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

@somisgirl

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

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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.

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@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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@albiet

I’m in a bad place as this is confusing me. 10 years ago I was told I had SFN and had tinglings . I also have herniations from a car accident in 2004 throughout my back but they haven’t really bothered me for years. Been feeling decent for years. Last year I started to have weird sensations in my right arm that came and went. It kept getting worse and my legs started buzzing. Now almost a year later most of my body feels buzzing or vibrations . My skin or muscles feel like they are pulling/ tight. And for the last few months my teeth have been chattering. Very confused on what drs to see. Does this sound familiar to anybody and what have you done.

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Hi @albiet, I'm sorry to hear you are in a bad place. Neuropathy and it's sypmtoms can be confusing and cause a lot of anxiety along with the pain. There is another discussion with a similar name where your questions will have more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where it will receive more visibility.

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

Have you discussed your latest symptoms with your doctor? I'm wondering if the hernations you mentioned from the car accident may be causing nerve compression?

There is another discussion that you may find helpful
> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@albiet

I’m in a bad place as this is confusing me. 10 years ago I was told I had SFN and had tinglings . I also have herniations from a car accident in 2004 throughout my back but they haven’t really bothered me for years. Been feeling decent for years. Last year I started to have weird sensations in my right arm that came and went. It kept getting worse and my legs started buzzing. Now almost a year later most of my body feels buzzing or vibrations . My skin or muscles feel like they are pulling/ tight. And for the last few months my teeth have been chattering. Very confused on what drs to see. Does this sound familiar to anybody and what have you done.

Jump to this post

I saw the neuro who 10 years earlier tested me for SFN . I saw her 3 times – last oct, nov and February 2019. She took neck mri and another test that stuck needles in my leg and I did PT . Nothing helped and things get worse . She told me very coldly nothing She could do, not even recommend a internist or anyone else to start with.
I ended up seeing 2 other neuros, the first was a dr that does neuropathy and he took some tests and then asked me for a copy of the SFN test from 10 years earlier. None of his tests showed anything and said if I want some Neurontin or lyrics he could do that. In March Then I saw also 10 years prior and she took a brain mri and thoracic, but never looked at, just the memos. It did not show ms legions but thought I should go to an ms dr.
I’m basically sitting with an appointment for an ms dr on Tuesday but thinking of canceling since I’m not going back to the dr that recommended going to him. Also I’m concerned as he is in the same practice as the neuropathy dr. I’m totally confused as this continues nonstop. Help.

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@albiet

I saw the neuro who 10 years earlier tested me for SFN . I saw her 3 times – last oct, nov and February 2019. She took neck mri and another test that stuck needles in my leg and I did PT . Nothing helped and things get worse . She told me very coldly nothing She could do, not even recommend a internist or anyone else to start with.
I ended up seeing 2 other neuros, the first was a dr that does neuropathy and he took some tests and then asked me for a copy of the SFN test from 10 years earlier. None of his tests showed anything and said if I want some Neurontin or lyrics he could do that. In March Then I saw also 10 years prior and she took a brain mri and thoracic, but never looked at, just the memos. It did not show ms legions but thought I should go to an ms dr.
I’m basically sitting with an appointment for an ms dr on Tuesday but thinking of canceling since I’m not going back to the dr that recommended going to him. Also I’m concerned as he is in the same practice as the neuropathy dr. I’m totally confused as this continues nonstop. Help.

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One other thing, is there anyone here from nyc. If so please lmk and pm today. Thank you

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I’m in a bad place as this is confusing me. 10 years ago I was told I had SFN and had tinglings . I also have herniations from a car accident in 2004 throughout my back but they haven’t really bothered me for years. Been feeling decent for years. Last year I started to have weird sensations in my right arm that came and went. It kept getting worse and my legs started buzzing. Now almost a year later most of my body feels buzzing or vibrations . My skin or muscles feel like they are pulling/ tight. And for the last few months my teeth have been chattering. Very confused on what drs to see. Does this sound familiar to anybody and what have you done.

REPLY

Hi @albiet you may have noticed I moved your post to this existing discussion on Small Fiber Neuropathy per the suggestion of @johnbishop so that your post can be seen by more people with similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

As you said, it sounds so confusing to be in this situation. @burningfeetphoenix @rwinney and @somisgirl may be able to share their experience and answer your questions.

You mentioned you won't go to the other doctors you have seen so far. Are their other neurologists in the area you could go see?

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im in nyc so there is a wide range of drs. the problem is finding a good one that i can explain this to without sounding like a nut. i originally went back in 18 and in early this year to the dr who did the test 10 years ago.basically i had to beg to do anything. she basically was cold and unhelping so i dont think if i see her again, 6 months later , anything will happen positively. does anyone have nyc reccomendations? i have no idea if its the sfn, herniations or something else.
some questions for people with sfn:
1 – do you ever get retested for sfn , any emgs , any immune diseases, muscle diseses?? do you only see a neuro or do you see another type of dr (autoimmunine disease specialist
2- any drs you reccomend in nyc?

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@albiet

im in nyc so there is a wide range of drs. the problem is finding a good one that i can explain this to without sounding like a nut. i originally went back in 18 and in early this year to the dr who did the test 10 years ago.basically i had to beg to do anything. she basically was cold and unhelping so i dont think if i see her again, 6 months later , anything will happen positively. does anyone have nyc reccomendations? i have no idea if its the sfn, herniations or something else.
some questions for people with sfn:
1 – do you ever get retested for sfn , any emgs , any immune diseases, muscle diseses?? do you only see a neuro or do you see another type of dr (autoimmunine disease specialist
2- any drs you reccomend in nyc?

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@albiet Do you have a good primary care physician? If so, work with her/him about ordering this extensive list of tests: https://neuropathycommons.org/neuropathy/tests-causes-neuropathy

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@albiet

im in nyc so there is a wide range of drs. the problem is finding a good one that i can explain this to without sounding like a nut. i originally went back in 18 and in early this year to the dr who did the test 10 years ago.basically i had to beg to do anything. she basically was cold and unhelping so i dont think if i see her again, 6 months later , anything will happen positively. does anyone have nyc reccomendations? i have no idea if its the sfn, herniations or something else.
some questions for people with sfn:
1 – do you ever get retested for sfn , any emgs , any immune diseases, muscle diseses?? do you only see a neuro or do you see another type of dr (autoimmunine disease specialist
2- any drs you reccomend in nyc?

Jump to this post

@albiet

Have you looked at any University hospital? I went to the one in Portland, OR, because my neurologist said they could do tests that are only done there.
I live in central Oregon, about a 3 hour drive for me.

Jim

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@steeldove

@albiet Do you have a good primary care physician? If so, work with her/him about ordering this extensive list of tests: https://neuropathycommons.org/neuropathy/tests-causes-neuropathy

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Unfortunately I do not . Again would love anyone in nyc to recommend

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