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!

@lisalucier

Hi, @pfbacon – wanted to let you know I moved your post here about low dose naltrexone for neuropathy, as others have talked about it here on this thread on ideas for pain relief from small fiber neuropathy. Hoping others like @terrydclaar @cwallen9 @rwinney @me1229 @katec may have some thoughts for you on this therapy.

Do you know what kind of side effects you might deal with if you do this treatment, pfbacon?

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I have no experience about low dose naltrexone for neuropathy, but am very interested in what others may have to share on this subject. Thanks.

Liked by Lisa Lucier

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@jager5210

Hi John,

Thanks again for your work and sharing on this board. I've gotten in most of the supplements required to start the regimen you said helped you. I also saw my old neurologist Friday and he said he would get me a referral to Mayo. My question to you is whether it's worth it? I can't keep up with all the postings on this board but I do not recall anyone saying that their visit to Mayo really helped them. Please correct me if I'm wrong.

I seriously suspect my neuropathy is related to some long-standing gut issue. I'm wondering if I would be better served trying to get a referral to Dr. Hymen's Functional Medicine Clinic at the Cleveland Clinic?

Recently, all my issues have really flared up. My feet are now both painful and numb to the extent that walking is awkward and painful. I'm concerned about losing mobility. With your numbness in your feet, is your mobility impaired? What is the eventual resolution of SFN? Do you know?

Thanks again,
Barry

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yes I have the same as you mobility is a problem I am heavy equipment operator getting in and out of the equipment is not good I have use a ladder in the past to help.

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@2013pain

I have Idiopathic Small Fiber Neuropathy, Intractable Pain, RLS, chronic pain, along with that depression, anxiety, ADD, etc. I have finally tried Medical Cannabis and I didn't have a very good experience like everyone did. I was expecting, YES! my pain and everything is going to go away. Nope, I had such bad Panic Attacks, anxiety from it. I have tried the vaping, to the creams, to everything. I feel like they have my diagnosis wrong because nothing seems to work at all. They say the CBD oil is to help with anxiety but not for me it didn't. I am telling you, I think my body needs to be studied on, seriously. If I take just the THC it helped a little bit with the pain, but still received the anxiety part and they wouldn't give me anxiety medication to take to cover it up until my body would get used to it. I have never tried Cannabis before. Now they have me on Morphine 15mg once daily, with 2 hydrocodone in the evening, still in pain. The main reason to get on cannabis was to get off as much medication as possible not to add to it.
I have a family to run and they said I need to slow down and I need to pace myself, it's hard when you have two daughters who want to go, go and go. who doesn't understand? I have a home to clean, otherwise, I get even more frustrated and depressed when not cleaned, and get no help. Sorry I had to vent!!!

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@2013pain
I also have sfn, with numbness in my toes to my knees, and burning pain in my feet and ankles. Like you, I'm being treated for clinical depression and anxiety, etc. I find that some of the meds I take for pain are also used to treat depression, so keeping a handle on what each medication is doing can be a bit confusing.

You're surely not alone in the quest for the magic solution. I find peace of mind and heart in knowing that when I die, I will make the move to heaven, where there will be no pain.

Jim

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Jim, are you on the Solutions to Neuropathy Protocol, do you find that it is working for you?
Thanks, Dennis

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Lately, I have taken a couple of tylenol when the pain broke through the anti-seizure meds — much to my surprise, it's working — an hour later I am bustling around, the pain is gone. Peggy

Liked by iceblue

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@2013pain

I have Idiopathic Small Fiber Neuropathy, Intractable Pain, RLS, chronic pain, along with that depression, anxiety, ADD, etc. I have finally tried Medical Cannabis and I didn't have a very good experience like everyone did. I was expecting, YES! my pain and everything is going to go away. Nope, I had such bad Panic Attacks, anxiety from it. I have tried the vaping, to the creams, to everything. I feel like they have my diagnosis wrong because nothing seems to work at all. They say the CBD oil is to help with anxiety but not for me it didn't. I am telling you, I think my body needs to be studied on, seriously. If I take just the THC it helped a little bit with the pain, but still received the anxiety part and they wouldn't give me anxiety medication to take to cover it up until my body would get used to it. I have never tried Cannabis before. Now they have me on Morphine 15mg once daily, with 2 hydrocodone in the evening, still in pain. The main reason to get on cannabis was to get off as much medication as possible not to add to it.
I have a family to run and they said I need to slow down and I need to pace myself, it's hard when you have two daughters who want to go, go and go. who doesn't understand? I have a home to clean, otherwise, I get even more frustrated and depressed when not cleaned, and get no help. Sorry I had to vent!!!

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No worries about venting. I understand.

Liked by Lisa Lucier

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@jimhd

@2013pain
I also have sfn, with numbness in my toes to my knees, and burning pain in my feet and ankles. Like you, I'm being treated for clinical depression and anxiety, etc. I find that some of the meds I take for pain are also used to treat depression, so keeping a handle on what each medication is doing can be a bit confusing.

You're surely not alone in the quest for the magic solution. I find peace of mind and heart in knowing that when I die, I will make the move to heaven, where there will be no pain.

Jim

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Jim, we appreciate you here. I hope you stay a long time. I understand about being weary of struggling with pain constantly. Peggy

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@terrydclaar

Jim, are you on the Solutions to Neuropathy Protocol, do you find that it is working for you?
Thanks, Dennis

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@terrydclaar I don't do the protocol. For one thing, I have only Social Security to live on, so that doesn't allow any extra spending. We eat very nutritionally and take several vitamins and supplements. I think I do all that can be done to stay healthy and alive.

Jim

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@jimhd

@terrydclaar I don't do the protocol. For one thing, I have only Social Security to live on, so that doesn't allow any extra spending. We eat very nutritionally and take several vitamins and supplements. I think I do all that can be done to stay healthy and alive.

Jim

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Thanks Jim. Wishing you the best and a very Merry Christmas.

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@burningfeetinphoenix

@lorirenee1 @hotfooted Hi p @burningfeetinphoenix here. Thanks for the info. I, fortunately, no longer have burning feet…and my neurologist thinks my SFN has gone away. I am grateful but I know that SFN cannot just "go away". I saw the third neurologist in that office last Wednesday for a second punch biopsy and she said I did not need it despite the first Dr. scheduling me for this procedure. He and the second Dr. thought the first biopsy was not done correctly. Now, what had appeared I to be a serious lifelong incurable condition that would only progress, appears to be now an "undiagnosed" condition. The second Dr. told me to go off the 30 mg/day of Cymbalta and the compounded Phenytoin 10% topical cream which I thought were the reason my burning feet went away. I am reluctant to do this as I do not want the burning feet to come back. The burning feet started last April and not only felt like they were on fire but the toes were hot to touch as well. Now my feet feel perfectly normal again…the first biopsy showed virtually zero nerve fibers in the epidermis of my foot and calf as well as no sweat glands. So I am back to square one in terms of a diagnosis and fear that the burning will come back. The Phenytoin 10% I believe has helped, not only with the burning but with the wound healing on my feet which, despite the Dr's telling me was unrelated to the SFN, I disagreed with completely. That has also subsided. When I had the worst burning I used Sarna lotion with menthol and camphor. I also ran a fan or A/C on the feet continuously. It was a nightmare. Oh and BTW the second neurologist said that "you probably had a virus and it is now gone and the nerves have grown back". I am not aware of any virus that causes SFN without other symptoms…and one that just goes away the the nerves grow back in a month's time. Needless to say I am frustrated but for now I am at least not in pain. I am waiting anxiously for the nerve biopsy results due back in six weeks. This time I will get my results directly from the lab and speak to the pathologist directly… Pam

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Are you still experiencing relief from the burning feet, @burningfeetinphoenix? Any further clarity on what was going on with them?

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@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

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@burningfeetinphoenix

@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

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

Jim

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@burningfeetinphoenix

@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

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

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Is Small Fibre Neuropathy and Peripheral Neuropathy same or different?

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@chandyjohn1

Is Small Fibre Neuropathy and Peripheral Neuropathy same or different?

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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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