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

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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. 💫

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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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Hi @kattypack -- welcome to Connect. You mentioned that your symptoms and order of events were similar to that of @carlitto. Just wondering if you saw my earlier response to his post in this discussion here: https://connect.mayoclinic.org/discussion/does-small-fiber-neuropathy-also-cause-muscle-spasms/?pg=1#comment-240834.

Is your current treatment providing any relief? Are you able to share a little more about your diagnosis?

John

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Your story of how your condition has progressed is a familiar one to many of us.. We know something is going astray with our bodies, but can't get a true diagnosis until it's so much worse. My own seems to have begun with those terrible tight sore muscles that were finally diagnosed as Fibromyalgia about 40 years ago.. then moved on to Erythromelalgia, and next Neuropathy.. Now the Neuropathy has moved half way up my calf.. My life has changed from being a strong active woman to having to stay off my feet because of the hot burning feet when I'm on them even a little bit in my home.. I have seen many doctors, who have referred me to others, and none of them have found the source of troubles.. Nobody else in my family has had the same kinds of issues, altho I do know that I have autoimmune issues.. At 76 years old now, my health issues just don't matter to anyone but me.. Oh well.... I still love life...

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Hi everyone. I just joined and was recently diagnosed with SFN earlier this week, after struggling with many difficult symptoms for over 18 months. The main question two questions I have are 1) does anyone suffer from SFN affecting their cranial nerves? I’ve had burning in my right ear, right side of my tongue and throat since this all started fall of 2017. 2) does SFN cause muscle twitching for anyone?

I have follow up tests next week as my neurologist continue to try to pinpoint the cause of the SFN. They have been skeptical of my symptoms up to now, since they couldn’t find a cause until the recent punch biopsy. I’m on lyrica but it doesn’t offer enough help, especially for the burning pain in my face and mouth. Any treatment suggestions would be incredible. Thank for your time!

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@richj8

Hi everyone. I just joined and was recently diagnosed with SFN earlier this week, after struggling with many difficult symptoms for over 18 months. The main question two questions I have are 1) does anyone suffer from SFN affecting their cranial nerves? I’ve had burning in my right ear, right side of my tongue and throat since this all started fall of 2017. 2) does SFN cause muscle twitching for anyone?

I have follow up tests next week as my neurologist continue to try to pinpoint the cause of the SFN. They have been skeptical of my symptoms up to now, since they couldn’t find a cause until the recent punch biopsy. I’m on lyrica but it doesn’t offer enough help, especially for the burning pain in my face and mouth. Any treatment suggestions would be incredible. Thank for your time!

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Hello @richj8, welcome to Connect. It's good that you are asking questions and learning as much as you can about your health conditions. I have small fiber peripheral neuropathy but only have numbness and no pain. I have no medical training or background but have found a little information that may be helpful. I'm hoping other members with experience to share will be able to respond to your questions.

Multiple Cranial Neuropathies
-- https://www.hopkinsmedicine.org/health/conditions-and-diseases/multiple-cranial-neuropathies

There are other discussions you may be interested in that discuss your questions

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

This discussion includes burning pain in face and mouth symptoms as described on the Mayo Clinic website here:

Trigeminal neuralgia
-- https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344

> Groups > Brain & Nervous System > Trigeminal Neuralgia*
-- https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/

@richj8 can you update us after you receive your test results and meet with your neurologist?

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@richj8

Hi everyone. I just joined and was recently diagnosed with SFN earlier this week, after struggling with many difficult symptoms for over 18 months. The main question two questions I have are 1) does anyone suffer from SFN affecting their cranial nerves? I’ve had burning in my right ear, right side of my tongue and throat since this all started fall of 2017. 2) does SFN cause muscle twitching for anyone?

I have follow up tests next week as my neurologist continue to try to pinpoint the cause of the SFN. They have been skeptical of my symptoms up to now, since they couldn’t find a cause until the recent punch biopsy. I’m on lyrica but it doesn’t offer enough help, especially for the burning pain in my face and mouth. Any treatment suggestions would be incredible. Thank for your time!

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Hi Rich. My husband also shares your symptoms with burning in his mouth , ear and sometimes his eyes. He was wondering if all this was caused by his shingles shot he had gotten recently? Did you get this shot leading up to your burning sensations. R.R

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Thank you for your replies! I will continue to search through all the recommended discussions for more information. I will also provide an update following my latest round of blood work this week.

Regarding the question for Rita, I havent Had a recent shingles vaccine. However, following previous bloodwork, a blood test for the active shingles virus came back positive. My neurologist didn’t have an answer for whether or not this has impacted my condition.

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