How serious is SFN.. My feet hurt so bad when I stand or walk..

Posted by hotfooted @hotfooted, Apr 15, 2019

I have had neuropathy in my feet and hands for a few years, gradually getting worse. Also Erythromelalgia.. I am handicapped by these conditions and wonder how they have affected others. I have just been diagnosed with Diabetes Type 2. Please tell me that the neuropathy isn't going to take my life..

I'm interested in the replies you get. I'm 72 and I have SFN. I saw one neurologist for over 3 years who said that nerve damage in not repairable. I was already taking Neurontin, have been for 20 years for degenerative disk disease related pain but he suggested Cymbalta and Lyrica. I told him I did not want to take anything that increased my risk for Alzheimer's and that's where we left it. He never told me in those sub 15 minute sessions what I can expect or what else I could do to minimize my pain which is getting worse. I decided to seek a consult with a hospital group in Atlanta that advertise they have a multi-disciplinary approach to PN. I saw a neurologist in company with a high school student and doc on fellowship. Early in the examination, I showed her a list of questions for which I was seeking answers and referenced Dr. Perlmutter, a neurologist I've seen on PBS, when asking about conditions like gut issues which, if resolved resulted in PN going away. This resulted in her saying; (this is a direct quote) "Why don't you just go home and die". Believe it or not, things just got worse from there. So, after 3.5 years and 2 neurologists, I still have no idea what SFN is or what my prospects are or what else I might do besides take Neurontin. BTW, I'm a retired psychologist and I never said anything like this at all to anyone. What in the hell is wrong with the medical profession?

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Hi @hotfooted — I thought you might be interested in the following article I found.

Cleveland Clinic Journal of Medicine – Small fiber neuropathy: A burning problem
https://www.mdedge.com/ccjm/article/95083/diabetes/small-fiber-neuropathy-burning-problem

I only have numbness with my small fiber peripheral neuropathy and I know your condition is much harder to deal with the Erythromelalgia and Type 2 Diabetes. Have your doctors provided any treatment for these conditions? I was wondering if these two conditions may also be contributing to your small fiber neuropathy. I did see that Mayo Clinic has a Erythromelalgia Clinic in Minnesota. I'm not sure if it's an option for you but it may be something to consider.

Erythromelalgia Clinic in Minnesota
https://www.mayoclinic.org/departments-centers/erythromelalgia-clinic-in-minnesota/overview/ovc-20421220

Hoping you find some answers.

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@jager5210

I'm interested in the replies you get. I'm 72 and I have SFN. I saw one neurologist for over 3 years who said that nerve damage in not repairable. I was already taking Neurontin, have been for 20 years for degenerative disk disease related pain but he suggested Cymbalta and Lyrica. I told him I did not want to take anything that increased my risk for Alzheimer's and that's where we left it. He never told me in those sub 15 minute sessions what I can expect or what else I could do to minimize my pain which is getting worse. I decided to seek a consult with a hospital group in Atlanta that advertise they have a multi-disciplinary approach to PN. I saw a neurologist in company with a high school student and doc on fellowship. Early in the examination, I showed her a list of questions for which I was seeking answers and referenced Dr. Perlmutter, a neurologist I've seen on PBS, when asking about conditions like gut issues which, if resolved resulted in PN going away. This resulted in her saying; (this is a direct quote) "Why don't you just go home and die". Believe it or not, things just got worse from there. So, after 3.5 years and 2 neurologists, I still have no idea what SFN is or what my prospects are or what else I might do besides take Neurontin. BTW, I'm a retired psychologist and I never said anything like this at all to anyone. What in the hell is wrong with the medical profession?

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Hi @jager5210 — welcome to Connect. Sorry about your experience with an ignorant and insensitive neurologist on PBS. It's great that you are advocating for yourself and asking questions. The more you learn about your condition, the better questions you can ask and hopefully find a treatment that works for you. I have idiopathic small fiber peripheral neuropathy but only have the numbness. My story is posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might also want to consider joining the following discussions on Connect to learn what others have shared about their neuropathy treatments.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

> Groups > Neuropathy > Just Diagnosed with Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/just-diagnosed-2/

Also thought you might find the following information helpful.

Fibromyalgia, Small Fiber Neuropathy and Eye-Opening Developments in Pain Research: An FM and Pain Researcher Talks – Apr 13, 2015
http://bit.ly/2k9rWD2

May I ask how you were diagnosed with small fiber neuropathy?

Liked by Lisa Lucier

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@johnbishop

Hi @jager5210 — welcome to Connect. Sorry about your experience with an ignorant and insensitive neurologist on PBS. It's great that you are advocating for yourself and asking questions. The more you learn about your condition, the better questions you can ask and hopefully find a treatment that works for you. I have idiopathic small fiber peripheral neuropathy but only have the numbness. My story is posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

You might also want to consider joining the following discussions on Connect to learn what others have shared about their neuropathy treatments.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

> Groups > Neuropathy > Just Diagnosed with Small Fiber Neuropathy
https://connect.mayoclinic.org/discussion/just-diagnosed-2/

Also thought you might find the following information helpful.

Fibromyalgia, Small Fiber Neuropathy and Eye-Opening Developments in Pain Research: An FM and Pain Researcher Talks – Apr 13, 2015
http://bit.ly/2k9rWD2

May I ask how you were diagnosed with small fiber neuropathy?

Jump to this post

Sorry, my earlier reply was incomplete and sent errantly by hitting the enter key.

I ended up giving you a beginning of my history with SFN. Where I left off was recounting of my efforts to get off of Neurontin and Flexeril. The result was that the cold I felt in my feet from the beginning of my difficulties in 1999 began to move up my legs. In 1999, I started wearing socks to bed along with sweats and sleeping under 2 comforters and a blanket under flannel sheets even in summer. With a reduced intake of Neurontin and Flexeril, the cold feeling turned into a burning and pins and needles sensation at times. It soon spread to my arms and face even though my doctor told me my face should not be affected. At times, my ears and eyes also burn. My primary care insisted I get back on my regular dose of Neurontin but I was determined to not do that.

When I finally went to a neurologist he did some testing and found that my B6 level was 10 times the normal rate. He was convinced this was the cause of my PN. I told him that because I had been having IB symptoms that were getting worse I went to a gastroenterologist who scoped me and told me to not eat spicy foods. In frustration, I paid $3,000.00 to a Buckhead holistic practice. The doctor did not tell me she was not going to be at the results conference which was conducted by a nurse who, among other things, told me I did not have any B vitamins. Along with a prescription of Cipro for intestinal bacteria, an OTC recommendation for a parasite, she also recommended a compounded B vitamin which would have been quite expensive. Initially, I did the antibiotic and OTC rec for the parasite. I became very ill with diarrhea around the clock including throughout the night. I went back to the gastroenterologist who put me on Creon which I was on for over a year. Because I could not get in touch with him as promised I saw another gastroenterologist who said I should never have been on Creon. My diet since 1999, went from organic foods with mostly vegetables to vegan to giving up beans, tomatoes/nightshades as Gundry recommends. This helped by IB symptoms a lot but still have too many BMs. Currently I'm more Keto. Anyway, after my acute diarrhea ended I decided I needed to do something about my vitamin B deficit so I bought a multi-B complex and took it prior to seeing the neurologist. After his findings of elevated B6, I discontinued any supplement with B6 in it and I began limiting my intake of nuts and other B6 foods. The neurologist had conducted an exam for large fiber neuropathy on my first visit. He found, which I already knew, that I had carpet tunnel in both arms but no indication of large fiber neuropathy. He said they could biopsy for SFN but I asked if he doubted that I had it and whether the biopsy would be worth the discomfort. He said no. So I focused on reducing B6 in my diet. After about a 1.5 years, I saw him again. He did more testing and found my B6 was still elevated but not nearly as much. I told him I had taken a multivitamin with B6 in it before I saw him because my pain was worsening and I read that sometimes it's due to a deficit in B vitamins. I was convinced the neurologist thought my PN was due to me sabotaging my treatment by taking B6 even though I told him that I had the burning since 1999 which was probably masked by the 1600 mg of Neurontin and 10 mg of Flexeril I had been taking. I also mentioned that I had told the doctor at the holistic practice that I had cold feet and this was prior to me taking a multi-B complex supplement. Anyway, after 3.3 years, I returned to the neurologist thinking that if I got the biopsy, maybe this would make a difference in how I was treated. The 2 biopsies on my left leg resulted in the SFN diagnosis. It was only then that I googled SFN and found that it can have a 100 causes and that if the underlying condition is treated, the SFN in about 50% of the cases resolves.

At this point I decided to see a neurologist at a major hospital in Atlanta that advertised that they had a multi-disciplinary approach to treating PN. And it was after mention Dr. Perlmutter, a neurologist who often appears on PBS to the neurologist I saw that she said; "Why don't you just go home and die!" and why don't you just make an appointment with Dr. Google. Seriously, she seemed to take pleasure in telling me there was nothing that could be done. I asked about seeing a gastroenterologist or rheumatologist and she said "NO!".

So this is where I'm at. Still taking Neurontin nightly and Flexeril when I haven't slept for a few days. Now my mouth is extremely dry in the mornings and there is some numbness around my gums and front part of my tongue. My neck is now quite painful and I've had swollen glands for over 6 months. I've seen my new primary twice for the swollen glands and finally a referral was made for an ENT later this month.

I'll add this comment. One of the questions I wanted the neurologist to answer was whether root canals could cause my problems as I had 3 of them prior to the onset of my problems back in 1999, 2 of which were done by a quack regular dentists who said he just had training on this and could do it even though he did teeth adjacent to the one I complained about (later finding out that the tooth I complained about was infected but not operable on by an amateur because the roots were twisted). I recently found a dentist who has referred me to a specialist who does cone beam scanning. This dentist found 3 teeth that he suspects are necrotic because they did not respond to a cold test. Oh, if only a few tooth extractions would clear up my problems.

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I am also frustrated by the medical profession. I was diagnosed with SFN via punch biopsy and my follow- up with my neurologist was more than disappointing. Was offered two meds that would not mix well with my depression or high myopia . So…off you go….no advice for you since your neurapothy does not fit into a neat category. ( Probably heredity ) I am beginning to think all doctors of all types are horrible. Very little compassion out there…

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