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!

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

burningfeetinphoenix | @burningfeetinphoenix | Dec 13, 2019

@lisalucier - @burningfeetinphoenix here. Hi Lisa. Thanks for your inquiry. Well, the burning feet miracuously went away! I am still on the 30 mg of Cymbalta and using the compounded Phenytoin 10% topical. I have seen Dr. Levine and he thinks the SFN "went away and the nerves grew back". However, I decided to go through with a 2nd punch biopsy as the previous neurologist I saw recommended this as the first biopsy was done at a non-certified lab. Dr. Levine suggested I try going off the meds to see if the SFN has indeed gone away. I am still skeptical as I found no reports of SFN just going away. However, Dr. Todd Levine is a an expert on SFN and has written a book on it as well as many scholarly articles. He has never indicated in any of those papers that SFN can go away unless the cause is found and treated. Normally it progresses over time...The results of the second biopsy will be ready this coming Monday, 12/16. I am waiting anxiously for those results, For now I can wear socks and my hiking and running shoes. I can sleep with socks on under the covers! I am back to trail running and hiking...I sure hope this lasts. Thanks for asking. Pam

Jim, Volunteer Mentor | @jimhd | Dec 13, 2019

In reply to @burningfeetinphoenix "@lisalucier - @burningfeetinphoenix here. Hi Lisa. Thanks for your inquiry. Well, the burning feet miracuously went..." + (show)

That's excellent! Isn't waiting for test results fun?

Jim

Lisa Lucier | @lisalucier | Dec 18, 2019

In reply to @burningfeetinphoenix "@lisalucier - @burningfeetinphoenix here. Hi Lisa. Thanks for your inquiry. Well, the burning feet miracuously went..." + (show)

What did you find out from the 2nd biopsy, @burningfeetinphoenix ?

Chandy John | @chandyjohn1 | Dec 22, 2019

Is Small Fibre Neuropathy and Peripheral Neuropathy same or different?

John, Volunteer Mentor | @johnbishop | Dec 22, 2019

In reply to @chandyjohn1 "Is Small Fibre Neuropathy and Peripheral Neuropathy same or different?" + (show)

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?

Jim, Volunteer Mentor | @jimhd | Dec 22, 2019

In reply to @johnbishop "Hello @chandyjohn1, Welcome to Connect. I have no medical training or background but I think peripheral..." + (show)

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

John, Volunteer Mentor | @johnbishop | Dec 22, 2019

In reply to @jimhd "@johnbishop Would you say that sfpn is a form of pn?" + (show)

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

iceblue | @iceblue | Dec 22, 2019

In reply to @johnbishop "Hi Jim @jimhd, I had always thought of small fiber peripheral neuropathy (SFPN) is the same..." + (show)

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.

burningfeetinphoenix | @burningfeetinphoenix | Dec 22, 2019

In reply to @iceblue "That is an excellent link! Since being diagnosed (only a few months ago!) I've thought of..." + (show)

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