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Ideas for pain relief from Small Fiber Neuropathy (SFN)

Neuropathy | Last Active: Apr 26 7:21pm | Replies (449)

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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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Replies to "@lorirenee1 @hotfooted Hi p @burningfeetinphoenix here. Thanks for the info. I, fortunately, no longer have burning..."

@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

@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

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