Muscle twitching, jerking, spasms with small fiber neuropathy
 

From everything I have read, I find all symptoms for SFN to be sensory and autonomic. For almost a year, I have twitching in random parts of my body coming and going all day. Sometimes they are strong and slow and sometimes very fluttery and fast. I have terrible muscle spasms in my neck and shoulders which seem to throw my whole cervical and thoracic spine surrounding muscles into a crisis. I have had the complete spine and brain MRI, but my muscle symptoms are not consistent with SFN. My doctor has be diagnosed on paperwork with progressive polyneuropathy and he is very mild with treatment (which I like and don't like). I caught a bunch of the crazy twitching on my phone video and showed him and he just said "Hmmm". I think he knows more than he tells me, but doesn't want me to lose hope.

I have muscle twitching... Worse than anyone here has described. It's literally 24/7 I get hundreds in a second all over my body ( at the same time). Mine are like u describe but also long, like the muscle will start the twitch at the top of my thigh and end at the bottom. I also have constant muscle spasms in my upper back ( area between shoulder blades) and sometimes my neck. I have only been diagmosed with sfn. Although my neuro wants to repeat my emg this month. I also jerk a lot, somedays worse than others, some days I only jerk at night while I'm trying to sleep other days I do it while awake too.

Progressive poltneuropathy... Did your emg show anything?

I had two, one showed left ulnar compression and the other was normal.
I'll probably have to have another one in a few months.

I just posted a thread on Leg Twitching before I saw this.... My twitching is only in my legs and usually 1 at a time. They would happen most every night between 12pm-2am if I didn't medicate. They sometimes feel more like muscle pulling. For me this is worse then my other symptoms as it doesn't allow me to sleep. I am going to speak to the neurology specialist that I finally got an appointment with on 9/8. If I find out anything I'll let you know.

I've had sensory and autonomic SFN for 3 years and for about the last 6 months twitching just like you describe. Sometimes strong and slow, other times fluttery. In random places except at times they've been in just one specific place for several weeks. I also get a spasm on the same side side of my neck frequently, but it's mild. My neurologist just said it's all consistent with SFN when I mentioned it. It seems like this would indicate motor nerve involvement. I plan to ask her more about it on my next appointment in a couple weeks.

Dogwalker: I know lots of us with SFN have described various types of twitching and cramping. But, I've wondered the same thing you have, about whether this indicates motor nerve involvement.

Please let us know if you get any information about this from your upcoming neuro visit.

Hi Dogwalker, Please give us an update on what your doctor says about this. I will also ask at my next appointment.

yes
 

Hello,
I have muscle twitching and sometimes jerking. Spasms happen in my arms and legs. I have SFN all over confirmed by skin biopsy. Lots of pain too.
HTH.
baba

I suffer from the muscle twitches as well. My EMG in jan was abnormal but that was all upper body and blamed on my neck which has been stable since surgery in 2012 however now my lower body part of EMG was abnormal. I askedy neurologist when I saw her about it . I got the impression that it wasn't a good thing. I'm hoping the DRS. at Hopkins know more

Symptoms of motor neuropathy can cause twitching and also muscle weakness & muscle wasting. I have not found any online source that includes it as a symptom of SFN.

I am going to a neuropathy specialist on 9/8 and I have included this in my list of questions. I will get back to you guys with whatever I find out.

I've read that SFN can sometimes progress to include large fibers and when large fibers are involved than there's weakness and other issues.

Anyone else in your family have similar symptoms? Have you had DNA blood testing thru Athena Diagnostics? Very expensive. Thank you.

it depends on what is causing the SFN, if it something like diabetes, or autoimmune it will definitely progress.
twitching is pretty common for PN, ive noticed that my twitching has increased and also the duration as well. My myclonic and hypnic jerks made other parts of my body jerked, such as my jaw randomly closes, or both my legs muscle contract and it makes them jump/

And that is where things are stuck. I've got lots of test pointing to auto immune but just pointing. I did find out that I am indeed dealing with myositis. I'm not diabetic however my neuro did a Glutamic Acd Decarb Ab blood test and I had a high titer of .40 anything higher than .02 is considered high. So much going on and no clear picture. Doctors like clear.

That may be in the near future!

BTW THANKS everyone for replying. I'm on my phone and my eyes are a mess so I'm not sure if I'm replying correctly.

I asked my neurologist if my twitching meant that I had motor nerve involvement now in addition to sensory and autonomic SFN. She said, "not necessarily; twitches can be from lots of things." My nerve conduction velocity was normal but the EMG showed chronic reinnervation, which she explained was nerve damage followed by "sprouting" of fibers from nearby nerves to compensate for the deficit. Later she mentioned that there are just a limited number of muscles and nerves that are large enough and close enough to the skin for testing, and that there could be motor nerve damage in other inaccessible areas. So, a little more information but not really a definitive answer to the question.

Thanks for the follow-up. Your right though - that information doesn't really clear anything up. A lot of people seem to have twitching and cramping along with SFN. In my case, it was the first symptom. Taking gabapentin controlled it, and now it has mostly stopped. Not sure what would happen if I quit the gabapentin though. I do know the pain increases significantly if I miss a dose, but not sure about the twitching

Muscle twitching
 

This May I had a terrible fall & broke both tibula & fibular bones in my right shin. This fall has changed my life in so many ways. In result of this fall, not only have I was been "blessed" (for lack of a better word) with neuropathy & these muscle twitching episodes. They are the most annoying things, as all of you know. Luckily, I started taking a supplement loaded with B vitamins. On top of taking these supplements I also get B-12 shots regularly. In the past several days or so I have noticed that the twitching has more or less subsided. I'm not sure if the supplements had anything to do with it or not. I videoed my hands working up a storm when I was on my computer, so when I saw the Neurologist he told me I those were tremors. Lucky me. First neuropathy now this. Well like I said they have subsided quite a bit. Has anybody tried taking B vitamins for this?

Hi Ragtop262. As you know twitching was my 1st symptom too. I stopped my sleeping meds 2 nights ago and realized my middle of the night twitching had pretty much stopped. I did get a pre-twitching feeling one night but I got up and stretched and it was gone. It's only been 2 nights and I know I must wait longer before I get excited. I'm thinking the gabapentin has controlled it. I don't know how much it helps my burning and would love to stop the drug but I'm not ready to face the possible consequences.

It could be as simple as a magnesium, calcium or potassium insufficiency or deficiency. I eat a banana when it happens and many times the twitches will stop. I stay on top of the magnesium and calcium, because I've tested low, and most muscle spasms and twitches have gone away.

What little I found out at appointment
 

I just came back from my appointment and I didn't get much information out of the neurologist, surprise, surprise... He told me I had benign fasciculations which were causing the twitches, not PN. I pressed him so I could bring back some info for you guys and IF I understood him he said twitches were a sensory symptom and that thin fibers caused the burning and thick fibers caused all the other sensory symptoms. Not sure I follow that. Maybe MrsD can make sense of it.

I hate to say this, but some doctors do make stuff up. :rolleyes:

Twitching
 

Hi Healthgirl,
I have twitches also that come and go and I was diagnosed with sensori polyneuropathy. The twitches are not every day seems to happen when my sugar is high or not feeling well. Today I am paying with the feeling of a pair of boots and burning like a bad sun burn had the twitching when I was trying to sleep, had to much Labor Day Celebration.:

I did have tingling,twitches,jerking. And now swollen ankles and feet and a feeling of I am wearing something on my lower legs and lower arms. Feels like it's all up my left side now, if I run the top of my left foot . You can feel the tingling . I was on effexor for the problems and my so called aniexty that I didn't have , I have seen an internist, nueroligist and a couple useless drs. I've had 2 Mri , and nothing. And a nerve conduction test. ThY refuse to do N emg or other test because they say it's no nueropathy. He said my Brain was irritates, I wonder if it's sfn.

Muscle twitching
 

I also have developed muscle twitching in the last month or so in my legs. The neuropathy seems like it is getting a lot worse. It used to be just my feet, now I have stabbing in my ankles and the pain is halfway up my calves. My muscles have started twitching and my calves feel like they are cramping. I take magnesium citrate. The pain has gotten so bad that I can't sleep at night. Also started new weird sensations like water dripping up my legs.

My neuropathy started with twitching which my neurologists insist are benign fasciculations. Truthfully I don't care what they call it as long as it stops because they made it impossible to sleep. I had the burning and all the other sensations you are describing but at the beginning they were not as much an issue as they later became. I am on Gabapentin but I am looking to get off it. Some people are helped by it. I am looking for a doctor to prescribe a topical with Gabapentin and other ingredients that I can use as needed instead.

Some things to try:
Slow Mag (1 in the morning and 1 at night with a meal)
Morton's Epsom Lotion
Aspercreme with Lidocaine (some people prefer Menthol instead)

Check some of the threads on topical creams and supplements. There is a wealth of information. I hope this helps.

pinkynose, you mentioned about stopping your sleep med and noticing change in twitching. Can you tell me how are you doing now? I also take sleeping pill (ambien) and wonder it some of my symptoms, including twitching, from it. Thanks.

Hi Irina
I'm doing pretty well being off Ambien. When I took the drug I would sleep 6 hours but then I'd be awake. Most nights now I will wake up more frequently but fall back asleep. Overall I am getting more hours of sleep most nights. I do not have the same feeling of tiredness the next day that I often had with the drug.

All my symptoms including twitching began lessening the 2nd day after I was off the drug. Burning was the one sensation that improved the most and all have been less until a recent flare. During that flare the days weren't so bad but the nights were intolerable especially psychologically because I thought I was on the mend.

Because my flare was upsetting me so badly I gave in and took an Ambien one night in order to escape. The next day my daytime sensations were awful. I hope to remember that so I don't do it again but I know I'm human and sometimes I just need out. At least i know what to expect now when I do.

Everyone is different and I don't know if quitting Ambien will improve your symptoms. I was on the drug off and on for 20+ years and it's not meant for long term use. I totally get what it's like not being able to sleep. Good luck!

I have jerking and shaking more so on my weak left arm and leg. I also have buzzing on and off in both legs. I have not any pain.....just tons of discomfort from intense pressure and shaking. I cannot ever get comfortable!!!!! I have SFN. Let us know!

Twitching
 

Hi,

I know it has been a while since anyone has written in this forum but i just wanted to know if any of you managed to get any further with finding out the cause of your small fibre neuropathy. It seams that most people do not have twitching with SFN but a subset (like us) do. I wander if this helps to point to the cause, as whatever it is, its also affecting the muscle ?

Also i have noticed that my twitching is usually exertional, like after streching or walking.

Hope you are all in a better place now. Please let me know if you any one has any answers as to the cause of their SFN ..... Im just starting this journey and am determined to find 'my' cause and not be fobbed off as idiopathic by the Doctors.

Thank you

I have non-stop fasciculations in both calf muscles, and have done since a month or so after my first tingling symptoms a few years ago. The calf fasciculations are permanent with me. I have also had eyelid twitches, non stop for three months, until my neuro gave me botox injections. I still have occasional bouts of eyelid twitching, but, fingers cross, tends to subside.

My understanding of twitching/fasciculations is that it could be a sign of motor neuron issues but can also be an extension of sensory problems sending out the wrong signals.

I take heart in the fact that people with benign fasciculation syndrome (BFS) have precisely the same symptoms without concern or alarm--this makes me think that it doesn't take a lot of nerve damage to cause twitching.

Thank you very much for your reply. It seams that BFS and SFN overlap considerably. I just wander if the twitching element is indicative of cause, as not all people with SFN have it. Would be nice to hear from someone who managed to find their cause and also presented with twitching.

I have large fiber sensory motor neuropathy and have had fasciculations in my calves and biceps for many years now. The cause of my peripheral neuropathy is toxic exposures.

Did you find anything that helped against the fasciculations?

magnesium 400 mg a day. right now im taking source naturals ultra-mag. its much less than it was so far

I’m glad I ran across this post. I have this myoclonic jerking. It was really bad a few years ago but thankfully subsided. The heavy flare up lasted about two years. It was worse as I was falling asleep. I too had my husband film it as I fell into a deep sleep. Neurologist said it was psychogenic. I literally wanted to choke the jerk. It as super worse when tired or stressed.

I hope yours too will subside.