Does anyone else experience involuntary jerking movements of your legs, arms and body?

I did not have this problem at the beginning of my Fibro, but over the past several months I have. I can be lying down resting and all of a sudden my leg will actually lift or my body jerks. It can also be my arm or even my head that does this too. This affects me when I go to bed sometimes and does prevent me from falling asleep it can also wake me up. Thank God no one is sleeping next to me because they might get a kick or my arm in their face! I have actually kick my dog...poor little thing. So I mentioned this to my doctor and he gave me a prescription for a muscle relaxant (Cyclobenzaprine) and I have taken them, but don't feel that it really helps and furthermore they knock me out even if I only take 1/2. My question is: Is this muscle spasms or is this nerve related? To me it feels more like nerve...I don't feel that I have done anything to provoke this and wonder what brings these on? Is there anything else I can do to minimize these jerking movements? They are very annoying!

hi. i used to get this when i first got fibro, now i take 1/2 a rivitrol tablet which is also muscle relaxant and it too knocks me out so i take before bed, and it helps alot. It also helps restless legs syndrome.

Hi, so I was thinking that maybe one of your medications might be causing muscle spasms or jerky movements/tremors, because I know that those happened to me on a couple of medications I took , and some I am still taking like, seroquel, lithium, and lyrica. So check into that

I have the same body twitch/jerky/spasm type thing to! You should get a mineral test done to see if you are deficient in magnesium (I want to get this done but haven't been able to yet.). What helps my twitches is soaking in epsom salt baths. I want to try magnesium bath crystals but I haven't been able to yet. They are supposed to be more effective because they are a higher concentration of magnesium. I'm also about to start switching my table salt out for raw Celtic sea salt (which contains lots of trace minerals like magnesium) so I'm hoping that will help my twitches, I just am waiting for my new salt to come in the mail. I've never taken a muscle relaxer even though lots have been prescribed to me. I am completely off all medications now. You might want to look into what could be causing your fibromyalgia and body jerks. For example the bacterial infection h. pylori can embed into your muscles and cause that side effect. A kinesiology doctor who does parasite and bacterial infections is the type of doctor you would need for that. An integrative medicine doctor will help too. Also maybe you have a lot of toxins in your body and will need to see a doctor who tests for heavy metal toxicity in the body (like Dr. Nancy Mullan-she does phone appointments). I am working on getting appointments with these three types of doctors but can't afford it yet. You should check out which is a blog by a girl with a lot of health problems (and has muscle jerks) and has helped my conditions and has led me to find these different specialists who work to heal people of fibromyalgia. There might be other specialist who work to cure fibromyalgia and other paths you can take, I am still researching it myself. Those are just the three specialists I am trying to get to, so they are the ones I recommend.

I hope you find some relief soon! :)

Wow that is a long comment I just made! lol I'm new here, hopefully I will figure out how to keep things short.

I should have specified I take epsom salt baths usually every other day and I soak for 20 minutes. I read a few places that say to do it 3 days a week, but I haven't noticed any problems with doing it every other day. I've never read anything about how it is bad to take too many epsom salt baths.

I experience the same twitching or jerking with my muscles all the time. I'm not sure but its probably nerve related, haven't been able to find any help for this yet.

Thank you all so much for your feedback! Gives me a few things to think about. I did go off one medication (anti-depressant) as when I mentioned to my doc about jerking and twitching he said it could be related to the medications going against one another. Made sense to me. So I did what he said and I might add I don't have this on a daily basis. I think I am going to monitor this to see if it's not related to times where I am more stressed about things or maybe just a question of being over tired from lack of sleep during the night. I fall asleep with no problem it's just I wake up about 2 1/2 hours later and sometimes I can't get back to sleep! I know this is a big issue with Fibro so I know I'm not unique in this and apparently not unique with the jerking and twitches either! :)

Welcome Yellow Daisy! I appreciated your response and do not worry about the length the idea is that we take that leap and join in. Sharing is what we do here! I also appreciate the fact you have chosen to not take the traditional methods of treating Fibro. If the natural way is working for you that is so wonderful! I have tried a few things like acupuncture and I do take a magnesium supplement daily as well at Vit D and many others. I also have had many blood tests which all came back clear! Like you I am not in a great place financially to explore other things. I do know one thing for sure and I'm sure most of the members here will back me on this and that is there is no cure at the moment for Fibro and anyone who gives you the illusion that this is possible, in my opinion is trying to take advantage of other peoples bad fortune health wise and vulnerability. That is not to say I do remain positive and hopeful that one day there will be a cure! I will definitely try to take more epsom salt baths and I will also bring this up with my doctor on my next visit. I feel comforted that I'm not the only one who is experiencing this! Again thanks for all your great advice! Hugs...Sue (aka Dreamcatcher)

Yeah I am pretty wary of the idea of curing fibromyalgia but I don't want to not see them and then go my whole life thinking what if I would have visited these doctors and at least tried to cure it. I also have a number of other health problems that these doctors have had success with healing. Fibromyalgia is just one of the things affecting me. Thanks for your reply :)

Hi Dreamcatcher,

Yes, I have them. They seem to occur when I'm falling asleep or are asleep. Like you, sometimes an arm or leg will jump way up in the air and frighten me awake. I never had them before I started on fibro meds. I noticed them when I started taking my meds. Could they be related to the fibro meds? I don't know. But I think it's telling that others with fibro get them. Must be one of those fibro things.

I don't know if it's nerves or muscle spasms. I also don't know how to control or minimize them. I agree that they're annoying but at least they aren't painful. That has to count for something when fibro's concerned, right?

Hi dreamcatcher, how are you?
Yes, this does happen to me on occassion.
When it happens, I say “Woe!” because it takes me by surprise. I can’t help but chuckle cuz it’s so weird.
I’m wandering if anyone else that responded takes the gabapanten ( nuerontin)…??? I’m wandering it this medicine can cause it…
One thing we can be happy for is that it doesn’t hurt. We have enough of that already. : )

Love Lisa

Yes Lisa and Petunia in the least it doesn't give us pain! lol That's the bright side of has to be related to Fibro. Muscles or nerves who knows right? Lisa you mention your on Gabapentin...I'm taking Cymbalta. So maybe not medication related. Just another crazy symptom of Fibro! I just feel weird about the movements especially it would happen in public! So far so good...just my fur babies have seen that side of In some ways this illness is mysterious and full of surprises!!! I think I'm beginning to dislike surprises!

Hi Dreamcatcher !

Everyone has given you really good input! The body jerks (myoclonus) seem to be pretty common among FMS patients, along with other movement disorders. They can be caused by many things like were already mentioned, and the ones we seem to hear about most are neurological issues, medication reactions, and deficiencies in Iron, Magnesium, and Vitamin D. I have also been told they are hereditary. (Thanks Mom...!)

I have SEVERE restless leg syndrome, and like Tammy said, I also think stress makes it much worse. When I was in the hospital after my last couple of surgeries, it was the absolute worst. Even though I take 3x the supplements, I still have to take an extreme dosage of Requip every night to keep it under control, otherwise I pace the house crying all night. It's scary when your limbs are moving against your will, and when the jerking wakes me up, it's really painful for a moment! I would ask your doctor about it, because he can maybe do some basic bloodwork to see what's going on.

Wishing you calm sleep!

Talking about furbabies -- my mother had really bad movement in her legs, and would often kick the dog right off the bed in her sleep! The dog got used to it, she would just jump right back up and snuggle in.... poor baby!

I’m right there with u on the surprises. Not liking those too much myself.
I sure do miss being on here. It helped so much. It’s been just here or there lateley. I’m hoping to get back on track. : )

Lisa I was wondering what happened to everything okay? Is you pain bad? Well I do hope it's nothing too serious. We look forward to when your back on for sure!!! :)

Hi Renie!

Thanks you for your input! I did indeed get a lot of great responses and I was surprised to hear that so many are experiencing these body jerks and now I have a medical name for it!! I did talk to my doctor about it and he took me off one of the anti-depressants I was on because he said perhaps the interaction with the Cymbalta already having an anti-depressant in it could in fact be giving me these jerks. Well it is now several months later and I'm still experiencing this. It's not life threatening or painful just annoying and my poor puppy took a fly off the bed one night too! I felt so bad. I have to agree that stress could be making it worse. I have had so much blood work done with my Rheumy and my pain management doctor who is my primary doctor from the beginning of this journey! All turns up okay. I do also take supplements like Vitamin D, Magnesium, B12, Calcium, Omega 3 hmm I think that's it! I hate taking those big suckers! I hate taking pills period!! I am definitely going to bring this matter up with my doctor the next time I see him. I'm just glad I'm single and haven't injured anyone. First time I hear myself saying I'm happy to be single! I certainly hope I won't be the rest of my life, but hard to find a good man these days without an illness to deal with let alone add this on top it! Could be challenging!! lol Well I'm off to bed. Thank you too for the nice wishes for a calm sleep...I hope so for me and for you :) Hugs...Sue x

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I have small "muscle spasms" that affect me like cold chills and if an area is particularly painful, I will have muscle spasms/cramps in that area.

However when they put me on gabapentin I reacted very badly to the medication, causing my arms and legs to move uncontrollably, similar to what you're talking about, Sometimes it was almost like I was having a mini waking seizure is the best way I can think of to describe it. I will never ever take that medication again.

I used to until I discovered I didn’t have any REM sleep. I do now though and the jerking has stopped.

Keirsten...tell me what you did to now have it? I know this is a problem as I like a lot of people here don't get a good nights sleep. I have no problem falling asleep, but I always wake up 2 hours after and most times can't get back to sleep for a couple of hours. Because I'm not working I don't worry too much if I sleep in later in the morning, but I don't think this is the best sleep where the body replenishes itself. Thanks for your response!