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 group.

@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

Jump to this post

I have just two days ago
Just joined the discussion group

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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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@somisgirl

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

Jump to this post

Yes I have.

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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.

Jump to this post

@somisgirl I also have idiopathic small fiber peripheral neuropathy, and the beginning of autonomic neuropathy. All five of my siblings and our father had or have it. My siblings have been able to treat it, and I don't know if any of them have the burning pain that I do. The disease seems to be different for each individual.

One thing I've learned is that it's a progressive disease, and there's not a confirmed cure, though there are many meds and other things that treat the symptoms, as @johnbishop explains so well.

I've tried every neuropathy meds and a long list of medications that sometimes help with the pain. With only a few exceptions, they either didn't have any effect on the pain, or had unacceptable side effects. Two years ago I had a Burst DR spinal cord stimulator implant, and I had significant relief. I'd forgotten how it felt to be nearly pain free. Over the two years, the Abbott tech has had to make adjustments to the controller every 3 months, because the pain will gradually worsen. Understand that this is my own experience, and that many people have a much better outcome, over a long period of time.

I'm seeing a doctor tomorrow to discuss a dorsal root ganglion stimulator implant, which targets the areas of pain more precisely. I'm not sure if I'll try it, but I'm still doing the research on it, which is pretty sparse because it's a new product. On Monday, I have an appointment with the pain specialist, and I'll be talking about it with him. I'm also going to ask him about a medication pump.

One thing that I did was have six sessions with a pain therapist, and I use some of the tools she taught me. The pain in my feet might be only a 5 or so during the day, but when I lie down to sleep, it shoots up to 8. That's when the therapist's practices help.

I still hold out hope for a non- narcotic solution. I'm trying to take as little morphine as possible, but it's the only thing that has touched the pain. Actually, a couple of meds did help. Lyrica was one, but after just a few weeks, starting at a low dose, it put me in the hospital. I was incoherent, had no memory, etc. Bummer. I tried desipramine a couple of months ago and it was helping, but I had to run to the bathroom up to 24 times a day. Not acceptable!

Read all you can, with an open mind, along with a little skepticism. There are certainly scams in abundance to beware of. But I'm confident that there's something out there that will give you the help you need.

Jim

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@burningfeetinphoenix

I have just two days ago
Just joined the discussion group

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Hello @burningfeetinphoenix, Welcome to Connect. Thank you for the private message. I thought I would respond to your private message here. We are glad you found this group also and hope it helps you by learning what others do for treatments that help fhem and sharing your own health experience. I found Connect a little over 3 years ago when searching for answers for my small fiber peripheral neuropathy and I find that I learn something new almost everyday. I posted my health story in an earlier post on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

There are a lot of members here to answer any questions you might have and share their experience with you. There is also another discussion that you may find helpful here:

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

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@somisgirl

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

Jump to this post

I am in exactly the same boat! Runner, hiker, Paleo diet, idiopathic for SFN. Started in April this year. Just diagnosed with SFN. Devistated. Ran mountains for years…20,000+ steps a day. Consideratung moving to cooler climate area. Pam

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@burningfeetinphoenix

I am in exactly the same boat! Runner, hiker, Paleo diet, idiopathic for SFN. Started in April this year. Just diagnosed with SFN. Devistated. Ran mountains for years…20,000+ steps a day. Consideratung moving to cooler climate area. Pam

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I'm so sorry for your diagnosis. It's life altering for sure but it does sound like you are very discipline and handle challenges. Positive energy sent your way. Best of luck.

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@jimhd

@somisgirl I also have idiopathic small fiber peripheral neuropathy, and the beginning of autonomic neuropathy. All five of my siblings and our father had or have it. My siblings have been able to treat it, and I don't know if any of them have the burning pain that I do. The disease seems to be different for each individual.

One thing I've learned is that it's a progressive disease, and there's not a confirmed cure, though there are many meds and other things that treat the symptoms, as @johnbishop explains so well.

I've tried every neuropathy meds and a long list of medications that sometimes help with the pain. With only a few exceptions, they either didn't have any effect on the pain, or had unacceptable side effects. Two years ago I had a Burst DR spinal cord stimulator implant, and I had significant relief. I'd forgotten how it felt to be nearly pain free. Over the two years, the Abbott tech has had to make adjustments to the controller every 3 months, because the pain will gradually worsen. Understand that this is my own experience, and that many people have a much better outcome, over a long period of time.

I'm seeing a doctor tomorrow to discuss a dorsal root ganglion stimulator implant, which targets the areas of pain more precisely. I'm not sure if I'll try it, but I'm still doing the research on it, which is pretty sparse because it's a new product. On Monday, I have an appointment with the pain specialist, and I'll be talking about it with him. I'm also going to ask him about a medication pump.

One thing that I did was have six sessions with a pain therapist, and I use some of the tools she taught me. The pain in my feet might be only a 5 or so during the day, but when I lie down to sleep, it shoots up to 8. That's when the therapist's practices help.

I still hold out hope for a non- narcotic solution. I'm trying to take as little morphine as possible, but it's the only thing that has touched the pain. Actually, a couple of meds did help. Lyrica was one, but after just a few weeks, starting at a low dose, it put me in the hospital. I was incoherent, had no memory, etc. Bummer. I tried desipramine a couple of months ago and it was helping, but I had to run to the bathroom up to 24 times a day. Not acceptable!

Read all you can, with an open mind, along with a little skepticism. There are certainly scams in abundance to beware of. But I'm confident that there's something out there that will give you the help you need.

Jim

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I read you response and was so touched by your pain. Mine is nothing like this yet but I appreciated your sharing your experience and situation. Everyone in this group is amazing. The courage they have and willingness to share has meant a lot to me. It's only been one week since my diagnosis but the Mayo Connect has been a godsend…Pam

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