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 Support Group.

@swats005

This is an old thread, but just wanted to share that I have many of these symptoms in case anyone is still following. I have non-length dependent small fiber neuropathy confirmed by skin biopsy which was below the threshold at the hip. Symptoms started 2 years ago with a tingling sensation in one ear, followed my numbness and nerve pain in one toe. 1 year ago I developed numbness throughout my hands which persists to today. 3 months ago I began experiencing diffuse fasciculations or "muscle twitching". They started instantly like someone flipped a switch and they continue to this day. Weirdly I also have a chronic cough, but only at night. I also have constantly sweaty hands and feet and frequent constipation from the small fiber neuropathy. So far the fasciculations are characterized as benign since EMG is normal, but its so scary that the other shoe will drop one day given their association with motor neuron disease. All of my bloodwork is normal, and they cant find any underlying cause, so my case is still considered idiopathic and I am receiving no treatment. I haven't found anything that helps on my own either. I have asked about Ivig but doctors say there is no basis if they cant find any markers of immune disorders in bloodwork. If anyone is still following this, please share any treatment that has been helpful for you. Thank you.

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I am currently trying a weighted blanket while I sleep. Only from the waist down. The legs and feet have benefited so far. Time will tell.

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I just ran across this post searching for answers, because like you, I can't get an explanation for the fasciculations in my legs, that's what you are having. I had peripheral neuropathy when the doctor put me on a statin and it immediately started causing vibrations in my back, I was only on them for 6 months but now I have constant vibrations in my entire body. I have 1 leg that is affected badly, feels like I'm balancing on a toothpick, it's worse without shoes, my limbs burn,constant fasciculations in my calves and occasionally in my thighs. All my MRIs ,blood work show nothing, had a nerve biopsy that determined I have small fiber neuropathy. I have had 3 EMGs done by 3 different neurologist, the first 2 show slight slowing and the 3rd said no slowing of nerve conduction.
My second EMG I was given a diagnosis of Charcot Marie tooth, which is when I started seeing the 3rd neurologist at the university hospital, who said I don't think it's that, so she sent me for a 3rd EMG that says nothing is wrong. I hate when they dismiss our symptoms because they don't fit their diagnosis. I do believe statins played a big role in what I'm dealing with, but doctors seem to dismiss the statin factor.
Back to charcot Marie tooth, I was pretty confident in that diagnosis, it explained so many issues I had experienced over a 40 year period before the neuropathy kicked it. I joined a support group for the disease and we share so many of the same symptoms, including wobbly legs.
Statins do cause neuropathy, did you have neuropathy before or after statin therapy?
Hopefully one of us can find the answer. I'm so tired of tests that prove nothing. Then the doctors blame it on anxiety.

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@raebaby

I sleep with a heating pad under my legs and it stops the leg spasms.

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I'm the opposite, ice is the only thing that calms my spasms. Too bad they start again as soon as my feet hit the ground.

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I see suggestions for the leg fasciculations, I suggest ice. Try soaking your feet in cold water. I use ice packs on my feet when its unbearable, only thing that calms these nerves.

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@jt67

I just ran across this post searching for answers, because like you, I can't get an explanation for the fasciculations in my legs, that's what you are having. I had peripheral neuropathy when the doctor put me on a statin and it immediately started causing vibrations in my back, I was only on them for 6 months but now I have constant vibrations in my entire body. I have 1 leg that is affected badly, feels like I'm balancing on a toothpick, it's worse without shoes, my limbs burn,constant fasciculations in my calves and occasionally in my thighs. All my MRIs ,blood work show nothing, had a nerve biopsy that determined I have small fiber neuropathy. I have had 3 EMGs done by 3 different neurologist, the first 2 show slight slowing and the 3rd said no slowing of nerve conduction.
My second EMG I was given a diagnosis of Charcot Marie tooth, which is when I started seeing the 3rd neurologist at the university hospital, who said I don't think it's that, so she sent me for a 3rd EMG that says nothing is wrong. I hate when they dismiss our symptoms because they don't fit their diagnosis. I do believe statins played a big role in what I'm dealing with, but doctors seem to dismiss the statin factor.
Back to charcot Marie tooth, I was pretty confident in that diagnosis, it explained so many issues I had experienced over a 40 year period before the neuropathy kicked it. I joined a support group for the disease and we share so many of the same symptoms, including wobbly legs.
Statins do cause neuropathy, did you have neuropathy before or after statin therapy?
Hopefully one of us can find the answer. I'm so tired of tests that prove nothing. Then the doctors blame it on anxiety.

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Hi @jt67, Welcome to Connect. I'm glad you found Connect. I also found Connect back in 2016 when I was searching for answers after being diagnosed with idiopathic small fiber PN. After doing my own research I also decided against taking statins to help with my cholesterol specifically because it can induce neuropathy. There is an older discussion on the topic here - Is there any connection with statin use and neuropathy?: https://connect.mayoclinic.org/discussion/is-there-any-connection-with-statin-use-and-neuropathy-i-have-had/. I also shared a post in the discussion with reference links that may be helpful if you haven't seen them. Here's the link to the post - https://connect.mayoclinic.org/comment/100010/.

I'm glad to see that you haven't given up and are still searching for answers. Have you ever heard about The Patient Revolution? - https://patientrevolution.org/

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@raebaby

I sleep with a heating pad under my legs and it stops the leg spasms.

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I do, too, except I found that it works best if the heating pad is under my lower back. The heating pad on a timer works even better than nerve pain medication in relieving the nerve pain in my feet at night. My autoimmune-mediated peripheral neuropathy was caused by the Covid vaccines, and I believe the dorsal root ganglia neurons near my spine were also inflamed. That would explain why the lower back placement of the heating pad helps so much. (I don't have any orthopedic issues.)

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Very interesting! I put it where the muscles cramp up ,but I will try it at the base of my spine. Thanks!

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Carlito

GM. This is an old post however just wondering how you’re feeling. I experienced a similar scenario as you. Thanks

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@blksheep11

Carlito

GM. This is an old post however just wondering how you’re feeling. I experienced a similar scenario as you. Thanks

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Hello @blksheep11, Welcome to Connect. I'm not sure @carlitto is still following Connect as he was last active in 2020. The good news is that other members in this discussion like @raebaby, @pacer3702, @jt67, @pfbacon and others may have some suggestions or experiences on the same symptoms to share with you.

Are you able to share a little more about your diagnosis and symptoms?

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i may have mentioned this, I bought some liquid quinine on Amazon and it stopped the cramps in my legs. My Voxxlife patches and socks stopped the pain in my feet and improved my balance.
I'm 81 and I feel happy that I overcame the neuropathy to the point where I can tromp through the airports by myself, hauling a suitcase and a largish carry on without a wheel chair.
I live alone on 22 acres that I'm able to keep up (the area around my house) with the help of my son who comes out a couple of days a week.

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