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

Thanks

Caroline xx

33 Replies

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  • 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!

  • I've written an update post for you and the others who so kindly replied here.

  • I have every symptom you have, but also my neurologist found i have epilepsy, have had my large intestine removed due to growths, but still dont know why im getting these jerks, i had them during an MRI and was told to stay still, when i told them i couldnt help it, they werent very nice. if anyone finds out why we all suffer with these jerks, please, please, let us know..

  • I'm so sorry that you were treated insensitively by the medical professionals when you had the jerking and shaking during your MRI. They don't seem to realise the damage their ignorant comments and assumptions can do to us, emotionally.

  • The term for such symptoms is Myoclonus. I think you will find considerable information if you search under that term. I would think that Wikipedia, although not the most accurate resource for info sometimes, is a place to start. Then you can look at the list of reference links at the end of that article and do more reading at other more authoritative medical websites. It relates to the fact that our illness causes damage and dysfunctionality in the Central Nervous system.

  • 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.

    xxxzebxxx

  • 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.

    Jackie

  • 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

    Caroline

  • 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.

    Jenna

  • 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.

    Jackie

  • 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

  • No, I have never drunk more than a small glass of wine or whisky once or twice a month. I can tell you that these symptoms are well known among people who have ME/CFS and Fibromyalgia and some other related conditions. They are caused by damage to the nervous system and muscle spasms, etc. They are nothing to do with any addiction. However, if someone is in withdrawal from drugs or alcohol, of course they can have these. Certainly I think most of us understand the difference.

  • 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.

  • I have had a very difficult time with doctors. I don't even try to get help from them unless there is something so important that I must, and it is something they are going to actually be able to deal with like a bladder infection.

    I have actually had some recent help that I wish I had been able to get at the beginning of this illness 15 years ago. I have spent many many hours over the years reading reputable medical websites and research information online. You have to know how to weed out the bogus ones. Anyway, I learned that the difficulty I now have remaining upright is called Orthostatic Intolerance and it can be caused by a number of things. I found information online on the NHS own website about it--which my GPs could not be bothered to learn about. I tried for 3 years to get a referral, after having to do some preliminary tests myself with a blood pressure monitor and following some steps they use to do a first assessment. Then I found a list of doctors who deal with Orthostatic Intolerance and POTS, which is one of the problems that causes it. There was one near me, and finally after being sent for the wrong tests, and knowing they were the wrong ones, as the doctor would not even spend 5 minutes to get accurate information or listen to what I was saying to her, I saw another GP and got a referral. I was diagnosed with POTS and a genetic condition called Ehler's Danlos Syndrome. These are commonly found among a significant portion of people who suffer from Fibromyalgia and ME/CFS. More recently, I had saved some money and was able to contact a private doctor who has many years of experience with ME sufferers and Fibromyalgia sufferers. He is known and thought very highly of and I got this info from the ME Association magazine. There is an ME Trust and they have a small bursary fund to help people like me who are severely disabled by these conditions and not getting proper care. He visited me and also diagnosed ME. These are related conditions. They are physical conditions that affect the central nervous system, the autonomic nervous system, and the immune system. We have damage to these systems, and the difficulty with most doctors is that they believe these are psychological problems, or at least in a large part caused by the way we think and things other than the damage to those systems and ongoing difficulty of those systems to function properly.

    I had an episode of severe dizziness and headache and was taken to A&E, then put on a ward for observation for several hours. While there, I started having those jerking and shaking episodes. I had several of them, and they were lasting a few minutes at a time. A visitor sitting across the ward told the nurse, "She's fitting!" The nurse took a few steps in my direction and then just walked out of the room. Nobody said or did anything. When you have Fibromyalgia and POTS and Ehler's Danlos Syndrome on your record, they see Fibromyalgia or ME and the rest of it and they think we are just a nutcase. They believe that whatever symptoms they see are psychological, or else that we are making a big deal out of nothing. I could tell more stories like this, but I am sure most of the people on this forum have experienced this kind of neglect and stigma in some members of the medical community. Not all... but enough of them that it is very hard to get good care.

    There is no cure or very effective treatment for the symptoms. Things are tried. I have been on medication to try to raise my low blood pressure, I am now adding a lot of salt to my daily intake, which is another way of dealing with POTS. For the shaking fits, I have learned that pushing myself, following the ignorant suggestions of GPs who know nothing about my conditions but continue to say things like, "You need to get up and push yourself. You need to move around every 15 minutes," and things like that, are part of the problem. The pain and exhaustion that result from me pushing myself and ignoring symptoms lead to greater buildup of pain in subsequent days and then the shaking and jerking fits, as well as worse IBS and other symptoms.

    When I finally managed a visit from the specialist ME doctor after 15 years of not having a doctor who actually believes that these are real bio-medical conditions, he confirmed that I have it, told me I am doing too much, and that I need to cut my activity/exertion in half by noticing what I have been doing and for how long when I BEGIN to get symptoms that I should stop. Stop then. Don't push. Close my eyes, and lie still, use pillows to cushion my joints and have my knees bent with pillows under them. As much as possible, feel that I am being held and safe and can relax. Then next time I am doing that activity, quit when I am halfway to the point where I felt the symptoms coming on and getting worse.

    It is very hard for me to do this. But it is helping so far. I have a lot to learn. It is particularly hard if you don't have a partner or family member to help you. I live alone and I do get some social care, but there is a lot I can't do that needs doing. Beyond that, I love to read, learn new things, create digital art, have long Skype sessions with family abroad and friends in other countries. All that needs to be done in smaller chunks. Sometimes when I close my eyes to follow doctor's orders, all I can feel is the urgency of the pain, tension, and exhaustion... muscles screaming and cramping, crazy cold and burning and clammy and crushing sensations in my feet all at the same time... and the rest that most of you have felt. But I now have a doctor to at least consult by phone, who has seen me in person and understands these conditions. I will follow his orders and try to trust my own body to tell me what it needs.

    I think we are always going to be steered in the wrong direction if we stop trusting our instincts and the signals from our bodies that something is very wrong and we should not ignore it. I would not have had diagnoses if I had not spent literally several years of digging and reading and learning from other sufferers about these illnesses, then not quitting until I finally got a knowledgeable professional to run appropriate tests and spend the time it takes to properly interview me, examine me, and look at the whole bigger picture.

    We are not well served by GPs who ask us to come in with only one problem or question and then end our visit after 8 minutes. I know that is the standard, but our conditions require an approach that looks at the whole lot of things as they relate to each other, and most of all they require that the doctor has current, accurate knowledge of the research and clinical approaches being used by specialists in these illnesses--not just psychological referrals for exercise and talking therapy.

    I am really glad I finally got what I needed. I will be getting off Pregabalin, which has done little to help my pain, has not helped the shaking episodes, and has caused me to gain two and a half stone since I started taking it in 2011. I think based on my recent sense of what helps and what does not, that the main issue with my pain is inflammation. The specialist will continue to advise by phone appointments and write to my GP, who really can't be bothered to see me, and seems happy to do whatever the specialists suggest. The specialist will also be available to make another home visit if needed in the future.

    I hope the others of you who wrote here 4 years ago and more recently will not give up until you learn what you need and find a specialist who can look at your overall conditions and symptoms, do proper testing, and not just brush you off as mine did for so many years.

    I am so grateful for the online communities and forums, and for dedicated researchers and clinicians all over the world who do conferences and seminars together to raise awareness and understanding of the latest findings in research and treatment protocols.

    I'm grateful for this forum.

  • Hi. My daughter was diagnosed with fibromyalgia about 19 years ago. Over the last 9-10 years she has been having these wild severe body jerks. On occasion they are on the milder side, mostly not though. She can have these jerks sessions (as she calls them) many many times daily. She just saw the neurologist for the results of her EEG and it appears normal. So Myoclonus it is not. The doctor suggested it may be a psychogenesis disorder? The only medication that can slow or sometimes stop these violent jerks (they can last for hours) is taking Ativan which she is only allowed to take 10 pills monthly. Does anyone have similar problems?

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