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

Liked by Leonard

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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@wisfloj

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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my dr. did not recommend, I did some research and started with the 500mg 1xday and when my symptoms worsened I upped my dose and have stuck with it for about 6 months now. My neuro dr. thought it was s good idea also. She wanted me to try nortriptylyne in place of gabapentin but I hesitate to change since the gabapentin works although I notice some side effects, the worst is the short term memory loss but that could be my age too! I experienced some hair loss also but blamed that on the gaba, side effects I find seem to be temporary.

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It does. Thank you.

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@somisgirl

Has anyone been diagnosed with idiopathic small fiber neuropathy? Not caused by diabetes

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Hello @somisgirl, Welcome to Connect. There is another similar discussion where your post may receive more visibility. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where you can meet other members discussing small fiber neuropathy.

> Groups > Neuropathy > Small Fiber Neuropathy?
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

Idiopathic means it's not caused by diabetes since they are not able to say what the cause is. I have idiopathic small fiber peripheral neuropathy that my neurologist thought was probably hereditary. I only have numbness in my feet and just above the ankles with my neuropathy.

Have you been diagnosed with idiopathic small fiber neuropathy? Are you able to share your symptoms?

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Has anyone been diagnosed with idiopathic small fiber neuropathy? Not caused by diabetes

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@somisgirl

Has anyone been diagnosed with idiopathic small fiber neuropathy? Not caused by diabetes

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Hi, @somisgirl – I wanted to add my welcome to Mayo Clinic Connect and also let you know I've moved your post to the existing discussion on small fiber neuropathy @johnbishop mentioned so you can connect with others with the same diagnosis like @helennicola @jager5210 @geegie @steeldove @wisfloj and others.

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@lisalucier

Hi, @somisgirl – I wanted to add my welcome to Mayo Clinic Connect and also let you know I've moved your post to the existing discussion on small fiber neuropathy @johnbishop mentioned so you can connect with others with the same diagnosis like @helennicola @jager5210 @geegie @steeldove @wisfloj and others.

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Thank you Lisa–I'll see if I can find that.

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@johnbishop

Hello @somisgirl, Welcome to Connect. There is another similar discussion where your post may receive more visibility. I'm tagging our moderator @lisalucier to see if we should move your post to the following discussion where you can meet other members discussing small fiber neuropathy.

> Groups > Neuropathy > Small Fiber Neuropathy?
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

Idiopathic means it's not caused by diabetes since they are not able to say what the cause is. I have idiopathic small fiber peripheral neuropathy that my neurologist thought was probably hereditary. I only have numbness in my feet and just above the ankles with my neuropathy.

Have you been diagnosed with idiopathic small fiber neuropathy? Are you able to share your symptoms?

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Yes, I have been positively diagnosed with this. No one in my family has it…I am a 60-year-old woman, very active and in otherwise excellent health. This started with some pain in my feet which I assumed were a foot issue! Went to a podiatrist (two, actually) and got new insoles. Things just kept getting worse. Pins and needles, burning in both feet radiating up my legs. That's when my podiatrist sent me to have the nerve conduction tests. I had two and both came back normal. I had extensive blood work done, everything normal. Next was two "punch biopsies:, 6 months apart, that showed progressing small fiber degeneration. I now take 600mg Gabapentin 3X a day and a compound cream 3X a day to try to keep the symptoms at bay.

I am 5'11", 132 pounds. I have been a avid gym member for over 20 years. My diet is very healthy. .I have never been on any long-term medication in my life until now, and I am desperate to find out the cause rather than just treat the symptoms. And I do not want to take any opiods. I just want to find out if there is anything that I can do to reverse this condition. And yes, I have been on many of the nerve-regenerating vitamins with no results.

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@somisgirl

Yes, I have been positively diagnosed with this. No one in my family has it…I am a 60-year-old woman, very active and in otherwise excellent health. This started with some pain in my feet which I assumed were a foot issue! Went to a podiatrist (two, actually) and got new insoles. Things just kept getting worse. Pins and needles, burning in both feet radiating up my legs. That's when my podiatrist sent me to have the nerve conduction tests. I had two and both came back normal. I had extensive blood work done, everything normal. Next was two "punch biopsies:, 6 months apart, that showed progressing small fiber degeneration. I now take 600mg Gabapentin 3X a day and a compound cream 3X a day to try to keep the symptoms at bay.

I am 5'11", 132 pounds. I have been a avid gym member for over 20 years. My diet is very healthy. .I have never been on any long-term medication in my life until now, and I am desperate to find out the cause rather than just treat the symptoms. And I do not want to take any opiods. I just want to find out if there is anything that I can do to reverse this condition. And yes, I have been on many of the nerve-regenerating vitamins with no results.

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@somisgirl, I don't have the pain with my idiopathic small fiber peripheral neuropathy but I also was concerned about it progressing and was looking for something other than drugs to help. I found something that works for me and may or may not work for you but it may be worth a try. You can read my neuropathy story and what helps me here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985. I tried a few of the so called nerve regenerating vitamins with no success also.

I'm not sure if this is helpful but it may give you a better understanding of how neuropathy is diagnosed and why it sometimes is idiopathic because they are not able to diagnose a specific cause.

This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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@somisgirl

Has anyone been diagnosed with idiopathic small fiber neuropathy? Not caused by diabetes

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I have just two days ago
Just joined the discussion group

Liked by Lisa Lucier

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@somisgirl

Yes, I have been positively diagnosed with this. No one in my family has it…I am a 60-year-old woman, very active and in otherwise excellent health. This started with some pain in my feet which I assumed were a foot issue! Went to a podiatrist (two, actually) and got new insoles. Things just kept getting worse. Pins and needles, burning in both feet radiating up my legs. That's when my podiatrist sent me to have the nerve conduction tests. I had two and both came back normal. I had extensive blood work done, everything normal. Next was two "punch biopsies:, 6 months apart, that showed progressing small fiber degeneration. I now take 600mg Gabapentin 3X a day and a compound cream 3X a day to try to keep the symptoms at bay.

I am 5'11", 132 pounds. I have been a avid gym member for over 20 years. My diet is very healthy. .I have never been on any long-term medication in my life until now, and I am desperate to find out the cause rather than just treat the symptoms. And I do not want to take any opiods. I just want to find out if there is anything that I can do to reverse this condition. And yes, I have been on many of the nerve-regenerating vitamins with no results.

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I am in the same boat. Run, hike, swim 115 lbs 5' 8". Paleo diet. Eat no sugar. Idiopathic. Feet burn all the time mostly at night. Desperate for help…diagnosed with SFN two days ago…

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