Small Fiber Neuropathy?

Posted by elsa @elsa, Jan 23, 2019

Hello. I'm a 64 year old woman who has a complex medical history. I have relapsing-remitting MS (diagnosed in 2006, well-controlled; on Copaxone). I also ruptured my L5-S6 disc in 2009, subsequently had a microdiscectomy during which the surgeon tore the dura. Since the surgery, I developed chronic pain which worsened with time. Last March I graduated from Mayo's 3-week pain management program. Since then I no longer take any opiates or benzodiazepines which has been a huge step for the better.
That said, in the past few months my pain has spread and changed in nature. I now have bilateral burning sensations in my buttocks and hamstrings. This new pain seems to be burning in the outer part of my skin. It burns whenever I'm sitting or lying down. Any pressure at all on these areas causes really awful burning sensations. I am wondering if I have developed small fiber neuropathy.
Questions: 1) Does my description of this new pressure-sensitive, burning pain sound like it's SFN? 2) I notice that there is some discussion about immunity and SFN. Could my having MS (an autoimmune disease) somehow be causal in the development of SFN? 3) Can anyone recommend a doctor at Mayo in Rochester who could examine me and do the proper tests to hopefully diagnose what's going on?
Thank you much!!
–Elsa

Interested in more discussions like this? Go to the Neuropathy Support Group.

@hotfooted

I'm interested in trying to reverse my SFN and have seen it mentioned a few times on Connect… Please, please post all of your experiences or knowledge about this! I have SFN in my feet and it's coming up my legs now.. I am Type 2 Diabetic and have Erythromelalgia in my feet also.. I've changed my diet, leaving out sugar and have cut way back below 40 grams of carbs with each meal.. and am perfectly willing to change diet as much as it takes, if it helps me .. I use Frankincesnse and Myrrh rubbing oil on my feet as needed for red hot flares from EM.. this has helped reduce the flares a great deal.. We just returned from visiting our son (who is slowly passing on from Diabetes and Parkinson's), a 500 mile drive.. We put a foam mattress in the back of my Suburu and I rode lying down while Fred did the driving.. My diet while away for those 4 days did not have the usual lots of fiber, so I got constipated.. We stopped on the way home and bought some Magnesium Citrate, I took 4 of them… and by the time we got home I was relieved, thank goodness! I am continuing to take 2 Magnesium pills a day now and my feet feel different… I sent a message to my doctor asking his opinion on me beginning to take Magnesium Glycinate (non-diarrhea causing, as it is absorbed in a different part of the intestine I read) and am waiting to hear back from him… I also think I'll see about getting a B-12 shot.. If anyone here has any success in even slightly reversing SFN, I am very interested in what you have to say.

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Hello, @hotfooted – I moved your post to this existing discussion on small fiber neuropathy (SFN) so that you can connect with others with this diagnosis. Click VIEW & REPLY in your email notification to get to your post.

It sounds like you've been very proactive in pursuing options to treat your SFN. Hoping that some of the others in this discussion like will offer some input on your question related to potential reversal of this condition, like @steeldove @jenniferhunter @geegie @johnbishop @rwinney.

What did you and your doctor decide about the magnesium glycinate and getting a B-12 shot, @hotfooted?

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Hi @hotfooted — I have no medical training or background but I think it's only possible to reverse small fiber neuropathy is if it is caused by damage or compression of nerves which may be able to be treated with surgery or other method to fix the damaged nerve. If the nerve is dead, I don't think reversal is possible. Most treatments revolve around treating the symptoms of SFN – pain, tingling, burning, etc.. It's great that you are asking questions and doing your own research. Learning as much as you can about your health condition will hopefully allow you to ask better questions of your doctors on available treatments. It's great that you have eliminated sugar and have changed your diet. These are two biggies for helping with autoimmune diseases…actually are two biggies for plain having a healthy life.

@lisalucier asked if you decided about the magnesium glycinate and getting a B-12 shot. Was that recommended by your doctor for treating pain/burning of your SFN?

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@hotfooted

I'm interested in trying to reverse my SFN and have seen it mentioned a few times on Connect… Please, please post all of your experiences or knowledge about this! I have SFN in my feet and it's coming up my legs now.. I am Type 2 Diabetic and have Erythromelalgia in my feet also.. I've changed my diet, leaving out sugar and have cut way back below 40 grams of carbs with each meal.. and am perfectly willing to change diet as much as it takes, if it helps me .. I use Frankincesnse and Myrrh rubbing oil on my feet as needed for red hot flares from EM.. this has helped reduce the flares a great deal.. We just returned from visiting our son (who is slowly passing on from Diabetes and Parkinson's), a 500 mile drive.. We put a foam mattress in the back of my Suburu and I rode lying down while Fred did the driving.. My diet while away for those 4 days did not have the usual lots of fiber, so I got constipated.. We stopped on the way home and bought some Magnesium Citrate, I took 4 of them… and by the time we got home I was relieved, thank goodness! I am continuing to take 2 Magnesium pills a day now and my feet feel different… I sent a message to my doctor asking his opinion on me beginning to take Magnesium Glycinate (non-diarrhea causing, as it is absorbed in a different part of the intestine I read) and am waiting to hear back from him… I also think I'll see about getting a B-12 shot.. If anyone here has any success in even slightly reversing SFN, I am very interested in what you have to say.

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@hotfooted Kudos for for cutting out the sugar and carbs. That is a first step to improve diabetes. Magnesium is involved in detoxing the body and most of us are deficient.

I found an article about the role of oxidative stress and diabetes that I found interesting. Oxidative stress is what you want to prevent in the body with antioxidants that are found in healthy foods. It talks about a deficiency of glutathione (which is a master antioxidant in the body) because of diabetes. It also mentions another antioxidant alpha lipoic acid and discusses doses of this that at the highest doses prevented the deficit of glutathione. According to the article, that is what is missing starting in the smallest nerve fibers, and diabetes damages the respiratory pathways where the mitochondria in the cells create energy from cellular respiration. I do know that a precursor to glutathione is N aceylcysteine which can be purchased as a supplement. It would be best to consult a functional medicine specialist on this, as too much of NAC can be bad, and possibly reverse functioning and cause oxidative stress while the correct dose will help raise the body's glutathione.

Here is a quote from the article, The Roles of Oxidative Stress and Antioxidant Treatment in Experimental Diabetic Neuropathy.
https://diabetes.diabetesjournals.org/content/46/Supplement_2/S38
"we posit that lipid peroxidation causes mitochondrial DNA mutations that increase reduced oxygen species, causing further damage to mitochondrial respiratory chain and function and resulting in a sensory neuropathy, α-lipoic acid is a potent antioxidant that prevents lipid peroxidation in vitro and in vivo. We evaluated the efficacy of the drug in doses of 20, 50, and 100 mg/kg administered intraperitoneally in preventing the biochemical, electrophysiological, and nerve blood flow deficits in the peripheral nerves of experimental diabetic neuropathy, α-lipoic acid dose- and time-dependently prevented the deficits in nerve conduction and nerve blood flow and biochemical abnormalities (reductions in reduced glutathione and lipid peroxidation). The nerve blood flow deficit was 50% (P < 0.001). Supplementation dose-dependently prevented the deficit; at the highest concentration, nerve blood flow was not different from that of control nerves. Digital nerve conduction underwent a dose-dependent improvement at 1 month (P < 0.05). By 3 months, all treated groups had lost their deficit. The antioxidant drug is potentially efficacious for human diabetic sensory neuropathy."

Also this link has an easy to understand explanation of the roles of antioxidants and disease.
https://drhyman.com/blog/2010/05/19/glutathione-the-mother-of-all-antioxidants/

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@jenniferhunter

@hotfooted Kudos for for cutting out the sugar and carbs. That is a first step to improve diabetes. Magnesium is involved in detoxing the body and most of us are deficient.

I found an article about the role of oxidative stress and diabetes that I found interesting. Oxidative stress is what you want to prevent in the body with antioxidants that are found in healthy foods. It talks about a deficiency of glutathione (which is a master antioxidant in the body) because of diabetes. It also mentions another antioxidant alpha lipoic acid and discusses doses of this that at the highest doses prevented the deficit of glutathione. According to the article, that is what is missing starting in the smallest nerve fibers, and diabetes damages the respiratory pathways where the mitochondria in the cells create energy from cellular respiration. I do know that a precursor to glutathione is N aceylcysteine which can be purchased as a supplement. It would be best to consult a functional medicine specialist on this, as too much of NAC can be bad, and possibly reverse functioning and cause oxidative stress while the correct dose will help raise the body's glutathione.

Here is a quote from the article, The Roles of Oxidative Stress and Antioxidant Treatment in Experimental Diabetic Neuropathy.
https://diabetes.diabetesjournals.org/content/46/Supplement_2/S38
"we posit that lipid peroxidation causes mitochondrial DNA mutations that increase reduced oxygen species, causing further damage to mitochondrial respiratory chain and function and resulting in a sensory neuropathy, α-lipoic acid is a potent antioxidant that prevents lipid peroxidation in vitro and in vivo. We evaluated the efficacy of the drug in doses of 20, 50, and 100 mg/kg administered intraperitoneally in preventing the biochemical, electrophysiological, and nerve blood flow deficits in the peripheral nerves of experimental diabetic neuropathy, α-lipoic acid dose- and time-dependently prevented the deficits in nerve conduction and nerve blood flow and biochemical abnormalities (reductions in reduced glutathione and lipid peroxidation). The nerve blood flow deficit was 50% (P < 0.001). Supplementation dose-dependently prevented the deficit; at the highest concentration, nerve blood flow was not different from that of control nerves. Digital nerve conduction underwent a dose-dependent improvement at 1 month (P < 0.05). By 3 months, all treated groups had lost their deficit. The antioxidant drug is potentially efficacious for human diabetic sensory neuropathy."

Also this link has an easy to understand explanation of the roles of antioxidants and disease.
https://drhyman.com/blog/2010/05/19/glutathione-the-mother-of-all-antioxidants/

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I have SFN but not diabetes and take 500mg R-ALA 2xday which I think does help along with gabapentin at night.

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HelenNicola, just curious as to why you take 1000mg. R-ala? I take 100mg. 3x per day (based on my research)
Did a dr. Recommend that amount? I do know the R form of alpha lipoic acid is THE way to go, and it’s a first line of defense for neuropathy in Europe. Perhaps I need to increase the amount? It helped last fall, then I was losing hair and blamed that so I quit.
In hindsight I believe hair loss was stress related as I couldn’t get an answer about what was wrong, who to see, resorting to Dr. Google and getting scared. Thank you

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Hi Helen,

What is R-ala? Is it a particular brand that has this particular formulation?

TIA,
Barry

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ALA is alpha lipoic acid, there is an S and an R component in it. The R is the active/helpful one. Many brands and strengths on Amazon. My research led me to conclude that it should be stabilized and also get bio-enhanced Na-rala. Not a dr. nor scientist,that's all I got! LOL

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Thanks..and you say it helps right?

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It’s hard to know for sure with neuropathy, I also take acetyl L Carnitine. Some days are better than others, sometimes pain, burning and numbness changes within the hour, some nights I sleep well without pain and sometimes I need my socks with gel inserts from the freezer, also on Amazon by Natra Cure. Just a merry go round of symptoms and solutions and supplements…oh, one more S word, sucks!

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@jager5210

Hi Helen,

What is R-ala? Is it a particular brand that has this particular formulation?

TIA,
Barry

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Hi Jager5210, yes, the R-Ala is supposedly the one that is beneficial although the brand I take (Dr. Danielle’s) Amazon has both R and S. I tried stopping it once and did notice a difference in my pain level. I also tried B12, BComplex, benfotiamine and acetyl-l-carnitine which I felt did nothing for me, I actually thought the B12 made my pain worse. I have not tried other brands but there are probably comparable but less expensive brands available. Hope this info helps.

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