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Does Small Fiber Neuropathy also cause muscle spasms?
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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Hello @tricia7681, I would like to add my welcome to Connect along with @artscaping and other members. My idiopathic small fiber peripheral neuropathy led me to searching for help like most of us here that found Connect. It can be what seems an overwhelming feeling dealing with the pain and other symptoms of neuropathy. I'm hoping you can find some answers here from experiences shared by members. Here are a few other discussions you may find helpful:
- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
- Neuropathy and Brain Neuroplasticity: https://connect.mayoclinic.org/discussion/barry-sheales-australia/
- Neuropathy & Exercise: https://connect.mayoclinic.org/discussion/neuropathy-exercise/
Another really good source of information for learning about neuropathy is the Neuropathy Commons website - https://neuropathycommons.org/. Have your doctors offered or discussed any alternative treatments or therapy for your symptoms?
Thank you everyone. Just reading this was so emotional. To read I am not alone or imagining my symptoms is one step closer in trying to understand SFN. I just want to know why it has gotten worse over a years time.
Yesterday I didn't take the gabapentin all day or at night and I was in a good place. Then in the middle of the night I was reminded by the pain I would never be painless. The gabapentin works, but not 100% and I can't take more than 300mg or I'll be a zombie.
There has to be a reason this happens to the small nerves. Why are doctors clueless to this disease and just make you feel like it's in your head? There are times I have left the doctor's office in tears after being told it's psychological and I must have PTSD. To the point I started thinking maybe they were right. It was my husband that pushed for the SFN testing.
Does anyone know why the muscle stiffness and spasms occur?
Tricia
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1 ReactionI have the same at 37, drs can't explain it either. The neurologist said it typically happens in the elderly, offered me gabapentin 200mg a year ago but I declined due to potential side effects. Does the gabapentin release the muscle tightness/freezing?
@tricia7681 Unfortunately there are a lot of different causes for muscle stiffness and spasms. Here's an article that discusses the topic.
"Jan 22, 2018 — When your muscles contract, become stiff, or spasm involuntarily, it's called spasticity. Spasticity can make it difficult to: walk. move." - What Causes Muscle Spasticity?: https://www.healthline.com/health/spasticity
I still get the stiffness in my feet and ankles even with gabapentin and the spasms in my arms and hands as well. The gabapentin for me calms the pain, but it doesn't take it away.
Does anyone get it in the face like me?
Good evening @strikeanerve. I don't think I have had a chance to say Welcome. Where have you been? (Just teasing.). I have been reading other members posts about gabapentin. I take 900 mg before bedtime. I cannot tolerate it during the day and have chosen medical cannabis for pain control. So why gabapentin? I was reminded of gabapentin's value a couple of weeks ago. Without knowing it, I forgot to take my 3 tablets at bedtime. I usually want an hour before bedtime during which the gabapentin reduces the numbness and burning in my hands. So.....I forgot to take it. The result was one of the most disturbing nights I have ever had. I couldn't relax and go to sleep. The pain began to throb. So......I finally realized what had happened at about 4 a.m. Took one capsule and finally went to sleep.
I won't forget my gabapentin again. It is critical for me to reduce the irritation in my hands so I can sleep. I might like Lyrica better. Do you think so?
May you be free of suffering and the causes of suffering.
Chris
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1 Reactionthat happened to me this week. I didn't take it because I felt great and I paid the price at around midnight. Never again will I skip a dose. It's sad though.
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.
I have poly neuropathy and leg spasms at night that last between half an hour and 5 or 6 hours (in one or both legs). Thankfully not every night. I take B vitamins, magnesium and CBD oil and put Voltaren cream on the most painful parts of the leg before going to sleep. Well, if I DO sleep. Hope this helps!
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1 ReactionI sleep with a heating pad under my legs and it stops the leg spasms.