I have both ME/CFS and Fibromyalgia (and a few other things).
Does anyone get what I can only describe as body jumps/jerks. They come on unexpectedly my whole body can literally jump/jerk my arms tend to either fling up or to the sides, lasts only a second but can happen multiple times a day or I can go for days without it happening. I can’t control it and don’t get any warning before it happens. It is worse when I am exhausted.
Does anyone else get anything like this? If you do have you found anything that helps it or stops it happening?
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AlphaWolf5195
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Hi there, I have CFS /Fibro and yes a few extra things , I have read here people get sudden jerks that last a few seconds, I have had it where my legs have done it occasionally, I’ve looked on the NHS online, that gives good information , what I’ve found so far is restless legs and arms , but it is a sudden jerk type movement like you say, and gives info as too why this might be happening, click on and have a read x
Many thanks for your reply I’ve had a look on NHS site for restless legs but the symptoms seem to be different to the ones I have. My body tends to just jump or jerk just once then say 30 mins to an hour later it does it again and can continue like this throughout the day, it’s not repetitive in one go which seems to be what the periodic limb movement suggests.
Hi I've got fibro and a couple of other things. I started to get jerks in my foot and leg on a night wasn't all the time and still learning about fibro I had put it down to that. Then 3 weeks ago I started to get it every night to the point when it happens when I'm in bed it doesn't wake me up very often but it does my partner. As I've had to wait just over a week for my doctors appointment, I was looking on the NHS website the other day at fibro and couldn't see this on there but as someone else has said it could be restless leg/arm syndrome or periodic limb movement (PLM). So I agree, maybe worth having a look on the NHS website and having a word with your doctor as fell about it. Due to mine being like it is at the moment my doctor has put me on a medication today to see if that helps me and he's sending me for blood tests as I know he said there is a few things that can set it off.
Many thanks for your reply, I tend to get mine during the day mainly and it’s only one jump/jerk at a time then it’s over 30 mins before it happens again, it has so far never been several in a row, one straight after the other. I’ve read the symptoms of restless leg and PLM but mine doesn’t seem to fit that description. I hope you can get yours sorted out.
Hi AlphaWolf, yes, I have experienced this. I have me/cfs, fibromyalgia and other illnesses too, including ibs. My doctor thinks I have fnd (functional neurological disorder). I'm sorry you have these issues xx
Many thanks for your reply, I must admit I have never heard of FND before, I’ll have to look into that. Is there anything you or take which helps your symptoms?
I take Neurontin 200mg 3 times a day to dampen down the Nervous System and Duloxetine 180mg once a day for nerve pain. They seem to work well. Hope you get the treatment you need xx
Yes I get this, day and night. It reminds of that feeling you get when you're falling asleep and your body jerks you awake. My legs jerk as well as my arms. It's just something I've put down to fibromyalgia
Hi there are a number of conditions which can cause involuntary movement in the limbs. They can be related to sleep disorders, medications and neurological problems to name a few. My wife suffers from restless leg syndrome and periodic limb movement disorder. There can differing symptoms. My wife's symptoms did not fit the classic symptoms and she had some symptoms but not others. With all conditions there are variations in how each individual reacts. Some symptoms come earlier whilst others may come later while others may not come at all. Personally I would speak with my GP as investigations can take time. My wife's conditions are normally associated with sleep problems however her symptoms did manifest during the day and became worse at night but being asleep she did not realise how many episodes she was having. I did as I was the one being kicked etc. On investigation by the sleep clinic during REM sleep she was having up to fifty seven episodes an hour.
Hi AlphaWolf5195, I get these jerks in bed and they wake me up. Mine are literally in my lower half from waist to my feet. Feels weird as no control over it, jerks last a few second, stop then start again 2 minutes later. Can be like this for 5 minutes then stops. Not restless leg syndrome though as I have that to, this feels different. Like many others I have put it down to fibro
Hi Alphawolf5195Yes I get this. I have noticed that for me it can be later in the day and affected by poor sleep,diet,stress and doing too much. I did not go back for a formal diagnosis as being with so many hospital departments was taking a lot of my time for little answers. Sounds rather ungrateful but other people can have those appointments.
I have found sleep key in keeping it to a minimum. It has not got worse over the years.
Hi, as others have said there are a number of things which could be causing or contributing to this. Low vit D, calcium, magnesium and B vitamins amongst others. Magnesium and the Bs are commonly depleted by stress/illness/fatigue etc so may be most likely. As you have ME/CFS you may already be having B vitamin treatment? Perhaps it is insufficient. I used to have this regularly and now only get one or two if unwell (eg when I had covid), and no longer have RLS which I'd had since childhood. Gluten intolerance was making my iron and other nutrients low (and the gluten directly can cause neurological symptoms) - so I'm gluten free, using magnesium spray each night, treating my B deficiencies (after testing, not before as it will distort the diagnostic picture). If you aren't taking Bs, ask doctor to consider serum B12, serum folate (B9) and active B12 (holotc) if possible, in the first instance. There are other tests which can help but no test can rule out a B12 deficiency. Some get a FND diagnosis when testing has been inadequate to rule out a treatable or even reversible cause. Cheers
I'm sure it's down to getting old! Haha I jest! I have fibro (over 10 years, I too have other illnesses,It never ceases to amaze me that Fibro can change from 1 day to another,
Different symptoms almost every day, No let up, Sometimes I wake up in so much pain,I can't move,I can't even think anything else but, Oh crap I'm still alive!
Then after they are fed my 2 Yorkies will come hurtling up the stairs to say hello,Where were you? It's been ages, I love you and what's for breakfast?
I know Hubby is coming with my coffee and I know it's just the simplest of things, How wonderful my little family are all here to say,
I LOVE YOU!
My jerkiness started around 6? years ago I think,I was sat in my chair, Dog on my lap, Just minding my own and went to take a shlurp but jerked, coffee every where, (good job it wasn't boiling hot) It happens a lot so we changed my normal cup to a travel cup,and have a big towel round me for dinner,If I'm stood up (rarely) My knee will jerk so hard I cry out with the pain and hope there is something to sit down on immediatly, I try to practise my cursive writing, Hmm, I like to knit animals but sometimes I get so frustrated because the bit I was working on is now off the needle, Grr
My legs jerk all the time and through the night, I have RLS,
I am very angry with Fibro and all that sails with her, She's snatched all my plans and life we'd planned, I can't even garden anymore, I just am fasinated how exhausting it is to prune a small bush went sitting right next to it???
So in answer to your question, Yes I do,
Many moons ago a locum at the doctors put me on some tablets, (I think they were something to do with eppilate (sorry I can't spell)
About 20 mins after taking it I experienced the worst pain in my head, I couldn't open my eyes because it was light and my hearing was totally shot and my whole body didn't feel my own,
The cure?? stop taking them, I hope at least 1 of the answers people have written give you some sort of intake to the issue, Be well, Take care
Hi, just wanted to say that also get angry with fibro. I know I should just be grateful that it's not anything life threatening but I also had plans for retirement with my partner and now they might not happen 😒
When I didn't know this 💩 was a thing, Hubby had really good jobs and enjoyed life,Our children are all off doing their own thing, We thought about selling everything we owned and buy a motor home and travel, Didn't go to plan
Hubby had his AAA( I can't spell it but the main tube from his heart split and he lost a kidney and couldn't feel below his waist, I thought I'd lost him and thank god he is here with me, We think that's the time my fibro really kicked in, We lived in a 3bed lovely house,But I had to find us a new place to live, The housing assosiation gave us a 2 bed, I decorated the whole place and made it all cosy,
I looked after him and here we are, No jobs,no health and we have to rely on benefits and pension, to live on, We don't know we'll be here this time next week but We know there are people far worse off than us, But we are here, together and count ourselves lucky that we are here now,
Hi, I also have fibromyalgia and get the jerking limbs. It's usually when I'm tired and especially when I'm drifting off to sleep. I've even cut my eyebrow when my arm has jerked up and hit me in the face! I don't have a solution but you aren't alone😀
Yes, I've got FM and a few other things. Texting in the morning is annoying because of my fingers having minds of their own, not only fingers but wrist as well. I put it down to taking Pregabalin, currently 150mg at night, that's all. It is such a great medication that I don't want to forgo it. I wouldn't sleep for a start. Since I have reduced the dosage recently, the jerks don't seem so bad as they were.
I have the same thing then Doctor said it was Myoclonic Jerks, due to CNS Involvment. Hope this helps, at least you can ask if it could be what I said. Have a great day.
Sorry for late reply, I’ve been going through a bad flare up and lack of sleep. Thank you to everyone who replied. It’s really helpful and comforting to know that I’m not the only one with this and that others have it and it’s not a major health issue, just an annoying problem. I haven’t spoken to the GP yet about this as I have too many more important medical issues I’m trying to sort out first and trying to get a GP appointment is nearly impossible. I usually have to wait 3 or more weeks to get an appointment and then you are only able to discuss 1 issue.
Thanks again for all your help. I really appreciate it.
Just wanted to say I have FND as well as fibro. I was diagnosed with FND about 3 years before fibro. Apparently they go hand in hand. I don’t have seizures like a lot of people with FND , but I do have these “jerks” twitches and spasms in my body which is exhausting. I unfortunately there is no test for FND , like fibro. They can do a “Hoovers test” but it isn’t always reliable and you have to be displaying other symptoms. They have explained it to me “it’s like your body is like computer software and your brain is the hardrive. The software has gone wrong and sending mixed messages” ( basically your body is doing things your brain is not telling it to do)
Having recently read up on FND as another person here mentioned up (I’d never heard of it before) I do wonder whether I maybe could have it as well, although I don’t want to self diagnose. As well as these jerks, I have facial spasms and loss of speech occasionally. I also have seizures, originally diagnosed with epilepsy over 20years ago then approx 5-10 years later told my epilepsy wasn’t currently active (I’m on medication for it) and I was having non epileptic seizures. Now when I have seizures I don’t know whether they are non epileptic or whether my epilepsy is active again, I haven’t had an EEG for 10-15 years. My seizures don’t happen that often, so I tend to ignore them now. I am also hyper sensitive to sound, light, smell and pain. My GP just seems to put all my symptoms down to ME/CFS and Fibro.
hi I get myoclonic jerks and saw an epilepsy specialist and I take clomazipam which helps a bit but I get them every day and they’re quite severe. It’s definitely worth mentioning to your dr if you can ever get to see one or do an econsult and ask for an epilepsy referral. I hope that helps?
I also have ME/Fibro/ psioritic arthritis etc etc.
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