Treatment options that have worked for Small Fiber Neuropathy

I think the previous article about which you complained was pretty much on point. (BTW, I retired as editor of a clinical surgery journal, so I do know something about medical research. I also have suffered since 1991 with PN, and have since been diagnosed with at least 4 other forms of neuropathy, including idiopathic multifocal polyneuropathy.) While neurologists learn about PN in their first year, they are frustrated because it has no cures or even treatments other than symptomatic treatment (which is not very effective in all or even most cases. So they go on to concentrate on epilepsy and many other neuropathies that are more well-studied and "interesting." and that have proven treatments or even cures. Finding a neurologist who really knows and cares about PN is very difficult. After more than a decade, I recently found one!

I have quite a few chronic (and sometimes also incurable) comorbidities, and my new neurologist has confirmed that my PN can be associated with, exacerbative, or even causative of several of them--not including the rare, incurable, indolent lymphoma which may ultimately do me in and which was probably the originator of my 34-year journey with PNs.

Look, look, look online and elsewhere for neurologists who include PN in their specialties or concentrations, and pray that at least one of them works within a reasonable drive-time of where you live.

Before I begin, full disclosure. I am a retired physician (Board Certified Emergency Medicine) and a patient (idiopathic small fiber PN; coincidently, I even suffer from lymphoma, much like the poster above. However, none of my many doctors link it to the PN). As a patient, I have been subject to many of the same frustrations expressed here (difficult disease, unsatisfactory treatment, etc.). I have "fired" one of my neurologists because of a clash of personalities, not his lack of knowledge. I have also experienced the issue noted above about neurologists being frustrated with PN, and thus gravitating towards patients with diseases they can treat more successfully. For that reason, it would be optimal to find a neurologist who specializes in neuromuscular diseases. That can be hard to do in the medical system we have in this country. A general neurologist would be second best.

This forum shouldn't become a debate between individuals trying to prove their point. Therefore, I will not debate the 2 posters who disagree with me point by point, except to say that the linked article by Suzy Cohen is filled with so much misinformation and unscientific opinions that it would take a short essay to refute it. This is not surprising, nor unusual. Suzy Cohen is a pharmacist by training, not a physician. By her own admission, she "specializes" in thyroid problems, not neurology or PN, although how she specializes in any particular medical field as a pharmacist is unclear to me.

Moreover, she is also an author of "medical" books which are sold to the general public for a profit. She also sells her own line of unproven supplements to the public, again at a profit. She is a media personality. All of this is listed by the Foundational For Peripheral Neuropathy as warning signs to patients to be careful about when choosing to accept advice or purchase supplements or devices.

For the non medical reader interested in learning about the science of PN, it's diagnosis, treatment, alternative treatments, etc., I recommend the short book "Peripheral Neuropathy: What It Is and What You Can Do To Feel Better" By Janice F. Wiesman, MD. The book was published in 2016, so it is not completely up to date, but it is still very relevant and accurate. Dr. Wiesman was a board certified neurologist and specialist in neuromuscular diseases, which includes PN. Unfortunately she passed away in 2020.

If I were a practicing neurologist, I would give this book away free to all my PN patients.

Hello @moakes and @martame, Welcome to Connect. I'm sorry to hear that you have joined the neuropathy club. I shared my neuropathy journey story in another discussion here - https://connect.mayoclinic.org/comment/310341/. Unfortunately there really isn't a cure for neuropathy but there are many treatments that may or may not help with the different symptoms. The best thing we can do as patients is to learn as much as we can about our condition and what treatments are available that might provide some relief.

To learn more about neuropathy, here are my two favorites:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
--- Neuropathy Commons: https://neuropathycommons.org/

There are also many different discussions here on Connect where you can learn what other members have found helps them. Here is a link that shows the different discussions and comments for "small fiber neuropathy what helps" -- https://connect.mayoclinic.org/search/discussions/?search=small+fiber+neuropathy+what+helps.

It sounds like you have tried a few of the alternative treatments as well as the medications used for neuropathy pain but the symptoms seem to be getting worse. The Foundation for Peripheral Neuropathy has a fairly comprehensive list of the complementary and alternative treatments for neuropathy here - https://www.foundationforpn.org/treatments/.

Were your doctor or neurologist able to identify any possible causes of the SFN?

What Garito says in this context is absolutely correct:

While neurologists learn about PN in their first year, they are frustrated because it has no cures or even treatments other than symptomatic treatment (which is not very effective in all or even most cases. So they go on to concentrate on epilepsy and many other neuropathies that are more well-studied and "interesting." and that have proven treatments or even cures. Finding a neurologist who really knows and cares about PN is very difficult.

l have had symptoms in my legs and feet for about 4years, cramping and pain etc. referral to a neurologist "can,t help you, what do you want for pain" l am a retired RN and dont beleive medications are the best help. movement therapy , some herbal remedies are often more effective and beneficial. I am often exhausted with trying to live a normal single life with this affliction...so am looking for support in dealing with this elusive disability. No, the neuroligist offered no cause.....He appeared uninterested! any how I will troll thru all the suggestions on this site thanks Susan

l have had symptoms in my legs and feet for about 4years, cramping and pain etc. referral to a neurologist "can,t help you, what do you want for pain" l am a retired RN and dont beleive medications are the best help. movement therapy , some herbal remedies are often more effective and beneficial. I am often exhausted with trying to live a normal single life with this affliction...so am looking for support in dealing with this elusive disability. No, the neuroligist offered no cause.....He appeared uninterested! any how I will troll thru all the suggestions on this site thanks Susan

Before I begin, full disclosure. I am a retired physician (Board Certified Emergency Medicine) and a patient (idiopathic small fiber PN; coincidently, I even suffer from lymphoma, much like the poster above. However, none of my many doctors link it to the PN). As a patient, I have been subject to many of the same frustrations expressed here (difficult disease, unsatisfactory treatment, etc.). I have "fired" one of my neurologists because of a clash of personalities, not his lack of knowledge. I have also experienced the issue noted above about neurologists being frustrated with PN, and thus gravitating towards patients with diseases they can treat more successfully. For that reason, it would be optimal to find a neurologist who specializes in neuromuscular diseases. That can be hard to do in the medical system we have in this country. A general neurologist would be second best.

This forum shouldn't become a debate between individuals trying to prove their point. Therefore, I will not debate the 2 posters who disagree with me point by point, except to say that the linked article by Suzy Cohen is filled with so much misinformation and unscientific opinions that it would take a short essay to refute it. This is not surprising, nor unusual. Suzy Cohen is a pharmacist by training, not a physician. By her own admission, she "specializes" in thyroid problems, not neurology or PN, although how she specializes in any particular medical field as a pharmacist is unclear to me.

Moreover, she is also an author of "medical" books which are sold to the general public for a profit. She also sells her own line of unproven supplements to the public, again at a profit. She is a media personality. All of this is listed by the Foundational For Peripheral Neuropathy as warning signs to patients to be careful about when choosing to accept advice or purchase supplements or devices.

For the non medical reader interested in learning about the science of PN, it's diagnosis, treatment, alternative treatments, etc., I recommend the short book "Peripheral Neuropathy: What It Is and What You Can Do To Feel Better" By Janice F. Wiesman, MD. The book was published in 2016, so it is not completely up to date, but it is still very relevant and accurate. Dr. Wiesman was a board certified neurologist and specialist in neuromuscular diseases, which includes PN. Unfortunately she passed away in 2020.

If I were a practicing neurologist, I would give this book away free to all my PN patients.

Before I begin, full disclosure. I am a retired physician (Board Certified Emergency Medicine) and a patient (idiopathic small fiber PN; coincidently, I even suffer from lymphoma, much like the poster above. However, none of my many doctors link it to the PN). As a patient, I have been subject to many of the same frustrations expressed here (difficult disease, unsatisfactory treatment, etc.). I have "fired" one of my neurologists because of a clash of personalities, not his lack of knowledge. I have also experienced the issue noted above about neurologists being frustrated with PN, and thus gravitating towards patients with diseases they can treat more successfully. For that reason, it would be optimal to find a neurologist who specializes in neuromuscular diseases. That can be hard to do in the medical system we have in this country. A general neurologist would be second best.

This forum shouldn't become a debate between individuals trying to prove their point. Therefore, I will not debate the 2 posters who disagree with me point by point, except to say that the linked article by Suzy Cohen is filled with so much misinformation and unscientific opinions that it would take a short essay to refute it. This is not surprising, nor unusual. Suzy Cohen is a pharmacist by training, not a physician. By her own admission, she "specializes" in thyroid problems, not neurology or PN, although how she specializes in any particular medical field as a pharmacist is unclear to me.

Moreover, she is also an author of "medical" books which are sold to the general public for a profit. She also sells her own line of unproven supplements to the public, again at a profit. She is a media personality. All of this is listed by the Foundational For Peripheral Neuropathy as warning signs to patients to be careful about when choosing to accept advice or purchase supplements or devices.

For the non medical reader interested in learning about the science of PN, it's diagnosis, treatment, alternative treatments, etc., I recommend the short book "Peripheral Neuropathy: What It Is and What You Can Do To Feel Better" By Janice F. Wiesman, MD. The book was published in 2016, so it is not completely up to date, but it is still very relevant and accurate. Dr. Wiesman was a board certified neurologist and specialist in neuromuscular diseases, which includes PN. Unfortunately she passed away in 2020.

If I were a practicing neurologist, I would give this book away free to all my PN patients.