Small Fiber Neuropathy?

Posted by elsa @elsa, Wed, Jan 23 5:07pm

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

@elsa Hi Elsa, I know that you had a microdiscectomy, but that issue can reoccur if you still have a damaged disc in place because a microdiscetomy just removes the part that was extruded. My experience with a spine problem also had expanding pain. I think you should investigate the possibility that your pain may be due to spine related changes as it has been ten years since your spine surgery. I don't know how MS would affect this. Because you describe that the symptoms change from standing to sitting and laying down, it sounds spine related to me. Your spinal cord moves and changes in these positions, and stretches when bent like when you sit, and when you lay down, the curves in your back can straighten out a bit putting on pressure in different places than when standing. You could also have some instability with movement of vertebrae slipping over another that change between laying and standing and sitting. I had spine surgery with Dr. Jeremy Fogelson in Rochester and he is excellent. Of course other specialists will have to weigh in on if they think this this is disease related or a physical spine or nerve compression issue. Here are 2 stories about Dr. Fogelson, mine and another. If you come to Mayo, all that can be accessed. Let me know if I can answer any questions. I was very impressed with my care and excellent recovery and Dr. Fogelson is a compassionate surgeon.

https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/

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Hi Elsa @elsa, I have idiopathic small fiber peripheral neuropathy. I think any of the neurologists at Mayo Clinic Rochester would be good. I was diagnosed by Dr. Nathan Young. I have no medical training or back so don't know if the symptoms sound like small fiber neuropathy but it could be. There is another discussion you may want to read through that sounds similar to your symptoms.

Groups > Brain & Nervous System > Burning sensations on skin pressure points, i.e. elbows, forearms, hands buttocks, feet.
https://connect.mayoclinic.org/discussion/burning-sensations-on-skin-pressure-points-i-e-elbows-forearms-hands-buttocks-feet/

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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Thanks, John. The video was enlightening. I called Mayo Neurology this morning and requested an appointment. Was told they'd get back to me in a few days after the doctor(s) review my description. Keep your fingers crossed that they agree to see me.

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@jenniferhunter

@elsa Hi Elsa, I know that you had a microdiscectomy, but that issue can reoccur if you still have a damaged disc in place because a microdiscetomy just removes the part that was extruded. My experience with a spine problem also had expanding pain. I think you should investigate the possibility that your pain may be due to spine related changes as it has been ten years since your spine surgery. I don't know how MS would affect this. Because you describe that the symptoms change from standing to sitting and laying down, it sounds spine related to me. Your spinal cord moves and changes in these positions, and stretches when bent like when you sit, and when you lay down, the curves in your back can straighten out a bit putting on pressure in different places than when standing. You could also have some instability with movement of vertebrae slipping over another that change between laying and standing and sitting. I had spine surgery with Dr. Jeremy Fogelson in Rochester and he is excellent. Of course other specialists will have to weigh in on if they think this this is disease related or a physical spine or nerve compression issue. Here are 2 stories about Dr. Fogelson, mine and another. If you come to Mayo, all that can be accessed. Let me know if I can answer any questions. I was very impressed with my care and excellent recovery and Dr. Fogelson is a compassionate surgeon.

https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/

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Thanks for your reply, Jennifer! I called Mayo Neurology today and requested an appointment. Hopefully, they'll agree to see me. I tend to agree with your speculation that there may be changes in my spine. One thing I neglected to mention in my initial post is that I've also developed a crooked spine. My PT took 2 photos of my mid-spine: the one in which I'm standing the way I normally do, is crooked. Then, if I shift my right hip over to the left, it straightens my spine. This is either quite new or it's been getting worse. I appreciate your recommendation of Dr. Fogelson, should surgery be recommended in the future. I'm glad your surgery went well and you're feeling better as a result.

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@elsa

Thanks for your reply, Jennifer! I called Mayo Neurology today and requested an appointment. Hopefully, they'll agree to see me. I tend to agree with your speculation that there may be changes in my spine. One thing I neglected to mention in my initial post is that I've also developed a crooked spine. My PT took 2 photos of my mid-spine: the one in which I'm standing the way I normally do, is crooked. Then, if I shift my right hip over to the left, it straightens my spine. This is either quite new or it's been getting worse. I appreciate your recommendation of Dr. Fogelson, should surgery be recommended in the future. I'm glad your surgery went well and you're feeling better as a result.

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@elsa You could also have your pelvis out of alignment which also can cause leg pain symptoms. That has happened to me and physical therapy gets it realigned. Those same symptoms also overlap with spine issues where lumbar meets the sacrum. Dr. Fogelson is a spinal deformity expert and I found a Mayo Clinic minute video of him talking about scoliosis that you can search for. I wanted to pass along some more information because Dr. Fogelson had me see a neurologist first that he chose who is Dr. Bartleson. Here is a video I found of him taking about cervical stenosis which is what I had. I think they work together a lot. Dr. Bartleson ordered nerve tests and blood work that I had done prior to meeting Dr. Fogelson and an MRI. You should send those photos in with your request for an appointment along with any recent imaging. There can also be issues with the SI joints, and Mayo has an SI joint clinic. I don't have any experience with that, but I've had mine shift and physical therapy helped them. Thank you, I am doing great, and my spine surgery fixed all the pain I had from the stenosis. I am still working on rebuilding muscle that I lost and had a physical therapy workout today and I'm achy from that. I also have to stretch and strengthen in therapy for my thoracic outlet syndrome, and building core strength is recommended to keep the spine supported.
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/videos/cervical-spinal-stenosis/vid-20433375

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Jennifer, thank you VERY much for this additional information. I know that my SI joint is often out of alignment because I see an excellent chiropractor who often puts the SI back in place. It's very helpful to learn about Dr. Bartleson and about Mayo's SI joint clinic. I think I'll call Mayo's Neurology Clinic back tomorrow and offer to send them my most recent spine MRIs which were done in September, 2018. I'm very glad your surgery fixed your pain and that you're regaining muscle & core strength. I work out 3 to 4x weekly, using machines and free weights to strengthen my upper body and my core. I also go to the warm water pool where I do exercises to strengthen my legs and core. I really appreciate your remarks. I'll let you know if I get my Mayo appointment and how it goes (assuming I get in). Warm Regards!
–Elsa

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@johnbishop

Hi Elsa @elsa, I have idiopathic small fiber peripheral neuropathy. I think any of the neurologists at Mayo Clinic Rochester would be good. I was diagnosed by Dr. Nathan Young. I have no medical training or back so don't know if the symptoms sound like small fiber neuropathy but it could be. There is another discussion you may want to read through that sounds similar to your symptoms.

Groups > Brain & Nervous System > Burning sensations on skin pressure points, i.e. elbows, forearms, hands buttocks, feet.
https://connect.mayoclinic.org/discussion/burning-sensations-on-skin-pressure-points-i-e-elbows-forearms-hands-buttocks-feet/

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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Some of us have been at this for awhile, and know most of this information, but for the newcomers, it might be useful: https://www.webmd.com/pain-management/ss/slideshow-neuropathy?ecd=wnl_cbp_012619&ctr=wnl-cbp-012619_nsl-LeadModule_cta&mb=c5Z0JE7XLMx9bKjb5oUBKeHnVev1imbCaR5NAlFXatM%3d
Also, with small fiber neuropathy, nerve condition studies usually are normal.

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@johnbishop

Hi Elsa @elsa, I have idiopathic small fiber peripheral neuropathy. I think any of the neurologists at Mayo Clinic Rochester would be good. I was diagnosed by Dr. Nathan Young. I have no medical training or back so don't know if the symptoms sound like small fiber neuropathy but it could be. There is another discussion you may want to read through that sounds similar to your symptoms.

Groups > Brain & Nervous System > Burning sensations on skin pressure points, i.e. elbows, forearms, hands buttocks, feet.
https://connect.mayoclinic.org/discussion/burning-sensations-on-skin-pressure-points-i-e-elbows-forearms-hands-buttocks-feet/

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.

Jump to this post

I've been biopsied with a firm diagnosis of idiopathic small fiber neuropathy but have no pain whatsoever. I just have numbness which is getting worse and spreading. Has anyone at all been diagnosed with ANA and Lupus without any pain? I'll be starting IVIG very soon and any tips would greatly appreciated.
Thanks, Rose

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@geegie

I've been biopsied with a firm diagnosis of idiopathic small fiber neuropathy but have no pain whatsoever. I just have numbness which is getting worse and spreading. Has anyone at all been diagnosed with ANA and Lupus without any pain? I'll be starting IVIG very soon and any tips would greatly appreciated.
Thanks, Rose

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Hi Rose @geegie, I did a search and found another discussion that mentions Lupus and ANA levels. It might be a good place to post a question. I'm also tagging @toomanyoars, @djanthony, and @anniemaggie who may be able to share some information or tips with you.

Groups > Autoimmune Diseases > Lupus or not Lupus?
https://connect.mayoclinic.org/discussion/lupus-not-lupus-lupus-not-lupus/

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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.

Liked by Jennifer Hunter

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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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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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