Whole body jerks

Hi, does anyone else have these symptoms. I can feel them coming on but only by a second or so before but I can not stop them. When the jerks hit my whole body jumps ( like when someone shouts behind you to make you jump ) its painful as it moves the bits of me that are hurting. It also leaves me feeling scared.

Sometimes these jerks happen to one limb, other times more. It can happen while I am trying to get to sleep, it can wake me up, or it can happen throughout the day

Please does anyone else have anything like this.

I was told a few months again I have fibromyalgia and for the pain I take Pregabalin 75mg , MST 35 mg both twice aday

And for breakthrough pain I take Oramorph 10mg/ 5ml every four hours

I really hope someone can tell me what is causing this


Caroline xx

26 Replies

  • Please try not to be scared x go to doctor if your really concerned. Ive had jerks on and off for years, especially in bed, jump to the ceiling feels like, whole body sometimes then just legs.....it will lesson as time goes on

    Hope that helps x

  • I have had exactly what you describe as well as shaking and trembling at times. My gp tries to tell me it is due to emotional problems, but the counsellor psychologist I saw a few years ago said I am okay and that the depression and other symptoms are caused by my illness and not being able to have a proper life. I also had symptoms of episodes where I would shout or make weird noises and sometimes babble nonsense words or sing song things. This only happened when I was trying to do what my gp said which was getting up and moving around every half hour. I was literally putting my body under too much stress while in a lot of pain. When I stopped pushing myself, these symptoms stopped almost entirely. When the pain gets really bad, though, I still get jerks or some trembling. I try to breathe and lie still until it gets better, at the same time take some extra cocodemol on top of my normal doses of pregabalin. I also sometimes take a baclofen tablet which is a muscle relaxant that my gp prescribed when I asked for it. I do not take it all the time, as I am worried about various things it might cause.

    When I was having these episodes I asked my gp if I could have more tests done. She sent me to a Neurologist. I was so hopeful, but he only did a brief interview and a few simple tests like looking into my eyes and telling me to follow his pen movement, etc. and then he said no further testing needed. I was extremely disappointed about this.

    I still feel that I should have had more testing done to rule out more serious conditions, but at least when I began to take more concern for the amount of pain I'm in and not push myself, it did stop or get better. I do not have a job, and I do not have other reasons for stress or anything like that. After that time, I got DLA and started to pay a cleaning person twice a week for one hour. This helped tremendously, as I now can only do things like taking care of myself instead of trying to clean my home and do the washing up.

    I hope this helps. I know you must be scared as I was. I worried that i had a brain tumour or a degenerative disease. I also found these symptoms on a long list of M.E. symptoms online. I found most of my symptoms on that list. I am trying to change doctors and hope I might find one who will look into ME to see if I have it.

  • Hello, my Dear! 8i live in the US, and am pleased to make your acquaintance! In reading your post, I gather that your GP thinks that your symptoms are in your head. M advice would be to get another GP.

    YOUR SYMPTOMS ARE REAL: unrelenting pain all over your body, mental fog, depression, jumpy and painful legs and muscles that twitch whenever they feel like it, especially when you lie down at night, blurry vision, to name a few.

    The neurologist should have gone through the tender points check: usually 11 out of 18 gives the diagnosis. Most people have a hard time finding a doctor who will really listen to them and have enough concern to be informed at least the basic information about Fibromyalgia.

    You are on this site so I applaud the indomitable spirit in you! All of us who ave this danged Fibromyalgia are constantly searching for the next best remedy!

    You should try to drink plenty of fluids, eat a balanced meal (more veggies and green salads than meats and pastas or potatoes) and move (yoga or walking if that is what feels best for you on that particular day. Good days, bad days is the norm. Resist the urge on good days to do too much. Rest in between chores or activities.

    I'm no doctor or a nurse or pretend to know it all, but I kindly give you a snapshot of the things I've learned and have been able to work into my life. Everybody's different, just be kind to yourself and enjoy things as much as you can.

    Good luck! Mini

  • Wow! Just realized these posts are from three years ago! Budgiefriend, I hope you've found some relief in these past several years and are managing a little better! Cheers!

  • Hi Carolinee71,

    I get this and it was really bad and also quite dangerous for my partner in bed as it affected my arms as well. I rarely get this now, well, not anywhere near as much or as violent as I did... It has been dulled by the large dose of Pregabalin I am on - the max dose of 600mg/day in fact. Perhaps you could discuss this with your doctor and try a larger dose. It is, of course, an anti-seizure drug.

    Good luck

    Gary x

  • ditto! Peachy, Pregabalin was what they prescribed me for violent jerks/ body spasms and I agree that a chat with the GP is a good idea.


  • I'm so sorry you are having such a hard time with the body jerks/spasms I can completely empathise I have struggled with this problem all year but like Peachy I'm on Pregabalin to help control it. My neuro team said it was body's way of emitting pain when our pain receptors are full and overloading, which us fibros are constantly battling.

    I also agree with Peachy that a chat with your GP could be worthwhile if for nothing else but to reassure yourself :)

    What colour Fluffies would you like? to ease and support you right now Caroline I'm sending some to you so you can choose.

    xxxzebxxx gentle fluffy cuddles and hugs

  • I was just wondering what fluffies are. I have severe fibromyalgia and jerks. Does it help?

  • Gentle Hugs and cuddles! They're free and you can even give them to yourself!!

  • Thank you so much for all your answers, I have hot an appointment with my GP towards the end of the month and I will have a chat with him about them

    Caroline xxx

  • Hi I get these body jerks too. Mainly in the evening or when trying to relax, often take me by surprise,not good if holding a hot drink, im also on pregabalin 150mg twice a day.also nortriptyline 75mgand butrans 20 patch:also I have definitely pu

    T on weight since starting pregabalin

  • Hi Caroline

    I've been getting the involuntary jerking, so much so that I had to go to my Dr as I had started dropping & breaking things. I have also developed a stammer too but it only seems to come on when it feels like. My Dr carried out a few we silly tasks but has referred me to a Neurologist but God knows how long I'll wait for an appointment.

    I'm new to the site & am unable to see your other replies.

    .I hope you are as well as you can be.


  • Hi thank you so much for taking the time to write. I guess you may have fibromyalgia too. Do you have to take tablets regularly as I said I take a handful of them night and morning.

    It sounds that you do have similarly problems to me. I too have now been referred to a neurologist as well. I must've been lucky as to where I live and by having the most amazing GP ( I think he is great, he has been our family GP for almost 18 yrs. He is able to chase up appointments and get them sorted quickly) sorry rambling, as I said my GP referred me two weeks ago and I go to see a Neurologist on the 10 th April. I really hope I will get some answers.

    I hope you have got your appointment through now and you don't have to wait too long.

    You say you are new to the site,I hope you have felt very welcome and have been greeted by a whole load of strange people all of which have the most knowledge about fibromyalgia ( more than most doctors) and are willing to answer any question. We are a friendly bunch. I like it as none of my friends understand what I mean when I say I am in pain.

    I have to count my blessings, I have two amazing daughters who are almost fully grown. I live in a lovely area and am moving into my dream house next week. I am very luckily .

    I hope you are finding answers, if you see the Neurologist before me and get any answers pleased let me know.

    I hope the sun is shining and the flowers are smiling

    Look forward to hearing from up.

    Hope u r having a pain free day


  • Hey Jackie,

    I get the stammering thing too. It really freaked me out when it first happened... I thought I was maybe having some kind of stroke or something. I never did find out what it was. This condition is so confusing and elusive. Frustrating. I hope you're doing well.


  • I wonder if this thread is dead by now. . But I'm brand new to this site. I'm trying desperately to figure out what's wrong with me, I've asked several doctors to help me, and none were all that interested.. I'm on state medical, so my ability to keep finding new gp's is limited.

    I just had another random violent body tremor which caused me to Google it and led me here. Where I see that the stammer/stutter I have recently developed is mentioned. I was thinking I had Lupus, but the more I read about Fibromyalgia the more it seems to fit.

    Sorry for hijacking your comment, I just needed to comment my thanks for the slight linking of my symptoms!

  • Yes Caroline I too have fibro, was diagnosed 4 years ago. I take Pregabalin, Naproxan, co-codamol, omperazole & others for high BP & Simvastatan for cholesterol.

    Thanks for replying, I'm new here & not sure how it works yet.


  • yes i get this and it is very scary its not nice for my husband either because when i get them in bed he has been hurt and woken up which isnt good when he has to drive all day xx

  • Hi Caroline I was just wondering how you got on at your Neurologist appointment in April. I have finally got my appointment through & go on 18th June.

    My jerking & stammer stopped for a while but has now come back. I hope it stays with me for my appointment in just over 2 weeks & they can see me at my worst.

    I still haven't posted on this site but think I've now worked out how it operates now so will update my profile & start chatting & commenting on posts.

    I hope you are feeling positive after seeing the Neurologist & getting treatment for whatever has been diagnosed.

    Jackie xx

  • I have these body jerks and I've had them for a very long time now I would say 15 yes now.I've always thought it was my nerves or nothing that serious. I had 2 episodes that were the most serious, the first I fell straight on my ass while walking on the street and another I was pouring a drink and had a severe jerk and droped the big picture of iced tea.I'm on no medications and have never spoken to my PCP about this but I plan to now.

  • have any body ever had drinking problem.. because some time if your trying to quit it can cause these same reactions

  • I ran across this site while searching body jerks. I am so glad to find out that I am not the only one and I have been diagnosed with fibromyalgia and obviously is brought on or part of this awful condition. The jerking just started in the past couple months and I have been diagnosed with fibro over a year ago. I also have experienced insomnia and because of that I am really tired most of the time even if I do finally get 5 or 6 hours of good rest which is not often. I am on several medications including gabapentin, tramadol and Cymbalta. I also have a heart condition and medications for that as well

  • Tramadol is not a good drug, have been on it in the past for degenerative arthritis and disc disease. Had to recently undergo brain surgery to remove a large tumor. My brain surgeon was extremely pleased I was no longer on Tramadol, advised me not to go back on it as it was not a medication he would advise anyone to be taking.

  • I agree on the tramadol and I would be really concerned but I am taking a low dose and only once a day. I am hoping to get off it but right now am having trouble sleeping and it does take the edge off of the pain so I can sleep some. I will talk to my doctor about it next time I go as I have heard some bad things. Thanks

  • I get the body jerks badly and I do have fibromyalgia. The more stressed out I am, the more I get the body tics. They can be violent at times and they do scare me. I am on gabapentin if I spelled that right. Its for nerve pain as I also have Complex Regional Syndrome but they use it for fibromyalgia also. I am in the states and need a new doctor. Hope I helped.

  • I get body jerks and I thought I was alone with that I have fibromyalgia and it's not like the one you get just before you go to sleep it's a big movement and anyway sleep what's that lol x

  • I have been going through this quite a bit. But for the past year have only had restless legs and the body jerking started back up again. I also have fibromyalgia ( recently diagnosed a couple months ago ). My body bounces around and when I'm sitting I look like a restless child because I'm bouncing up and down and my legs and arms go crazy. Sometimes it's with pain and sometimes not. I have no clue what it is or how to stop it so I can get sleep. i am on pramipexole but now it doesn't even work.

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