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Small fiber neuropathy

Mar 21, 2019 1:48 AM

For those with a diagnosis of SFN, support and sharing of knowledge, treatments and news

Mar 21, 2019 1:54 AM

Hello! I have been suffering from pain for years and no one could give me a difinitive diagnosis until I started tracking it on this app and my dr noticed I seemed to have a lot of burning and sharp pains. She took a biopsy of my leg skin and now I have an answer! We don’t know why I’ve developed SFN but there is so little info out there! It’s a extremely painful condition since the small fibers send burn and pain signals. Hoping to meet others who can understand.

Mar 21, 2019 8:53 PM

Apologies don’t have sfn but suffer from severe neuropathic pain.

Welcome to the group

Mar 22, 2019 11:05 AM

Welcome to the group. I have SFN but I haven't heard of anything that helps. Sorry.

Mar 22, 2019 8:54 PM

Hello ouchiepps, I thought I had replied the otber day but i must not have clicked post. I have SFN as well. Its horrible and I'm so sorry to hear of you or anyone else that may. Honestly, I am thrilled you found a dr to test you. Its not easy because most drs just couldn't explain the throbbing, fiery, intense pain I had been experiencing. Its much worse for me than my RA or fibromyalga pain. Much different. I had to go to a neuromuscular specialist at Barnes hospital in St. Louis to finally get answers. We drove 4 hrs to get there. By the time my husband had checked us into the hotel room, I was in such a shape he practically had to carry me. Nothing touched the pain. Not even fentenal. By morning, he ran my bath (which is something I never do in a hotel, but I couldnt stand) he bathed me and dressed me. Then got a wheel chair to get me to the car. We also used a wheelchair at the medical center. My dr ran several tests, including the 3 biopsies on my leg like you had. Then, 2 days later Dr. G called me to tell me that my small fiber nerves were dying. My diagnosis, Small Fiber Neuropathy. I asked if it would get better, but she informed me it would only get worse. All we could do is treat the symptoms. We tried several different things. Right now, after trials of different meds to add to all the other mess I take, I'm on amantadine 2 times daily. I take so much medicine. I hate it, but I really haven't a choice because I do not to go through pain that intense ever again if I can help it. I do have to use compound creams and patches still but I am so much better than I was concerning the SFN. I hope this helps you some. Prayers going up for you to be able to find the right doctor and treatment.

Mar 25, 2019 11:37 AM

After reading Sleeping beauty's post I am truly sorry to hear what y'all have to go through! I have fibro & spinal caused neuropathies, but at least my gabapentin makes it tolerable. Except that I have developed extremely sensitive upper arms, where if I am touched by even a finger it causes sharp intense tingling pain. I'm guessing it's coming from my cervical disc issues. But I'm afraid to mention it to the doctor because like Sleepingbeauty, I'm already on a whole lot of meds. Hugs love & prayers the doctors & pharmaceuticals will find treatment for all of us! πŸ™‚β€πŸ™πŸŒΌ

Mar 29, 2019 9:06 PM

Thank you Flappys lady. I actually should have correctly said, Small Fiber Periphial Neuopathy or SFPN. I honestly haven't talked to anyone about in quite some time until now because its difficult to explain and most people around me, including some of my family just don't understand...but you all do. πŸ˜™ But Girl, I must tell you that all of us here have pain we're dealing with. I don't consider mine any differant than anyone else on here. Your pain is just as awful for you as mine is for me.

Mar 30, 2019 9:36 AM

You are so right! Our symptoms may differ but we all do understand what trying to live with chronic pain is like. I've been halfway joking lately saying "I don't know who called them the 'Golden Years', but they lied!". Lol πŸ˜‰

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