Muscle Spams and Neuropathy

Posted by jeanniem @jeanniem, Jun 10, 2021

I was diagnosed last year with small and large fiber neuropathy. Originally, the neurologist said that he thought it was a slow-moving peripheral neuropathy. Since then, it has been suggested that this is an atypical polyneuropathy. And things are advancing at a pretty regular basis.

One symptom that has increased significantly over the last couple of months is muscle spasms. I am having them in my lower leg and foot and there is one spasm in particular that just won't stop. It is beginning to last longer and longer. For those of you that have neuropathy, is this a common symptom?

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Recently instead of just pain in my feet now I have electrical impulses that make my foot like restless leg syndrome and then others that turn my ankle so it's very painful and I have to get up out of bed and stand to get it better. I didn't think I'd have to worry about this but now I do since it happens all the time. I wish there was something that could be done more than what I'm trying now. I have a new doctor so perhaps I will get some answers. Good luck to you and keep trying to get new answers

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Swimming in warm therapy pool helped me

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Profile picture for julbpat @julbpat

Slightly different topic, but I have started having (mild) jerking and twitching in my hands, but only in the mornings. I can feel it in my thighs also, but with my hands, I can see a visible twitch. It goes away after the first hour of the day. I think it might be myoclonus, but my neurologist isn’t ready to call it that. I am also having a test today (VNG) to see if my new morning dizziness is possibly inner ear. I’m afraid these two new symptoms are a sign of my SFN progressing.

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@julbpat just reading this now. Have things resolved? What is the diagnosis? I’m having little twitches.

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Profile picture for penn1023 @penn1023

@julbpat just reading this now. Have things resolved? What is the diagnosis? I’m having little twitches.

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@penn1023 Hi. It turns out that many of my odd twitches, dizzy spells, seizure-like activity, etc were related to high doses of carbamazepine (Tegretol). I was trusting a new-out-of-residency neurologist. He had been in a program at a prestigious nearby university. Since I had a definite diagnosis (idiopathic length-dependent small fiber polyneuropathy) and am a nurse who researches everything, I decided to "try" this new doctor. Well, over time he increased my Tegretol dose until I was taking 1000mg/day. I kept feeling worse, and my pain was worsening, so he just kept bumping up my dose. When my UAB neurologist figured out what was happening, he immediately started dropping my Tegretol dose. I now take 300 mg twice a day. This medication works better for my neuropathy pain than any of the other seizure medications. I was just taking too much. I have quite a few records detailing the numerous specialist visits, and diagnostic tests done during this time.
I could be angry, but that takes too much energy. I'm irritated with myself for not realizing what was happening. Much harm was done to me by this doctor. I no longer see him, and I think he was really relieved, because he was in over his head. I lost over a year of my life lying on my sofa fighting dizziness. All that is over now, and I'm back to the usual neuropathy pain, fatigue and weakness!

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Profile picture for cax75 @cax75

Recently instead of just pain in my feet now I have electrical impulses that make my foot like restless leg syndrome and then others that turn my ankle so it's very painful and I have to get up out of bed and stand to get it better. I didn't think I'd have to worry about this but now I do since it happens all the time. I wish there was something that could be done more than what I'm trying now. I have a new doctor so perhaps I will get some answers. Good luck to you and keep trying to get new answers

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@cax75: Hi, I also suffer from leg spasms. The doctor has given me a prescription in the past that worked called Baclofin. I now recently found a foam called Theraworx and a chewable pill on Amazon called Zapcramp. Both over the counter. You might want to try? Gentle hugs

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Profile picture for rmshackelton @rmshackelton

@cax75: Hi, I also suffer from leg spasms. The doctor has given me a prescription in the past that worked called Baclofin. I now recently found a foam called Theraworx and a chewable pill on Amazon called Zapcramp. Both over the counter. You might want to try? Gentle hugs

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@rmshackelton Hi, thanks for the suggestions and a fast response! My doctor prescribed
Baclofin. I begin taking it tonight. Also try this - sounds crazy but works- put 2 bars of unwrapped soap under the bottom sheet on your bed at the place where your feet would touch.
It works. Sending hugs back to you.

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Profile picture for cax75 @cax75

@rmshackelton Hi, thanks for the suggestions and a fast response! My doctor prescribed
Baclofin. I begin taking it tonight. Also try this - sounds crazy but works- put 2 bars of unwrapped soap under the bottom sheet on your bed at the place where your feet would touch.
It works. Sending hugs back to you.

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@cax75
The soap does help, weird but it does help. I just need to find it before I wash my sheets!

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