My experience with Small Fiber Neuropathy

Posted by djroberts @djroberts, Oct 9, 2018

Hi there. Thank you to all the people who support this forum.

I believe I have Small Fiber Neuropathy. It's been a struggle to get doctors to believe something is wrong. I have one now that believes me but believes but this seems to be all new information for her. I met with neurologists and they said I was fine. I passed all their normal tests and they seem to imply it was psychological. I'm still trying to get tested and get an official diagnosis. It's possible I'm wrong but given the symptoms I have it seems unlikely.

I was a drinker for years. I brewed beer and drank daily. I also have had high cholesterol for many years. The drinking certainly affected the cholesterol. A couple of years ago I started getting very sharp stabbing pains in my toes in the evening. I can't say if it was when I was drinking or not because I know these symptoms are more common at night and that's when I drank. I started to get pins and needles shortly after mostly in my feet and occasionally in my hands. I would get a stabbing pain in my thigh and foot at the same time.

A few other notes:
1. I have impaired fasting glucose in the pre-diabetic range.
2. I've had high cholesterol for many years. It's getting better with diet and exercise.
3. History of alcohol use. I've almost entirely quick alcohol. I've had a couple of drinks in that last couple of weeks but I may quit entirely.
4. I haven't found much that helps except for reducing alcohol but lately even that doesn't seem to help.
5. It's my perception that stress increases the symptoms.
6. Exercise seems to help. Even just moving around. Switching to a standing desk as well although I'm not sure.

I'm mostly just sharing to see if there's anyone who can benefit or help me. I'm doing a lot of reading right now and don't have many conclusions.

Hi Hank. Thank you for responding. I actually have all the symptoms of neuropathy and they seem to be getting worse but I went for an EMG 2 months ago and they said I didn't have neuropathy or ALS and I was quite relieved . It actually came back perfect. I automatically assumed it would be neuropathy as they literally checked for everything else(MS, Lyme disease etc) . The Dr. also said he really didn't see any sign of Neuropathy either in my EMG which quite surprised me. I have sharp nerve pain, foot cramps, burning sensation in my feet and legs, and muscle twitching . I have a history of being a big drinker (from the business I was in so it would make sense that it was alcohol neuropathy, but I no longer drink) . Also related I had a previous herniated disc in my C7 vertebrae several years ago. After I asked my Dr. about neuropathy and he said no to that as well I asked him about SFN as it is more sensory and wouldn't show up on and EMG. He wasn't really that informed about SFN at all which was a bit concerning but I told him they can determine by a skin biopsy. On a side note I am not really impressed with the many neurologist I have seen. They seem to be guessing . I know its a hard disease to diagnose but they really seem to be guessing at things and not informed about the different possibilities. . The one thing that is really scaring me is the muscle twitching . I have it all over my body and it seems to be getting worse . It started in my arm that had previously been affected by my C7 herniated disc but now I have them all over my body. It isn't constant and comes and goes. I would say the twitches are light in nature and they don't affect my sleep. I get them when I am watching TV or in a resting position,. That is why I asked about the correlation between SFN and muscle twitching . Hank one other question I could use help with is how common it it for an EMG to be wrong the first time. My Dr' s were quite confident that I had no sign of ALS but then you read on the internet of may instances where first EMG was wrong . Thank You so much for your help Hank. I am literally a nervous mess.

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@laureen8844

Hi Hank. Thank you for responding. I actually have all the symptoms of neuropathy and they seem to be getting worse but I went for an EMG 2 months ago and they said I didn't have neuropathy or ALS and I was quite relieved . It actually came back perfect. I automatically assumed it would be neuropathy as they literally checked for everything else(MS, Lyme disease etc) . The Dr. also said he really didn't see any sign of Neuropathy either in my EMG which quite surprised me. I have sharp nerve pain, foot cramps, burning sensation in my feet and legs, and muscle twitching . I have a history of being a big drinker (from the business I was in so it would make sense that it was alcohol neuropathy, but I no longer drink) . Also related I had a previous herniated disc in my C7 vertebrae several years ago. After I asked my Dr. about neuropathy and he said no to that as well I asked him about SFN as it is more sensory and wouldn't show up on and EMG. He wasn't really that informed about SFN at all which was a bit concerning but I told him they can determine by a skin biopsy. On a side note I am not really impressed with the many neurologist I have seen. They seem to be guessing . I know its a hard disease to diagnose but they really seem to be guessing at things and not informed about the different possibilities. . The one thing that is really scaring me is the muscle twitching . I have it all over my body and it seems to be getting worse . It started in my arm that had previously been affected by my C7 herniated disc but now I have them all over my body. It isn't constant and comes and goes. I would say the twitches are light in nature and they don't affect my sleep. I get them when I am watching TV or in a resting position,. That is why I asked about the correlation between SFN and muscle twitching . Hank one other question I could use help with is how common it it for an EMG to be wrong the first time. My Dr' s were quite confident that I had no sign of ALS but then you read on the internet of may instances where first EMG was wrong . Thank You so much for your help Hank. I am literally a nervous mess.

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Hello @laureen8844, I would like to add my welcome to Connect along with @jesfactsmon and other members. It's good to hear you were not diagnosed with neuropathy. A pinched or compressed nerve can also cause neuropathic pain. There is another discussion you may find helpful on Myofascial Release Therapy. @jenniferhunter may also have some thoughts on your symptoms.

Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Have you thought about getting a second opinion from a major teaching hospital or multidisciplinary hospital like Mayo Clinic where they coordinate patient care between different doctors/specialists?

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@laureen8844

Hi Hank. Thank you for responding. I actually have all the symptoms of neuropathy and they seem to be getting worse but I went for an EMG 2 months ago and they said I didn't have neuropathy or ALS and I was quite relieved . It actually came back perfect. I automatically assumed it would be neuropathy as they literally checked for everything else(MS, Lyme disease etc) . The Dr. also said he really didn't see any sign of Neuropathy either in my EMG which quite surprised me. I have sharp nerve pain, foot cramps, burning sensation in my feet and legs, and muscle twitching . I have a history of being a big drinker (from the business I was in so it would make sense that it was alcohol neuropathy, but I no longer drink) . Also related I had a previous herniated disc in my C7 vertebrae several years ago. After I asked my Dr. about neuropathy and he said no to that as well I asked him about SFN as it is more sensory and wouldn't show up on and EMG. He wasn't really that informed about SFN at all which was a bit concerning but I told him they can determine by a skin biopsy. On a side note I am not really impressed with the many neurologist I have seen. They seem to be guessing . I know its a hard disease to diagnose but they really seem to be guessing at things and not informed about the different possibilities. . The one thing that is really scaring me is the muscle twitching . I have it all over my body and it seems to be getting worse . It started in my arm that had previously been affected by my C7 herniated disc but now I have them all over my body. It isn't constant and comes and goes. I would say the twitches are light in nature and they don't affect my sleep. I get them when I am watching TV or in a resting position,. That is why I asked about the correlation between SFN and muscle twitching . Hank one other question I could use help with is how common it it for an EMG to be wrong the first time. My Dr' s were quite confident that I had no sign of ALS but then you read on the internet of may instances where first EMG was wrong . Thank You so much for your help Hank. I am literally a nervous mess.

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Hi Laureen, sorry for your issues and lack of a diagnosis. It does sound like SFN and your biopsy should confirm or deny this. I also get the muscle twitching at times when sitting and reclining but it stops after 10-15 minutes. I think this is a common symptom. I do think that many if not most neurologists are not that knowledgeable regarding neuropathy but hopefully that is slowly changing. In the meantime most of us are having to figure out how to deal with our symptoms; knowing the cause does not always change anything. Pain meds, diet, supplements, and exercise help. I wish you the best going forward and try not to worry too much until you know what is causing your issues. Helen

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Thank you so much Helen for your kind response. Would you mind if I ask are you suffering from SFN or just Neuropathy. Thank you

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@laureen8844

Hi Hank. Thank you for responding. I actually have all the symptoms of neuropathy and they seem to be getting worse but I went for an EMG 2 months ago and they said I didn't have neuropathy or ALS and I was quite relieved . It actually came back perfect. I automatically assumed it would be neuropathy as they literally checked for everything else(MS, Lyme disease etc) . The Dr. also said he really didn't see any sign of Neuropathy either in my EMG which quite surprised me. I have sharp nerve pain, foot cramps, burning sensation in my feet and legs, and muscle twitching . I have a history of being a big drinker (from the business I was in so it would make sense that it was alcohol neuropathy, but I no longer drink) . Also related I had a previous herniated disc in my C7 vertebrae several years ago. After I asked my Dr. about neuropathy and he said no to that as well I asked him about SFN as it is more sensory and wouldn't show up on and EMG. He wasn't really that informed about SFN at all which was a bit concerning but I told him they can determine by a skin biopsy. On a side note I am not really impressed with the many neurologist I have seen. They seem to be guessing . I know its a hard disease to diagnose but they really seem to be guessing at things and not informed about the different possibilities. . The one thing that is really scaring me is the muscle twitching . I have it all over my body and it seems to be getting worse . It started in my arm that had previously been affected by my C7 herniated disc but now I have them all over my body. It isn't constant and comes and goes. I would say the twitches are light in nature and they don't affect my sleep. I get them when I am watching TV or in a resting position,. That is why I asked about the correlation between SFN and muscle twitching . Hank one other question I could use help with is how common it it for an EMG to be wrong the first time. My Dr' s were quite confident that I had no sign of ALS but then you read on the internet of may instances where first EMG was wrong . Thank You so much for your help Hank. I am literally a nervous mess.

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@laureen8844
Is the twitching occurring just under the skin and is it on both sides or one side of the body? Apparently the twitching can be mistaken for ALS when it actually might be multifocal motor neuropathy. I guess a skin punch biopsy should tell you if you have sfpn. Since you said you have all the symptoms of neuropathy, can you say what are they specifically, I mean besides the twitching? Are you having much pain? Hank

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@laureen8844

Thank you so much Helen for your kind response. Would you mind if I ask are you suffering from SFN or just Neuropathy. Thank you

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Laureen, you’re very welcome! I have had SFN for 3 years. Ideopathic, probably caused by a virus, (not COVD19!🙃) Helen

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Thank You Hank . It started with pain in the heels of my feet which I occasionally get . Then sharp pain random in my lower and upper legs. The pain felt like an electric shock (which I don't get much anymore) . I now have a burning sensation on the outside of the area right below my knees in both legs. I was at Yoga today and I literally couldn't go down on my knees as the burning pain was just to much . Some numbness in my lower legs . I get what I think is muscle twitching (or pins and needles) right above both ankles. It is really hard for me to tell the difference. I started getting random twitches which I know are twitches in my right and left tricep…in my both my thighs . They are quite light and quick when I get them. I also get them in my back once in a while. The pain was never constant. At first it was more pronounced and shock like while now its more burning sensation.

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@helennicola

Laureen, you’re very welcome! I have had SFN for 3 years. Ideopathic, probably caused by a virus, (not COVD19!🙃) Helen

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Helen you are a saint . You will put my mind to rest (at least for today 🙂 ). Thank you for taking the time to respond . I was surely let you know the results . I am not scheduled to take the test until May which I was a bit confused by as well but I will let you know. Have a great Sunday .

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@laureen8844

Thank You Hank . It started with pain in the heels of my feet which I occasionally get . Then sharp pain random in my lower and upper legs. The pain felt like an electric shock (which I don't get much anymore) . I now have a burning sensation on the outside of the area right below my knees in both legs. I was at Yoga today and I literally couldn't go down on my knees as the burning pain was just to much . Some numbness in my lower legs . I get what I think is muscle twitching (or pins and needles) right above both ankles. It is really hard for me to tell the difference. I started getting random twitches which I know are twitches in my right and left tricep…in my both my thighs . They are quite light and quick when I get them. I also get them in my back once in a while. The pain was never constant. At first it was more pronounced and shock like while now its more burning sensation.

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@laureen8844
I'm no doctor but what you describe sounds like it could well be small fiber neuropathy. Especially the burning. My wife (who has neuropathy) has burning feet and she also does get sharp shooting pains in different places at different times.

One thing you mentioned at first was the thought that this might be related to previous heavy alcohol consumption. Have you been taking a quality B vitamin complex supplement, especially back when you were consuming alcohol? B vitamins are very important, especially for someone who drinks. And B vitamins are important for anyone suffering from neuropathy. If you aren't taking B supplements, it might be a good idea to start now I would think. (Avoid B6 however, bad for neuropathy).

I am glad you are getting tested in May. Will that be a skin biopsy test or nerve conduction test? Best, Hank

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@laureen8844

Hi Hank. Thank you for responding. I actually have all the symptoms of neuropathy and they seem to be getting worse but I went for an EMG 2 months ago and they said I didn't have neuropathy or ALS and I was quite relieved . It actually came back perfect. I automatically assumed it would be neuropathy as they literally checked for everything else(MS, Lyme disease etc) . The Dr. also said he really didn't see any sign of Neuropathy either in my EMG which quite surprised me. I have sharp nerve pain, foot cramps, burning sensation in my feet and legs, and muscle twitching . I have a history of being a big drinker (from the business I was in so it would make sense that it was alcohol neuropathy, but I no longer drink) . Also related I had a previous herniated disc in my C7 vertebrae several years ago. After I asked my Dr. about neuropathy and he said no to that as well I asked him about SFN as it is more sensory and wouldn't show up on and EMG. He wasn't really that informed about SFN at all which was a bit concerning but I told him they can determine by a skin biopsy. On a side note I am not really impressed with the many neurologist I have seen. They seem to be guessing . I know its a hard disease to diagnose but they really seem to be guessing at things and not informed about the different possibilities. . The one thing that is really scaring me is the muscle twitching . I have it all over my body and it seems to be getting worse . It started in my arm that had previously been affected by my C7 herniated disc but now I have them all over my body. It isn't constant and comes and goes. I would say the twitches are light in nature and they don't affect my sleep. I get them when I am watching TV or in a resting position,. That is why I asked about the correlation between SFN and muscle twitching . Hank one other question I could use help with is how common it it for an EMG to be wrong the first time. My Dr' s were quite confident that I had no sign of ALS but then you read on the internet of may instances where first EMG was wrong . Thank You so much for your help Hank. I am literally a nervous mess.

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@laureen8844 Hi Laureen. I understand your position. I was there too for 2 years while my doctors didn't understand what was wrong. I found the answer in medical literature that all of them missed. You might be on the same path which for me was caused by spinal cord compression in my neck. I had what was called "funicular pain" or referred pain which is caused by compressing the spinal cord. I had an old whiplash injury that had herniated at C5/C6 and bone spurs grew trying to stabilize it. 5 surgeons missed it and misdiagnosed me and all refused me for surgery even though all could read the MRI. One even told me to go to rehab, fix the leg pain issues I had and then come back. The problem is, there was nothing I could do to fix something caused by the disc-osteophyte complex pressing 5mm into my cervical spinal cord and he had no clue. My very first symptom of cord compression was pain in my ankle when I turned my head. I could turn that on and off with my neck position in the early stages. It progressed to where I had spontaneous muscle contractions in different places in arms and legs, and I could change my spine position and stop them which also changed where I felt pain. I had pain all over my body which was a bit different when laying down vs standing. The thing about this type of problem is it sneaks up on you gradually. Some patients don't have pain. I also had muscle loss on the back of my arms and shoulders. After 2 years it was to the stage of getting numbness in my arms and legs and if I bent my neck forward, I got an electric shock down my entire body. I had tracked the progression of my symptoms over several months on body diagrams which was good and bad. It was clear to me what was happening, but it scared a local surgeon out of helping me when he saw the extent of the issues. I came to Mayo for my 6th spine consult and had surgery which completely resolved this problem.

Prior to becoming a Mayo patient, I had just been dismissed by a local surgeon when I found the medical literature, and no doctor at that facility would help me address this with him, even doctors who had known me for several years. I had to seek help elsewhere, and I found the literature because I looked up the term when I saw it in a paper by a Mayo surgeon, so I knew I had found a doctor who would understand this problem and not dismiss me. I became his patient and had a great outcome from my surgery which changed my life. I had lost the ability to hold my arms up, and when I got the coordination back, I expressed my gratitude to him with a portrait that I painted in watercolor.

I recommend that you get a current MRI image of your spine, cervical, and also full spine to rule out problems lower down and a consult with a new spine expert. You can have an asymptomatic lumbar issue like the lumbar bulging disc I have which contributes to generating pain when the cord gets touched in 2 places at the same time. If you have cervical cord compression, it's hit or miss what part of the bundle is getting squished and that changes every time you move, so it isn't tracked on the dermatome maps of the spine. Those tell where there is compression of a specific nerve at a specific level as it exits the spinal cord. There is no test to confirm funicular pain; only that it is resolved by decompressing the spinal cord with surgery. If cord compression advances too far, the axons die causing permanent damage that shows up as a whitish area inside the spinal cord, so early intervention is best. I did not have any visible damage to the cord on my MRIs, and a lot of my muscle has come back, but not all. I still have a deficit of perhaps 10% muscle bulk that has not returned and I am 4 years post op. I'm not as strong as I used to be, and also have thoracic outlet syndrome which affects my arms by nerve compression in the neck and shoulder. It sounds like your neurologist has looked for possible nerve compressions in peripheral areas, but they may not have considered a spinal cord problem.

I began my relationship with my Mayo surgeon with a request for an appointment, copies of the medical literature I found, and a letter that explained why I thought my case could be like those I found. Make sure you pose that as a question instead of diagnosing yourself. No surgeon would like that, but when you ask, could I possibly have funicular pain like this case in literature?, they have to consider it. If the doctor doesn't understand about funicular pain, move on until you find one who does. I would recommend Mayo. I did not find the level of expertise needed for my case anywhere else. My Mayo surgeon, Dr. Jeremy Fogelson, was not only intelligent, he was kind and compassionate. I had talked to enough surgeons and read enough literature at that point to know I was in front of someone who was a real expert and respected in his field with the knowledge and interest in taking complex cases that others had refused. Let me know if I can help further. If you can come to Mayo, you will be in expert hands and I highly recommend my surgeon. Here is my patient story and the medical literature that brought me to Mayo.
https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Excerpts from "Cervical cord compression presenting with sciatica-like leg pain" from the European Spine Journal
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
"Funicular leg pain is a rare presentation of cervical cord compression."

"Leg pain or sciatica is a rare ‘false localizing’ presentation of cervical cord compression and there has been only a few cases described in literature [1–5]. The term sciatica has often been associated with disorders of the lumbar spine and pelvis, and we often tend to overlook other parts of the spine in the search for its cause. We report two cases of cervical cord compression, which presented with sciatica-like leg pain. Each case is unique and different from one another in their presentation and concurrent spinal lesions. We hope that the discussion of these cases and the accompanying literature review will make us more aware of this uncommon presentation of leg pain in cervical cord compression."

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@jesfactsmon

@laureen8844
Is the twitching occurring just under the skin and is it on both sides or one side of the body? Apparently the twitching can be mistaken for ALS when it actually might be multifocal motor neuropathy. I guess a skin punch biopsy should tell you if you have sfpn. Since you said you have all the symptoms of neuropathy, can you say what are they specifically, I mean besides the twitching? Are you having much pain? Hank

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Hank, I’ve been dx with peripheral neuropathy. It’s much worse in my right leg than my left. The doctor told me it couldn’t be. It would be the same in both. I quit going to him. My symptoms are SEVERE burning in legs and feet. Often weakness also. I’ve tried taking the meds and had terrible reactions. Do you have any suggestions what I should do now? I’m 74 and don’t know how much longer I can stand the pain. I do see a pain specialist and take pain pills. Thank you for any comments you have for me.

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@momalin

Hank, I’ve been dx with peripheral neuropathy. It’s much worse in my right leg than my left. The doctor told me it couldn’t be. It would be the same in both. I quit going to him. My symptoms are SEVERE burning in legs and feet. Often weakness also. I’ve tried taking the meds and had terrible reactions. Do you have any suggestions what I should do now? I’m 74 and don’t know how much longer I can stand the pain. I do see a pain specialist and take pain pills. Thank you for any comments you have for me.

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@momalin Have you tried physical therapy? It sounds like you could have a pinched nerve somewhere. My physical therapist also does myofascial release which stretches fascia. When things are overly tight, it can compress nerves and the body is not properly aligned so when nerves pass through some small spaces they can get stretched or squished. If it's a physical problem causing the pain, physical therapy may be able to help. If the cause is nerves dying because of aging, physical therapy likely wouldn't help. There are also problems that happen from bad pelvis alignment that cause sciatic pain that are not spine related. Really tight hip flexor muscles because of sitting too much can contributes to sciatic pain and pelvic alignment issues. Physical therapy might be able to help that as well. If you can move better and build strength with better alignment, that can go a long way to reducing pain if you find the right therapist. Here is our discussion about MFR myofascial release.
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Here is a provider finder.
http://mfrtherapists.com/
I hope that information gives you a place to start, and none of that involves pain medications.

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