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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!

rwinney | @rwinney | Sep 26, 2019
In reply to @burningfeetinphoenix "@burrningfeet in Phoenix here...My understanding is small fiber neuropathy (SFN) is a specific kind of peripheral..." + (show)
@burningfeetinphoenix

@burrningfeet in Phoenix here…My understanding is small fiber neuropathy (SFN) is a specific kind of peripheral neuropathy and it too has specific kinds of forms but generally affects the small nerve fibers in the body. Peripheral neuropathy is a more general form of neuropathy affecting the nervous system of the body and and can include large and small nerve fibers Most cases begin in the feet and progress upwards but not always. Sometimes these nerve fibers are not even lost but can be damaged or injured say due to an accident or even non-functional… but there is pain but sometimes numbness or other symptoms. PN includes such things like Tarsal Tunnel Syndrome or nerve entrapment, nerve injury etc. Can include almost anything except nerves affecting the spine and brain. The scientific literature is not always clear on this as I have seen SFPN used as an acronym for Small Fiber Peripheral Neuropathy and Small Fiber Polyneuropathy…not to be confused with SFMN which affects one particular peripheral area of the body…There is an article Todd Levine that breaks SFN down into very specific types. I'll look through my files and see if I can find it. I welcome any other clarification as I am new to this…Pam

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Straight out of the text book!

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1 reply
rwinney | @rwinney | Sep 26, 2019
In reply to @rwinney "Straight out of the text book!" + (show)
@rwinney

Straight out of the text book!

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Hah! Thank you John for the video, I watched it back when I first joined connect. Great tool. Unfortunately, my retention ability is quite limited so I know the answers but reciting is another thing!

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Lisa Lucier | @lisalucier | Oct 2, 2019
In reply to @terryrose "My diagnosis is peripheral neuropathy. I have numb feet and numbness on one leg up to..." + (show)
@terryrose

My diagnosis is peripheral neuropathy. I have numb feet and numbness on one leg up to the knee. But at the same time the feet are so sensitive that I can't wear socks, even though the compression socks might work. Reason is that one small wrinkle feels like I'm on a rock or nail, etc.
Hoping some cure can be found.

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Hi, @terryrose – since you can't wear socks or you get the feeling of a rock or nail with one wrinkle, what do you usually wear on your feet?

You may also be interested in this discussion specifically on footwear and neuropathy https://connect.mayoclinic.org/discussion/does-anyone-find-that-a-brand-of-shoes-helps-your-foot-neuropathy/

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kansasgal | @kansasgal | Oct 12, 2019
In reply to @colleenyoung "@burningfeetinphoenix I see that you wanted to share link to information to share with fellow members...." + (show)
@colleenyoung

@burningfeetinphoenix I see that you wanted to share link to information to share with fellow members. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.

Case Report – Topical Phenytoin Cream in Small Fiber Neuropathic Pain: Fast Onset of Perceptible Pain Relief by Jan M Keppel Hesselink and David J Kopsky (2017) https://www.scireslit.com/Pain/IJPR-ID13.pdf

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Thank you for the link. I am so tired of all the pain in my feet. After reading the study I called my neurologist and asked if they could call in a script for this. They agreed and I can't wait to try it! It is pricey from the compounding pharmacy, $60 for 60 grams. I'll be sure to let everyone know how it works.

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burningfeetinphoenix | @burningfeetinphoenix | Oct 12, 2019

@kansasgal…is this Phenytoin 10 percent? I am having 60 grams compounded. Taking a while as they are waiting for some ingredients. Dr Kopsky in the Netherlands recommend it to me. Has done studies on it for SFN. Pam

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1 reply
kansasgal | @kansasgal | Oct 13, 2019
In reply to @burningfeetinphoenix "@kansasgal...is this Phenytoin 10 percent? I am having 60 grams compounded. Taking a while as they..." + (show)
@burningfeetinphoenix

@kansasgal…is this Phenytoin 10 percent? I am having 60 grams compounded. Taking a while as they are waiting for some ingredients. Dr Kopsky in the Netherlands recommend it to me. Has done studies on it for SFN. Pam

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My dr. called in 5% phenytoin cream. Compounding pharmacy has not called yet to let me know it's ready.

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burningfeetinphoenix | @burningfeetinphoenix | Oct 13, 2019

@kansasgal Good. LMK how it works for me. I told Dr. Kopsky I would report back to him on my results. Have you red his studies on this Phenytoin topical? My Pharmacist said it has to be used within 30 days as the medicine will lose its compounded after that time period. At least that is true for the 10% topical. I am hopeful this will work for my feet! Pam

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2 replies
iceblue | @iceblue | Oct 13, 2019
In reply to @burningfeetinphoenix "@kansasgal Good. LMK how it works for me. I told Dr. Kopsky I would report back..." + (show)
@burningfeetinphoenix

@kansasgal Good. LMK how it works for me. I told Dr. Kopsky I would report back to him on my results. Have you red his studies on this Phenytoin topical? My Pharmacist said it has to be used within 30 days as the medicine will lose its compounded after that time period. At least that is true for the 10% topical. I am hopeful this will work for my feet! Pam

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How interesting that an anti-seizure medication can be compouned into a cream and used as a topical to relieve nerve pain. I am VERY interested in hearing the results of your experience.

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1 reply
burningfeetinphoenix | @burningfeetinphoenix | Oct 13, 2019

@iceblue Here is the study you can google
2018 Jun; 11(2): 53.
Published online 2018 May 28. doi: 10.3390/ph11020053
PMCID: PMC6027409
PMID: 29843362
Phenytoin Cream for the Treatment of Neuropathic Pain: Case Series
David J. Kopsky1,* and Jan M. Keppel Hesselink2

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1 reply
iceblue | @iceblue | Oct 13, 2019
In reply to @burningfeetinphoenix "@iceblue Here is the study you can google 2018 Jun; 11(2): 53. Published online 2018 May..." + (show)
@burningfeetinphoenix

@iceblue Here is the study you can google
2018 Jun; 11(2): 53.
Published online 2018 May 28. doi: 10.3390/ph11020053
PMCID: PMC6027409
PMID: 29843362
Phenytoin Cream for the Treatment of Neuropathic Pain: Case Series
David J. Kopsky1,* and Jan M. Keppel Hesselink2

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Wow!!! I wonder why this isn't big news in the medical world!!!

I wonder what the drawbacks are….

My feet are the biggest problem, but the disease (? is it a disease?) is definitely moving up my legs; my calves are involved as well. So – if one was to put it on increasingly larger areas, I wonder if there would be a danger of over dose?

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burningfeetinphoenix | @burningfeetinphoenix | Oct 13, 2019

@iceblue I saw the Neurologist yesterday and he would not even let me tell him about it because it was not a "drug", even though my PCP prescribed it and Dr.Kopsky, a pain Dr., recommended it! I have the same problem as you do. My feet are the main problem but my lower legs are tingling and a bit numb. My hands tingle sometimes at night. There is no pain there so I am going to focus on the feet. According to the average amount of topical applied to patients in the study, the 60 gm should last 30 days for two applications per/day. This will vary with the amount of coverage…Pam

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1 reply
iceblue | @iceblue | Oct 13, 2019
In reply to @burningfeetinphoenix "@iceblue I saw the Neurologist yesterday and he would not even let me tell him about..." + (show)
@burningfeetinphoenix

@iceblue I saw the Neurologist yesterday and he would not even let me tell him about it because it was not a "drug", even though my PCP prescribed it and Dr.Kopsky, a pain Dr., recommended it! I have the same problem as you do. My feet are the main problem but my lower legs are tingling and a bit numb. My hands tingle sometimes at night. There is no pain there so I am going to focus on the feet. According to the average amount of topical applied to patients in the study, the 60 gm should last 30 days for two applications per/day. This will vary with the amount of coverage…Pam

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Thanks Pam. Yes – our SFN experiences are almost identical. I have a lot of tingling in my hands at night, but assumed it was related to (diagnosed) arthritis in my neck, but come to think of it, I haven't felt it for….. I've lost track of exactly when, but it has definitely stopped since I started taking the Gabapentin! Interesting! Will have to watch for this.

BTW – day 3 of 300 mg at night, and another day of pain free feet 😀

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