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!

@johnbishop

Hello @chandyjohn1, Welcome to Connect. I have no medical training or background but I think peripheral neuropathy and small fiber neuropathy have one thing in common – small fiber nerves. I shared a 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 in an earlier post in this discussion. Here is a link to the post with the video: https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/?pg=8#comment-332835

Have you been diagnosed with small fiber neuropathy or peripheral neuropathy?

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@johnbishop Would you say that sfpn is a form of pn?

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@jimhd

@johnbishop Would you say that sfpn is a form of pn?

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Hi Jim @jimhd, I had always thought of small fiber peripheral neuropathy (SFPN) is the same as peripheral neuropathy (PN}. But it can actually be either small or large fiber nerves.
https://neuropathycommons.org/neuropathy/neuropathy-overview

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@johnbishop

Hi Jim @jimhd, I had always thought of small fiber peripheral neuropathy (SFPN) is the same as peripheral neuropathy (PN}. But it can actually be either small or large fiber nerves.
https://neuropathycommons.org/neuropathy/neuropathy-overview

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That is an excellent link!

Since being diagnosed (only a few months ago!) I've thought of PN as being the overarching term for the disease, with the various types of PN falling underneath.

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@iceblue

That is an excellent link!

Since being diagnosed (only a few months ago!) I've thought of PN as being the overarching term for the disease, with the various types of PN falling underneath.

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I thought SFP was "Small Fiber Polyneuropathy"…a special form of SFN which progresses in a socking and glove fashion from usually the feet upward…I just had a second skin biopsy for this condition…Pam @burningfeetinphoenix

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@burningfeetinphoenix

I thought SFP was "Small Fiber Polyneuropathy"…a special form of SFN which progresses in a socking and glove fashion from usually the feet upward…I just had a second skin biopsy for this condition…Pam @burningfeetinphoenix

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@burningfeetinphoenix If you don’t mind me asking, did you get your results back from your second biopsy?

Liked by Lisa Lucier

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@katec

@burningfeetinphoenix If you don’t mind me asking, did you get your results back from your second biopsy?

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@katec Results of second biopsy showed I did not have SFPN! What a surprise. After my podiatrist indicated my biopsy said I has essentially no small fiber nerves left in my epidermis. He wanted to give me stem cell injections for $2,500.00 each and no insurance coverage…something's wrong here…all ENFD results were negative for SFN. Pam

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@burningfeetinphoenix

@katec Results of second biopsy showed I did not have SFPN! What a surprise. After my podiatrist indicated my biopsy said I has essentially no small fiber nerves left in my epidermis. He wanted to give me stem cell injections for $2,500.00 each and no insurance coverage…something's wrong here…all ENFD results were negative for SFN. Pam

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Wow, that’s amazing news!! I’m so happy for you and hopeful for the rest of us!! Does your dr think it has anything to do with the meds you were on? Have you only ever been on the phenytoin?

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@katec I've been on the Phenytoin cream and 30 mg Cymbalta for several months. I am reluctant to stop. See Dr Levine in Feb. Will decide then what to do. The burning feet this summer was excrusiating. I lost three months of my life. Not sure what to think…Pam

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@burningfeetinphoenix

I thought SFP was "Small Fiber Polyneuropathy"…a special form of SFN which progresses in a socking and glove fashion from usually the feet upward…I just had a second skin biopsy for this condition…Pam @burningfeetinphoenix

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@burningfeetinphoenix – we may need a doctor to chime in and provide clarification on the medical terminology and differences (@jeffrapp?), but when I look up polyneuropathy – it pretty much describes my situation and I was diagnosed with Small Fibre Neuropathy. In fact, I told my doctor that I always experienced pain on both sides of my body at the same time – which seemed bizarre to me. I NEVER felt pain in only one foot or one calf – the pain was always 'mirrored'…
https://en.wikipedia.org/wiki/Polyneuropathy

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My diagnosis is Axonal Sensory Neuropathy (unknown cause). I also experience pain and burning on both sides, sometimes it feels like a little more on one side than the other. Peggy

Liked by iceblue

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@burningfeetinphoenix

@katec Results of second biopsy showed I did not have SFPN! What a surprise. After my podiatrist indicated my biopsy said I has essentially no small fiber nerves left in my epidermis. He wanted to give me stem cell injections for $2,500.00 each and no insurance coverage…something's wrong here…all ENFD results were negative for SFN. Pam

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👍🏼

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@burningfeetinphoenix

@katec I've been on the Phenytoin cream and 30 mg Cymbalta for several months. I am reluctant to stop. See Dr Levine in Feb. Will decide then what to do. The burning feet this summer was excrusiating. I lost three months of my life. Not sure what to think…Pam

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@burningfeetinphoenix

Are you getting the same diagnosis and treatment from more than one doctor? If I were in your position I would be asking my doctor to recommend a specialist to give a second or third opinion. That's something my own doctor is happy to do.

I just read an article about this very subject, and the writer said that doctors are asked to refer the patient regularly and should have no problem with it. If you can access the AARP magazine that just came out, it's "The Art of Getting a Good Second Opinion", by Kimberly Rae Miller. It's a great article.

Jim

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@iceblue

@burningfeetinphoenix – we may need a doctor to chime in and provide clarification on the medical terminology and differences (@jeffrapp?), but when I look up polyneuropathy – it pretty much describes my situation and I was diagnosed with Small Fibre Neuropathy. In fact, I told my doctor that I always experienced pain on both sides of my body at the same time – which seemed bizarre to me. I NEVER felt pain in only one foot or one calf – the pain was always 'mirrored'…
https://en.wikipedia.org/wiki/Polyneuropathy

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@iceblue, I'll give it a try. This is a very complex and confusing subject.
The terms polyneuropathy, peripheral neuropathy, and neuropathy are often used interchangeably, but there is a difference. Polyneuropathy is more specific, and refers to a set of diseases characterized by multiple, often symmetrical nerve involvement. Peripheral neuropathy is more general, and can involve only one nerve, such as trigeminal neuralgia. Neuropathy is more general still, and can even mean involvement of the central nervous system.
Small fiber peripheral neuropathy is a form of polyneuropathy which refers specifically to the small fibers in the skin. This is the condition usually diagnosed with an epidermal nerve fiber density test (EFND), the "skin biopsy" often referred to here.
@burningfeetinphoenix, I don't quite understand your post about the podiatrist. If your skin biopsy was positive, then you do have small fiber peripheral neuropathy (SFPN). One way or another, I'd be careful about dealing with this podiatrist, as there is no evidence as yet that stem cells have a roll in treating any neuropathy.

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@burningfeetinphoenix I second what @jeffrapp said about being careful with the podiatrist for the same reason – I have not read about any evidence or clinical trials for treating neuropathy other than one for treating diabetic neuropathy and I think the jury may still be out on the treatment.

Mesenchymal stem cells to treat diabetic neuropathy: a long and strenuous way from bench to the clinic
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4979500/

Here are a couple of sites with negative implications for stem cell treatment for neuropathy.

Canada case highlights possible long-term risks of experimental stem cell therapy
https://www.statnews.com/2019/07/11/canada-case-long-term-risks-experimental-stem-cell-therapy/

FDA Warns About Stem Cell Therapies
https://www.fda.gov/consumers/consumer-updates/fda-warns-about-stem-cell-therapies

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@johnbishop

@burningfeetinphoenix I second what @jeffrapp said about being careful with the podiatrist for the same reason – I have not read about any evidence or clinical trials for treating neuropathy other than one for treating diabetic neuropathy and I think the jury may still be out on the treatment.

Mesenchymal stem cells to treat diabetic neuropathy: a long and strenuous way from bench to the clinic
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4979500/

Here are a couple of sites with negative implications for stem cell treatment for neuropathy.

Canada case highlights possible long-term risks of experimental stem cell therapy
https://www.statnews.com/2019/07/11/canada-case-long-term-risks-experimental-stem-cell-therapy/

FDA Warns About Stem Cell Therapies
https://www.fda.gov/consumers/consumer-updates/fda-warns-about-stem-cell-therapies

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My pain management doctor texted me the following when I asked about regenerative medicine:
There's better stuff, stem cells are not very viable when you put them from one place to another. Look up exosomes.

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