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!

@nukhan

It will be of great help if members could update on the use of ReBuilder and whether insurance covers it

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I had three treatments in physical therapy (days apart) on my feet and hands. It seemed to help, so I bought a unit. Since then I have tried it once or twice a day for about ten days. So far, it hasn't seemed to help. In fact, it may be making it worse. I am going off of it for a few days to see if I notice a difference. I submitted the cost to my insurance, so I will see soon if they will pay for it. I couldn't get an answer from my insurance company when I called them. I will keep everyone updated.

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@me1229

Just found this page of discussion threads. I was diagnosed with SFN 2 years ago. I am on 2,400 mg of Gabapentin a day plus 50 mg of Elavil at bed time. The pain is still there at night especially. Anyone out there taking more gabapentin and feeling relief? I’ve tried Cymbalta and Elavil also and could not handle the side effect of EXTREME dry mouth. Anyone with some suggestions?

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me1229

Bioteen mouthwash at bedtime helps with my dry mouth, and I have a spray bottle of it along with Bioteen lozenges. If my dry mouth wakes me up I use one of those. I keep them on my nightstand.

Jim

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@pfbacon

Are any of you taking Low Dose Naltrexone for neuropathy? I just found it mentioned on the Chronic Pain forum and followed the link – the information said that it can be useful to treat neuropathy and many doctors don't know about it yet. I will ask my pain doctor the next time I see him. Peggy

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Hi @pfbacon have you done any further research on naltrexone to treat neuropathy? What have you found?

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@pfbacon

Are any of you taking Low Dose Naltrexone for neuropathy? I just found it mentioned on the Chronic Pain forum and followed the link – the information said that it can be useful to treat neuropathy and many doctors don't know about it yet. I will ask my pain doctor the next time I see him. Peggy

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I didn't know it existed until yesterday. I'll post whatever I find out from pain specialist doctor – I'll call for appointment tomorrow (Monday). Peggy

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Are any of you taking Low Dose Naltrexone for neuropathy? I just found it mentioned on the Chronic Pain forum and followed the link – the information said that it can be useful to treat neuropathy and many doctors don't know about it yet. I will ask my pain doctor the next time I see him. Peggy

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@pfbacon

Are any of you taking Low Dose Naltrexone for neuropathy? I just found it mentioned on the Chronic Pain forum and followed the link – the information said that it can be useful to treat neuropathy and many doctors don't know about it yet. I will ask my pain doctor the next time I see him. Peggy

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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 an appointment with my pain specialist doctor on Dec 6th. I will ask him about naltrexone and the side effects. I'll report it here. Peggy

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@burningfeetinphoenix

@burningfeetinphoenix …I am pretty new to this so I hope I am successful in starting a discussion. I have been researching other alternatives to conventional drugs and was looking for comments on these treatments that seem to have support from the medical community and have had some clinical trials albeit not necessarily double blind studies. Here they are:

Phenytoin Cream
DMSO cream
PEA capsules 600-1200 mg as per studies
PEA Cream – Can now purchase in the US!
Injections of Exosomes (my podiatrist wants to do these injections)
Calmare machine
Ketamine and Amitriptyline NP-H cream

Any comments welcome. Also, it appears most studies on alternatives are done in the Netherlands.

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burningfeetinphoenix… Your name says so much about your poor hot feet! I identify with you since I call myself Hotfooted… Erythromelalgia has been a bugaboo for my feet for several years, then along came neuropathy to increase my discomfort… Shucks! I will mention what has helped me the most, although it doesn't make a difference for many people.. I use a rubbing oil that I purchase from Amazon called Frankincense and Myrrh NEUROPATHY… It calms the burning hotness in my feet and eases the crazy tingling of neuropathy for me.. Maybe it will help you… I hope so… Stay off your feet as much as possible and keep them elevated.. And pedaling a stationary bicycle some every day is the only exercise I can do… I can walk around in my house now, but couldn't for about a year because of the pain in my feet.. Blessings on you…

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@hotfooted

burningfeetinphoenix… Your name says so much about your poor hot feet! I identify with you since I call myself Hotfooted… Erythromelalgia has been a bugaboo for my feet for several years, then along came neuropathy to increase my discomfort… Shucks! I will mention what has helped me the most, although it doesn't make a difference for many people.. I use a rubbing oil that I purchase from Amazon called Frankincense and Myrrh NEUROPATHY… It calms the burning hotness in my feet and eases the crazy tingling of neuropathy for me.. Maybe it will help you… I hope so… Stay off your feet as much as possible and keep them elevated.. And pedaling a stationary bicycle some every day is the only exercise I can do… I can walk around in my house now, but couldn't for about a year because of the pain in my feet.. Blessings on you…

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@hotfooted @burningfeetinphoenix Hi ladies, there is another Frankincense and Myrr on Amazon that also works very well with foot burning. I use the Frankincense and Myrr Neuropathy that hotfooted wrote about, but I also bought "Wisemen Healing balm, 100% Frankincense and Myrr." For me, this one works even better. It does not seem to help with other symptoms of foot neuropathy, but is excellent when my feet feel like they are on fire. Just thought I would share. This product is also on Amazon, and not expensive. If I remember, it was about fifteen bucks. Take care… Lori Renee

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@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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@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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@burningfeetinphoenix You can also order a punch biopsy kit from Dr Oaklander’s office/lab and have a dermatologist do the biopsy and then have it sent directly to Dr Oaklander’s lab at Mass General Hospital. I think all the information is on the neuropathycommons.org website. This is the method we used to diagnose my son’s SFN. It does not mean they’ll take you on as a patient, but you may feel better about the accuracy of the results? Just a thought

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@katec

@burningfeetinphoenix You can also order a punch biopsy kit from Dr Oaklander’s office/lab and have a dermatologist do the biopsy and then have it sent directly to Dr Oaklander’s lab at Mass General Hospital. I think all the information is on the neuropathycommons.org website. This is the method we used to diagnose my son’s SFN. It does not mean they’ll take you on as a patient, but you may feel better about the accuracy of the results? Just a thought

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@burningfeetinphoenix Also, that’s awesome that you aren’t feeling symptoms anymore!! You are so lucky!!

Liked by rwinney

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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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@burningfeetinphoenix Hi Pam, My goodness, I am so happy you are not burning any more. That is pretty crazy. Enjoy every moment that you are not on fire. I think, maybe, you should continue with the cream. You know yourself better than the doc knows you. Good luck with the biopsy. Keep on not hurting!!! Oh my goodness! Lori Renee

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@burningfeetinphoenix, I have been wondering where you were…missed seeing that long alias. You know, a misdiagnosis may just be in your favor. It is pretty obvious to me that nerves, while capable of regenerating, take forever to do so…much longer than most of us have to wait. I am anxious to learn. Enjoy the freedom from pain. Don't overdo it with the dancing. Be happy and healthy, Chris

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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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