Ideas for pain relief from Small Fiber Neuropathy (SFN)

Posted by somisgirl @somisgirl, Fri, Sep 6 4:43pm

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!

I understand the way Medicare at Mayo works…my Sister went there and explained this all to me. So that is not the issue. The issue is they will not take me in Phoenix because I am on Medicare…and for me, as I said, I can self pay and they still will not take me because I am on Medicare. When I got my AARP UHC part F supplement I was told I could go to any hospital or Dr…including the Mayo Clinic. I guess that was not the case…Pam

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@rwinney

Also, Pam, your neurologist will (should) do a very extensive workup on you to search for a cause. Mine took over 4 months to conclude.

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Good to know…!

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@tigreyes2004

I have Medicare & a 2nd Insurance & the Scottsdale Mayo Clinic does not take Medicare consignment but I has surgery at the Phoenix Mayo in 2018 & what they do is , Medicare sends you the check & you pay the Mayo Clinic but Mayo Clinic can charge up to 15% more than what Medicare pays. I have had a lot done there & I had no problems but about $10.00 out of my pocket. People are getting it confused. It is not that they don't take it but you have to go through the red tape of getting the payment from Medicare but it worked out perfectly for me & they sent me the check quickly within 3 weeks so you should look into better.

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Ok, that makes a little more sense now.

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@rwinney

Ok, that makes a little more sense now.

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None of this info in new to me. I knew all about the 15 percent more and I was willing to pay cash…they still would not take me because I have a Medicare #. It makes no sense…

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Is Scottsdale a primary care clinic? I do know that in order to go to a primary care clinic, you need to have started going there prior to being on Medicare. They, I believe, will accept Medicare patients who started there while on another insurance and transitioned into Medicare. Another way to get in the door is to go through the ER. A neighbor of ours went to the ER in Jax and then was able to see drs. In the clinic…..not the primary care clinic but the one with the specialists. It’s very confusing to someone who doesn’t get how this all works. Yes, that 15% extra that Mayo charges could get expensive if your secondary insurance doesn’t cover most of it. Thankfully, ours does and I’m sure I didn’t pay more than $50 out of my pocket all last year.

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Hi all, I'm just catching up with this discussion re Mayo Clinic, getting an appointment and accepting Medicare patients. Here's some general information that validates information several of you have already shared and perhaps answers some of the general questions raised.

Appointment Denials
In some areas (departments and clinics), demand for services exceeds Mayo Clinic's ability to see all the patients. Physician experts' review may lead them to determine that Mayo Clinic cannot offer further treatment for some patients. Mayo’s goal is to provide the best care each patient needs, but we don't not want you to incur additional costs for evaluation or travel if there is not care to offer that is different from what you’re already receiving.

– Frequently asked questions about scheduling appointments at Mayo Clinic https://www.mayoclinic.org/appointments/faq

Mayo Clinic and Medicare
Mayo Clinic accepts new Medicare patients. Mayo is one of the largest Medicare providers in the country. Unfortunately, not all requests received from Medicare patients who want to come to Mayo Clinic can be honored. Medicare patients are accepted in all practice areas where there is capacity (appointments available) to accommodate them and most importantly, as the medical needs of these patients require. The only exception is the small family medicine facility in Glendale, Ariz.

Mayo Clinic primary care does accept Medicare, medicaid, medica, MMSI and Mayo Health Solution insurance. If a patient lives outside of the boundaries that we serve (i.e., the states where there is a Mayo Clinic campus), they will be advised to seek health care closer to their home.

Mayo Clinic is a non-participating provider under Medicare Part B. This means that Mayo sees Medicare patients, but do not always accept assignment for payment. In these cases, Medicare pays the patient who is then responsible for reimbursing Mayo Clinic for the services provided.

You can find more information on Mayo Clinic's website:
– Mayo and Medicare https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare
– More about Medicare https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance/accepted-insurance/medicare/more-on-medicare

Don't hesitate to contact Mayo Clinic directly with your questions to get answers specific to your condition and location http://mayocl.in/1mtmR63

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@burningfeetinphoenix

I understand the way Medicare at Mayo works…my Sister went there and explained this all to me. So that is not the issue. The issue is they will not take me in Phoenix because I am on Medicare…and for me, as I said, I can self pay and they still will not take me because I am on Medicare. When I got my AARP UHC part F supplement I was told I could go to any hospital or Dr…including the Mayo Clinic. I guess that was not the case…Pam

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I'm a patient there at the Scottsdale & Phoenix Mayo & I am on Medicare & Mutual of Omaha & have the F plan. Next year they are doing away with that plan but if you have it now then your grandfathered it. I have several dr's I see there & had a endoscopy in March of 2018 so unless they they changed I don't know why your having a difficult time.

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@burningfeetinphoenix asks: Has anyone looked at the research being done on Capsaicin for SFPN? I found this report just published in "Pain Reports" published by scientists in France. I cannot post the link in the forum but I am posting the name of the article and it can be accessed on-line. I have severe to moderate sweat glands in the feet and legs as well as severely reduced small epidermal nerve fiber density in these same places (detected by proximal and distal skin biopsies). The research on the mechanisms causing the heat sensitivity and other symptoms is interesting and often difficult to understand. However, it has helped me zero in on my SFPN and I am continuing to learn a lot about my condition. Here is the name of the article: "Functional and histological improvements of small nerve neuropathy after high-concentration capsaicin patch application a case study". Bu Trouvin, Anne-Priscillea and Perrot, Sergea. There have been clinical trials using the cream version of Capsaicin and these studies were not as promising..Chloride conduction seems to be a key factor in small fiber nerve function and growth… I will continue to research and report back… Pam

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@burningfeetinphoenix

@burningfeetinphoenix asks: Has anyone looked at the research being done on Capsaicin for SFPN? I found this report just published in "Pain Reports" published by scientists in France. I cannot post the link in the forum but I am posting the name of the article and it can be accessed on-line. I have severe to moderate sweat glands in the feet and legs as well as severely reduced small epidermal nerve fiber density in these same places (detected by proximal and distal skin biopsies). The research on the mechanisms causing the heat sensitivity and other symptoms is interesting and often difficult to understand. However, it has helped me zero in on my SFPN and I am continuing to learn a lot about my condition. Here is the name of the article: "Functional and histological improvements of small nerve neuropathy after high-concentration capsaicin patch application a case study". Bu Trouvin, Anne-Priscillea and Perrot, Sergea. There have been clinical trials using the cream version of Capsaicin and these studies were not as promising..Chloride conduction seems to be a key factor in small fiber nerve function and growth… I will continue to research and report back… Pam

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Hi @burningfeetinphoenix – I have not seen the report. Here is the link you were trying to post. I think you should be able to post links soon. New members have to wait for a short period of time before they are able to post links – this is to prevent spammers from joining and spamming Connect with links.

Functional and histological improvements of small nerve neuropathy after high-concentration capsaicin patch application – A case study
https://journals.lww.com/painrpts/Fulltext/2019/08000/Functional_and_histological_improvements_of_small.7.aspx

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That's it thanks John!!

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@burningfeetinphoenix
Hi, Pam
Yes, I've looked into it and noted that the article which you mention is a single case study. I've also come across other studies which have given me pause, such as https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057686/ which concluded the following:
"Topical capsaicin leads to degeneration of sudomotor, vasomotor and pilomotor nerves accompanied by impairment of sudomotor, vasomotor and pilomotor function. These results suggest the susceptibility and/or pathophysiologic mechanisms of nerve damage may differ between autonomic and sensory nerve fibers treated with capsaicin and enhances the capsaicin model for the study of disease modifying agents. The data suggest caution should be taken when topical capsaicin is applied to skin surfaces at risk for ulceration, particularly in neuropathic conditions characterized by sensory and autonomic impairment."

In the circumstances, I moved on. – Liz

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Thanks @elizm…You are probably right but the the paper by the French researchers is dated 2019 and the NIH one is 2010. Perhaps progress has been made. I'll ask my neurologist. Pam

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@burningfeetinphoenix

@burningfeetinphoenix asks: Has anyone looked at the research being done on Capsaicin for SFPN? I found this report just published in "Pain Reports" published by scientists in France. I cannot post the link in the forum but I am posting the name of the article and it can be accessed on-line. I have severe to moderate sweat glands in the feet and legs as well as severely reduced small epidermal nerve fiber density in these same places (detected by proximal and distal skin biopsies). The research on the mechanisms causing the heat sensitivity and other symptoms is interesting and often difficult to understand. However, it has helped me zero in on my SFPN and I am continuing to learn a lot about my condition. Here is the name of the article: "Functional and histological improvements of small nerve neuropathy after high-concentration capsaicin patch application a case study". Bu Trouvin, Anne-Priscillea and Perrot, Sergea. There have been clinical trials using the cream version of Capsaicin and these studies were not as promising..Chloride conduction seems to be a key factor in small fiber nerve function and growth… I will continue to research and report back… Pam

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@burningfeetinphoenix My pain specialist suggested I try capsaicin, and I saw no improvement. Stepping up to the level of having application in the doctor's office sounded like a real hassle. I learned that I have to wear gloves to rub the cream on my feet because even after washing my hands thoroughly, if I touched my eye, it burned badly.

Jim

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Hello @dazzah1234, I would like to add my welcome to Connect along with @artscaping and other members. I chose to answer your private message here in the Ideas for pain relief from Small Fiber Neuropathy (SFN) discussion in the Neuropathy group so that you could meet other members with small fiber neuropathy and learn what helps them. I have small fiber peripheral neuropathy but I only have the numbness and no real pain. I shared my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There is also another discussion that might be helpful to read through and meet other members with SFN.
> Groups > Neuropathy > Small Fiber Neuropathy?
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

In your message you mentioned that you use methadone 20 mg 10 mg twice daily and that has helped over the last 4 years but you have had a increase in pain and and are hoping to get it back under control. Have you discussed any other medications or supplements with your doctor that might work better for the pain?

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Has anyone tried electrotherapy for small fiber neuropathy, specifically the ReBuilder? I read about in the book "Reversing Neuropathy" by Dr. Brian Prax. It is like a TENS unit, but it supposedly transmits nerve signals from one foot to another. It is supposed to measure your actual nerve signals and tries to cancel out the "bad" signal. I talked to a local retired physical therapist who has used it extensively and he says he has a 80% improvement rate. I made an appointment with another physical therapist to try it out. Does anyone know anything about Dr. Brian Prax? He seems to have a lot of ideas on how to relieve neuropathy symptoms.

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