done & I’m super healthy otherwise) How far will this go? I don’t know where to turn as I am currently just treating the symptoms with gabapentin.

Jump to this post

Good afternoon @hansong7. Colleen, thanks for the introduction. You have had a year of symptoms that appear to be SFN, small fiber neuropathy. I don't know if my symptoms include such defined patches of burning and desensitized feeling. I did have the skin biopsy which came back with 0.09 % fulfillment which is severe enough to be somewhat frightening to me. At that point, I also was on gabapentin.

My suffering begins with and is related to the daily barometric pressure. The lower the pressure the more my body feels "pain heavy". About five years ago I begin experimenting with medical cannabis. Except for the gabapentin, I use different doses of medical cannabis including topicals for the tingles and tinctures for the heaviness and pain.

I am here for you to help with identifying medication and other types of treatment. MFR, myofascial release therapy is a must for me twice a week. That enables me to keep driving, participate in Yoga and practice mindfulness.

May you be free, safe, and protected from inner and outer harm.
Chris

REPLY
@johnbishop

Hello @hansong7, I would like to add my welcome to @colleenyoung and others. Fortunately for me I haven't had COVID yet but I do have small fiber peripheral neuropathy with only numbness and some minor tingling in the feet. Mine was diagnosed by a neurologist exam along with a few of the nerve conduction tests. I'm not sure anyone can answer your question of how far will it go. Each of us are different and in some cases if they can determine the cause and there is a good treatment they can normally provide relief for the symptoms. I don't believe there is any cure for neuropathy unless it's caused by a compressed or damaged nerve and it can be fixed with surgery - but that's just my non medical opinion from all the reading I have done.

One thing that has helped me is to learn as much as I can about my condition. There are two really good sites for learning about neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
-- The Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/treatments/

There is also another discussion where myself and others with neuropathy have shared our story and what has helped us -- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/

Did your doctor diagnose or think your neuropathy was caused by COVID, or have you been diagnosed by a neurologist?

Jump to this post

I'm not sure how bright your neurologist is, small fiber and peripheral neuropathy are different diseases. Small fiber neuropathy is diagnosed by a skin biopsy. I have read of several patients and neurologists with the same confusion, the latter diagnosing sfn with a eeg.

REPLY
@jwalker12

I'm not sure how bright your neurologist is, small fiber and peripheral neuropathy are different diseases. Small fiber neuropathy is diagnosed by a skin biopsy. I have read of several patients and neurologists with the same confusion, the latter diagnosing sfn with a eeg.

Jump to this post

Yes, mine was diagnosed with a skin biopsy

REPLY
@jwalker12

I'm not sure how bright your neurologist is, small fiber and peripheral neuropathy are different diseases. Small fiber neuropathy is diagnosed by a skin biopsy. I have read of several patients and neurologists with the same confusion, the latter diagnosing sfn with a eeg.

Jump to this post

Just an FYI...."Is small fiber neuropathy the same as peripheral neuropathy? -- Small fiber neuropathy is considered a form of peripheral neuropathy because it affects the peripheral nervous system, which connects the brain and spinal cord to muscles and to cells that detect sensations such as touch, smell, and pain." --
Small fiber neuropathy: MedlinePlus Genetics: https://medlineplus.gov/genetics/condition/small-fiber-neuropathy/

You are correct, the skin punch biopsy is the gold standard for diagnosing small fiber neuropathy but sometimes it takes a village approach. My neurologist could have done a punch biopsy but I'm quite happy with the diagnosis. May not be a big deal but if I have nerve damage why would I want to have a punch biopys which by definition is going to remove some good nerves along with some damaged ones to see how bad it is. Just my thoughts.

REPLY
Please sign in or register to post a reply.