Does Small Fiber Neuropathy also cause muscle spasms?

Posted by carlitto @carlitto, Nov 2, 2018

Hello, my first post here. The question I have is, "Does Small Fiber Neuropathy also cause muscle spasms?" Sorry in advance for a long explanation. I didn’t want to leave anything out. Here's my background. I am a Latino male. age 49. I use to get a needle like jab in my feet maybe once every few months. Never thought much of it. My mother’s side has many people with diabetes, which my older sister now has. I thought it might be pre-diabetic signs. In 2016, I had a great deal of stress from a job, and then starting a new job and also moving to a new state and finally my house. My manager announced a business trip to China. Quick tangent: I lived in Asia for 14 years and at the end, I developed a fear of flight. And so, this trip was the first plane ride since coming home. To say I had anxiety was an understatement. As the the trip approached, I took up restorative Yoga to relax. I felt my muscles weak and shaking. At this time, I complained about muscle aches to my doctor and he removed me from a statin I was taking for Cholesterol. I understand statins can impact muscles. He thought I had ‘developed’ an intolerance to statin. Some people that came off statins have mentioned muscle problems for several years. (So I read). The trip went off without issue and I was very excited I managed. When I got back though.. I had a lot of pain in my legs. My doctor said to me that it might have been pent up anxiety/stress that was delayed. After a short time back, I noticed my feet started to tingle. At first the right foot, then both. My left toe was very stiff in the morning. I started to document this symptom. Not much longer, I started o feel more tingling in my calves. I then started to get little tiny spasms. I call them spasms, but I don’t really see the muscles moving. I went to Neurologist (#1) and they examined me in the room and said I showed no signs. But they did a EMG test and the result was unremarkable. Months went by and the spasms moved to my upper body. When I took a shower, some parts of my body felt like I had walked in from a snowy day and put my skin under hot water. Sometimes I felt insects on my body but there were none. I changed my Neurologist (#2). The new neurologist said I seem to have neuropathy in my legs. She put me on Gabapentin. I started to get a lot of anxiety because I’ve never really been sick outside of a torn ACL from sports. I lead a healthy life, though don’t exercise anymore due to the ACL. I drink very very little and never smoked. I don’t eat a lot of meat or fried food. As the months went by the sensations grew stronger. I went to Rheumatologist (#1). They said my feet pain were due to flat feet, and see a Podiatrist. So off I went to Podiatrist who sold me OTC shoe inserts. Yes, I had flat feet and wore orthopedics in my 20s, but flat feet couldn’t explain the rest of my symptoms. So I went to Rheumatologist (#2) who I use to see back in my home state. After much bloodworm and office visits, she felt I had Seronegative Spondyloarthritis. She felt that would explain my non-neuropathy symptoms. She sent me to a Rheumatologist (#3) that specializes in muscle diseases. He looked over my record and said I don’t have any disease related to his field of Rheumatism. He said I might have anxiety causing this, a nutritional imbalance or fibromyalgia. My Neurologist was a general one and said I should go to one that specializes in muscle diseases. So she sent me to a university hospital to see Neurologist (#3). After examination, she felt I didn’t have any issues. She did some blood work and nothing showed up. And each few months I could feel my body pick up a new symptom/or current ones spreading. I related the EMG and it was unremarkable. I then has an autonomic test with skin biopsy. This test showed I had Small Fiber Neuropathy. She increased my Gabapentin dose. Due to the distance, it was difficult to go to my Rheumatologist so last week, I went to the same university to see a Rheumatologist (#4). He said I did not have Seronegative Spondyloarthritis and that Rheumatologist (#3) was completely wrong. He concurred with Rheumatologist (#2) that I did not have any inflammatory disease. He said it was 100% neurological.

I should mention I picked up a chronic cough about 3 years ago. The pulmonologist had me go through various tests and hasn’t found anything wrong. During the past year, I had two cases of bronchatis. I was treated with Prednisone. It cleared up my cough and heavy chest feeling but…surprise..I also noticed that all my symptoms were greatly reduced. I thought it a fluke. Then a few months mater I got bronchitis again and so back on Prednisone I went. Again, my symptoms nearly went away. It was bliss! I mention this to my Neurologist and she wasn’t sure what to think. She said that my Small Fiber Neuropathy is the cause of my tingling, burning and stabbing pain, but it doesn’t explain the spasms. Thus, the reason for my original question. My understanding of neuropathy is that for some people, there is no underlining cause, and for others, there is an underlining cause that has created it, such as diabetes. With my chronic cough, and responding to steroids, along with the Small Fiber Neuropathy, my wife was wondering if I might have Sarcoidosis. But the pulmonologist doesn’t think I do.

So that brings me to how I feel recently. Over the course of a few months, I went from 186 to 167 pounds. Only change to my diet was to avoid sugar in my coffee. Not much else change. I just did a full abdominal ultrasound and all was fine. I did an endoscopy and colonoscopy last year and they were fine. My blood pressure is great. If you look at me, you’d never know. A few weeks ago I started to feel burning in my thigh muscles and calves. This is new. My legs feel weak and I really feel like the weight lose made my leg muscles smaller while my belly has the same size.

I am about to make a huge life changing decision in switching jobs. The new job is a dream job but with more pressure. My current job is much less pressure but not as satisfying. I actually need to decide next week! I’m at a loss on what to do.. My health isn’t getting better and so I worry if a job with high stress will be the best thing. I don’t know if I should believe all my symptoms are 100% neurological. Perhaps all my anxiety has manifested into physical pain? Based on my history, are there any specialist that is recommended or potential causes besides the Small Fiber Neuropathy? Thank you so so much for listening.

Carlos

Interested in more discussions like this? Go to the Neuropathy group.

@mm3952

Anyone get muscle twitching – both local and widespread – as part of diagnosed small fiber neuropathy?

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I have had nervous legs (RLS) for years and fibro myalgia for years. I just was diagnosed with neuropathy in my feet! Yes I do have twitching in my feet from my nerves sending shooting pain through my toes and feet all the time.

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@mm3952

Anyone get muscle twitching – both local and widespread – as part of diagnosed small fiber neuropathy?

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Hello @mm3952, @cinbo, and @jana59, welcome to Mayo Clinic Connect. I'm tagging our moderator @lisalucier to see if we should move this discussion and combine it with an existing discussion here on Connect where other members are discussing the same condition. In the mean time you might want to read through the discussion and meet other members posting there.

Groups > Neuropathy > Does Small Fiber Neuropathy also cause muscle spasms?
https://connect.mayoclinic.org/discussion/does-small-fiber-neuropathy-also-cause-muscle-spasms/

John

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Hi Carlos, @carlitto
I share many of your symptoms and have spent years searching for an accurate diagnosis that would lead me to treatment. My best response to you or anyone for that matter who has been diagnosed with SFPN (small fiber poly neuropathy) is to read the research and presentations of Dr. Anne Oaklander (Mass, General Hospital, Nerve Unit). She has discovered a potential treatment for people with “apparently autoimmune” SFPN. This may be what you have, considering your response to prednisone (which may have decreased the inflammation related to an autoimmune condition that could be causing/related to your SFPN). In addition, I suggest that you research and perhaps contact Dr. David Systrom (Brigham and Women’s Hospital, Boston). He has worked with Dr. Oaklander and approaches SFPN from the pulmonary/cardiac angle. He has also had patients respond well to his spefic rx protocols. Best wishes to you for finding answers and relief. 💫

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@joey6: @carlitto Just listened to Dr. Oaklander. Thank you for the reference. There is research going on that will lead to effective treatment methodologies. First we have to be able to distinguish the causes and the differences between the results of treatment options. Only then will “idiopathic” be an unacceptable diagnosis. We do have to hurry though so that all of us can benefit from a better quality of life, or at least one without suffering from SFN pain and discomfort. Be safe and secure today. Chris

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Interesting topic … I get muscle cramps in my legs. My neurologist diagnosed Restless Leg Syndrome when she diagnosed Axonal Sensory Neuropathy (advanced). She has RLS too, she takes 150 mg Lyrica twice a day. The pharmacist who filled my prescription also has RLS and takes 150 mg Lyrica twice a day. I also go running and sometimes forget to stretch afterward and I wake up with muscle cramps during the night. I like diet coke (which is dehydrating) and sometimes I don't drink enough water and have muscle cramps from dehydration during the night. When I have pain in my legs, I have to give it some thought to figure out what the probably cause is and what the best medicine is. I don't know if that will help anyone since mine is cramps, not spasms … Peggy

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@pfbacon

Interesting topic … I get muscle cramps in my legs. My neurologist diagnosed Restless Leg Syndrome when she diagnosed Axonal Sensory Neuropathy (advanced). She has RLS too, she takes 150 mg Lyrica twice a day. The pharmacist who filled my prescription also has RLS and takes 150 mg Lyrica twice a day. I also go running and sometimes forget to stretch afterward and I wake up with muscle cramps during the night. I like diet coke (which is dehydrating) and sometimes I don't drink enough water and have muscle cramps from dehydration during the night. When I have pain in my legs, I have to give it some thought to figure out what the probably cause is and what the best medicine is. I don't know if that will help anyone since mine is cramps, not spasms … Peggy

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Hi pfbacon,

Have you tried extra potassium tablets and magnesium capsules, taken at night? Long ago (it seems) when I was in the early stages of what became profound PN (Axonal and Peroneal and Tibial nerves are all unresponsive on EMG – ie 'dead'), I had horrible muscle cramps in my calves.

I was doing that awful 'dance' at night…jumping out of bed and stretching my calves to stop the cramp. Sometimes many times a night.

That's when I started taking potassium and magnesium at night. I thought they helped. How much, I'm not sure.

I know it won't be any comfort, but once my PN was profound, the cramps stopped. Of course by then I was completely disabled, and now I wear braces and walk with a walker.

For me, my PN is continuing to affect more and more organ/systems of my body. This is because my PN is caused by my Immune System, which attacks my own body's nervous system. So it is busily at work. The latest system under attack is my gastrointestinal system.

I think I am in the beginning stage of ocular neuropathy. This is from an article, Ocular neuropathy in peripheral neuropathies.

I can't include the link because I'm still new to this forum.

Ocular movements and coordination require complex and integrated functions of somatic and autonomic nervous systems. Neurological disorders affecting these nervous systems may cause ocular dysfunction involving extraocular muscles and pupils. In this article, the prevalence, clinical presentations, and management of ocular neuropathy related to certain peripheral neuropathies…

Regards, ElaineD

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@jana59

I have had nervous legs (RLS) for years and fibro myalgia for years. I just was diagnosed with neuropathy in my feet! Yes I do have twitching in my feet from my nerves sending shooting pain through my toes and feet all the time.

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Hi, @jana59 – I'd also suggest you might want to check out these discussions:

– On restless legs syndrome https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5

– On fibromyalgia https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/

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@elained

Hi pfbacon,

Have you tried extra potassium tablets and magnesium capsules, taken at night? Long ago (it seems) when I was in the early stages of what became profound PN (Axonal and Peroneal and Tibial nerves are all unresponsive on EMG – ie 'dead'), I had horrible muscle cramps in my calves.

I was doing that awful 'dance' at night…jumping out of bed and stretching my calves to stop the cramp. Sometimes many times a night.

That's when I started taking potassium and magnesium at night. I thought they helped. How much, I'm not sure.

I know it won't be any comfort, but once my PN was profound, the cramps stopped. Of course by then I was completely disabled, and now I wear braces and walk with a walker.

For me, my PN is continuing to affect more and more organ/systems of my body. This is because my PN is caused by my Immune System, which attacks my own body's nervous system. So it is busily at work. The latest system under attack is my gastrointestinal system.

I think I am in the beginning stage of ocular neuropathy. This is from an article, Ocular neuropathy in peripheral neuropathies.

I can't include the link because I'm still new to this forum.

Ocular movements and coordination require complex and integrated functions of somatic and autonomic nervous systems. Neurological disorders affecting these nervous systems may cause ocular dysfunction involving extraocular muscles and pupils. In this article, the prevalence, clinical presentations, and management of ocular neuropathy related to certain peripheral neuropathies…

Regards, ElaineD

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Hi, Can you tell me if you have pain, numbness or both. Also, what treatments and meds you've you undergone or taken? Thanks, Rose

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@joey6

Hi Carlos, @carlitto
I share many of your symptoms and have spent years searching for an accurate diagnosis that would lead me to treatment. My best response to you or anyone for that matter who has been diagnosed with SFPN (small fiber poly neuropathy) is to read the research and presentations of Dr. Anne Oaklander (Mass, General Hospital, Nerve Unit). She has discovered a potential treatment for people with “apparently autoimmune” SFPN. This may be what you have, considering your response to prednisone (which may have decreased the inflammation related to an autoimmune condition that could be causing/related to your SFPN). In addition, I suggest that you research and perhaps contact Dr. David Systrom (Brigham and Women’s Hospital, Boston). He has worked with Dr. Oaklander and approaches SFPN from the pulmonary/cardiac angle. He has also had patients respond well to his spefic rx protocols. Best wishes to you for finding answers and relief. 💫

Jump to this post

Wonderful information! Thanks!
Rose

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Carlos
Your case sounds a lot like mine. I went through numerous tests etc. I even went to a guru who tested all my blood to check for imbalances. I did have a couple things off like low vitamin b but nothing that stuck out. I too had was very stressed before all my symptoms started. I was on a statin for high cholesterol for years before. He had me on lovastatin which was a old school one. I too told him to take me off to see if that was it , nothing changed after 6 months. I now have pain in both legs , hamstrings always seem super tight. I get burning in forearms. I also get twitching all over now. It can happen for like 3 secs in my arm then hour later in my leg. I had multiple smgs which were all fine. The twitching was making me nervous as was it affecting more than sensory ??? The doctors don’t see worried about it though , just part of the disease ? I don’t get like Charlie horse spasms if that’s what your referring to. I had a good run for like 8 months on a bunch of supplements and was on Effexor for the anxiety etc dealing with the grind of this neuropathy. The doctor lowered and tried to taper off the Effexor as I was doing great but after a month on lower dose I had a bad flare up now so I went back to taking the Effexor. Maybe it was working on the pain ? I go back to neurologist soon maybe I need to be on medication dedicated to the nerve pain

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Effexor is an anti-depressant and it has the side benefit of raising T-cells. That's what my doctors told me when I had to take it for awhile after my body was depleted by a foreign virus — it made me gain weight and I found out that it's notorious for making people gain weight. When I was able to stop taking it I lost the extra weight.
Of course, I tried all the over the counter and holistic remedies for muscle cramps at night – potassium and magnesium made them worse. My neurologist has me taking Ferrous sulfate – a timed-release tablet every night – for the restless leg syndrome/muscle cramps. She has RLS also and said that her cramps have lessened perceptibly since she started taking the Ferrous Sulfate.

Thank you, everyone, for your input and support. Peggy

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Hey Carlos,
I was reading your post and your symptoms and order of events seem very similar to what I have experienced the last few months…all the way down to all this starting after taking up meditation. Did your issues resolve?

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