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involuntary jerking & shaking- anyone exp? I am scared.
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involuntary jerking & shaking- anyone exp? I am scared.

Anyone with FM have involuntary jerking or shaking? This has just started for me. I am waiting for new insurance to get tested for Lupus or MS. I was just curious if anyone else has this? I also have numbness in arms, hands and feet. I also got the strangest rash on my arm yesterday. I don't know whats going wrong with my body!! I feel very alone and scared. I see my Internal Med. doc Thursday, but I am worried...

Any advice or comments are greatly appreciated.

Thanks in advance.
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28 Comments Post a Comment
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Avatar_f_tn

Hi Jennifer,

I know of a guy who has CFS and he has involuntary shaking in one of his legs. If I find any information on this from my website, I'll send it your way.
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P.S. ---- I would consider taking magnesium (I buy the powered), in case you have a deficiency and also consider being tested for lyme disease (if you haven't already).
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172715_tn?1285498090
I too have had some jerking and shacking of the limbs but not very often at all.  Inabillity to control body temperature is another Fibro symptom. There are many that you may not know about but many are also overlapping with other illness' such as Thyroid, MS rtc. Rash could be Lupus but there are skin problems with Fibro too. You should ask for a referal to have an RA take care of you if it turns out that you have Lupus or Fibro. You also must keep up to date on research out there. You will be very much in charge of your body and take notes on what effects you good and bad.  Bring notes to every dr. appt. for them to copy. Don't miss appts. because you may have to collect social security disibillity insurance in the near furture.  I was able to work for 8 years but my back had some more bulging disks and that caused worsening Fibro symptoms and the depression that go with it. Find some video blogs that people with chronic pain or Fibro (I just saw some a few weeks ago.  Let your husband watch the worst ones first.  They aren't too long 3 to 12 minutes long.  Or google for the longest list of Fibro symptoms and leave it in a place that he will see it and have the time to take it all in. If you need help finding it let me know, i'll look for it again.   There is a reason for everything, we may not know why for awhile.  Sincerely Sharon
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I hope you are taking magnesium. I have an article posted on my website called "The Role of Magnesium in Fibromyalgia" --- it was written by Mark London.

Best,

PlateletGal
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Avatar_f_tn
I too have those, but I would definitely get checked for lupus and ms to be for sure. Wish you the best! I'll say a prayer.
Jeannie
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Avatar_f_tn
hi i have m.e for many years and often get jerking. mostly at rest tho. have a full check up tho so they can rule out anything else which they did for me back then. take care
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Avatar_f_tn
hi.  i had involuntary jerking & shaking when i had a b12 deficiency.  especially, at night.  my leg tremored for 3 days one time before i could get my levels up.  i had sensory numbness that felt like thousands of pins on my back.  some people don't have to be on the low range to have these affects.  i get shots, but you can try sublingual (big dose) b12 and see how it makes you feel.  i just read a post paresthesia--vitamin B12 deficiency or MS? in neurology expert forum.  good post.  also, a cal/mag/potsm supplument is a really good idea.  i will have to say that when my anxiety level peaks (fear of not knowing can create anxiety),  i feel the same thing.  hang in there!  just take a deep breath through your nose all the way to the bottom of your lungs and blow it all the way out.  just remember that whatever happens, whatever the diagnosis...it will be ok!  kimpton
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good comment about the videos.  not all men, but some men think that this is a female issue.  if there's a video with a male testimony i have someone that needs to see that!
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543791_tn?1216385377
Any chance you are taking Effexor? I had uncontrolled jerks while taking this medicine and I know it's commonly prescribed
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Avatar_f_tn
I have Fibromyalgia. Just recently diagnosed. Been having terrible jerking,tremors and shaking. Also have inflammation of nerves. Didn't think Fibromyalgia can cause the jerking. Now I'm getting some answers by reading.

Question: I have heat radiating from my skin. Sometimes bad and sometimes it stings. Does anyone experience this with Fibromyalgia? Doc can't figure this one out.
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Avatar_f_tn
Hi,,I get horrible shaking and jerking it usually happens when my bodys at rest like sleeping,,I know my cause is the fibro but also the med I take which is Methadone for the pain,,what meds do you take.
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Avatar_f_tn
I was diagnosed with fibro but had the jerking and shaking (what I call spasms) for almost a year before.  I'd been on Wellbutrin for a long time before that.  I'd also been misdiagnosed by a neuro with very early stages Parkinson's.

Lyrica has the spasms down to a minimum, mostly at night when I'm relaxing.  They were full body head jerking back and forth as the rest of my body flailed as well spasms.  The violence and frequency of the spasms are reduced dramatically.  I'm driving again, sent back the wheelchair, the walker's in the shed and the cane hanging up in my craft room.
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Avatar_f_tn
I have couple of friends who also have tremors and jerking......I always thought it is part of the nero impairment thingy.  I have both ME/CFIDS but never had tremors and jerking.

Just thought I'd add my experience.

Hugs,
Kit
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575823_tn?1217465105
yes i have the shakes too...look like friggin elvis over here. i have fibromyalgia...it used to happen to my mom too...still does....she also has fibromyalgia. we both got it from seperate accidents...mines was a spine trauma last year and hers was a crash that cracked her neck 10 yrs ago. With FMS there is severe muscle fatigue. I was getting upset reading the posts about magnesium, but now I remember that magnesium  helps leg cramps...they recommend it for those charly horses (however u spell it). So to answer your question yes it existsl...will your doctor relate it to your FMS...probably not. I have a thing against neurosurgeons, so I just wont go see one, but if a rhemy already ruled out other autoimmune diseases, then you can be confident this is muscle fatigue related to FMS. Also with FMS you get little or no REM sleep, so your muscles NEVER GET TO REPAIR. Therefore...fatigue, spasms, shakes, etc. Make sense?
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Avatar_m_tn
     I have right arm tremors when I'm not using it. It doesn't interfere with the use of that arm, only when I'm NOT using it.
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Avatar_m_tn
I have been diagnosed with fibromyalgia which is painful and disabiling. It seems know doctor really wants to care for me. I've been referred to Neurologist, Rheumotologist, family care, and now pain management. I has effected my job and I started get tremors in my arms about 4months ago. They have gotten worse over the months I've even been in the ER twice for them. My whole body was shaking so bad my Mom thought I was having a seizure. I also believe my antidepressant increased my tremors by causing worse anxiety. It is a horrible disease and hard to find physicians who understand. All I know is I stopped taken my antidepressant and the shaking got better. I'm still shaking but not nearly as bad.
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1170694_tn?1285101109
I get it allot too, more at night than during the day. My doctor tryed to explane it, but I don't remember exactly what was said. It is frustrating and gets in the way of what little sleep I get, wich ***** becuse I am 16 and want to have energy to do stuff.  But I do know that a change of temp. can be caused by blood vesles tightening in responce to pain. Normaly the reaction is due to bleeding, but the brains signals are off and misinterpret the pain.

As for the muscle spasms, drink Tonic Water, it contains Quinine which helps stop them.
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1245842_tn?1287833651
I also have the spasms, they start when im relaxed in bed, my legs do little jerks, and my knees, then i'll have a couple in my buttocks, sometimes my arms jerk too, when my head jerkes,it feels like its coming from my neck, this goes on for hrs.
Ive been suffering with FMA for 3yrs but was only diagnoised June 09, so im still quite new to it really. the only way im learning about this condition is through this MedHelp Site because my doctors are oxoxox. its really good to know im not alone, but i am sorry that everybody who suffers from FMA are in so much extreme pain, this condition is THE PITS!
It keeps disabling me, i have injections every 4mnth, im not too bad for 4wks after, but then 3 to 4mnth im crippled with the pain. Sorry for going on, ive just realised. sorry.
Thankyou!
Jax(",)xXx
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Avatar_m_tn
I have FM and have researched for a long time my symptoms and haven't hit on anyone similar to me.  I am wondering if I have something on top of having the Fibro. I can't walk for long periods of time.  My legs become extremely sore and the pain burns deep into my upper thigh tissue.  Any light touching of my upper thigh (which makes me thinks it's the FM) is excruciating.  The part I wonder about is the extreme leg weakness that follows.  I sometimes can't even feel my upper thighs.  It's as if they disappeared and I will fall over.  The muscles just evaporated.  If it gets too bad (all I did was run a few errands last night that required walking) I can feel an electrical impulse run through my body and the legs begin to jerk while I sit on the couch and watch t.v.  Anybody out there have anything similar?
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Avatar_f_tn
I have jerking and twitching most days. Its a symptom that ive had for a few months now. I keep hoping my symptoms will stop getting worse, so i can finally accept i have this life changing syndrome.
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I have all those symptoms except the rash but i understand thats normal for fm too. I know how you feel. I have a huge fam n most of them dont understand. I feel like no one believes me :-( but im told this is normal too. Im still waiting for my symptoms to peak, (for want of a better word) av least that way i'll be able to begin to accept i have this life changing syndrome ..
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I have had fibro for 30 years, diagnosed 22 years ago, and recently confirmed.  I also am jerking badly, and it looks very much like full body seizures at times. They seemed to ease for awhile, and just started up a few days ago, and now thanks to reading this realized I am out of magnesium.  I also tend to forget a lot.  I seriously  think that the magnesium helped and am going to get some today.  I'll post if it helps.  I also was taking B12, but not as diligently, as I should have.  

Thank you for this topic.
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358486_tn?1294779988
Hello there, I see u have had many other comments. I too have started jerking about  months ago...1st started small jolts as i was drifting off to sleep....then kept progressing to stronger jolts...then to whole groups of muscles,,,,then to jerkin shoulders legs, feet,hips off the bed even...about 30 secs or so between jerks becomining more & more bothersome! I take ambiem at night and it started to get so bad that it was was even causing me problems to stay asleep on it! then a couple of wks ago it started happening every time i lay down at all....anytime of day...not drifting off..just lying down...within about 30-40 sec after i lye back, they start..from my neck to my feet and I just start floppin like a fish outta water.  now this is happenin while sitting up this wk too. Do not feel Alone in bein Afraid...I was 2!! But I saw my Rheumy 2day....He is Wonderful, I just love him 2 death!!  he said this is definitely 99%  extreme Fibro, but he did want me to see a neurologist just 2 make sure it wasn't possible that i could have a movement disorder too, then when that omes bak neg...he'll say it's 100% EXTREME FIBRO   What meds do u take? in fat...anyone reading...what meds do u take?  just started topamax n valium   best wishes Brandy :)
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HI,I HAVE FIBROMYALGIA ALSO THEY HAVE TRIED ME ON CYMBALTA AND FLEXRIL DIDN'T WORK SO THEM CYMBALTA AND SOMA WORKED FOR A WHILE THEN THE STINGING,BURNING,NUMBNESS AND GOT WORSE ABOUT 5  MONTHS AGO SO THEY TRIED ADDING LYRICA DIDN'T WORK SO STOPPED IT AND THEY ADDED SAVELLA ,OH I WAS SO SICK COULDN'T GET OUT OF BED SO HE ADDED PENAGRAN TO IT STILL COULDN'T GET OUT OF BED SO I NOW HAVE MOVED AND ABOUT A MONTH AGO STARTED THE TREMORS AT FIRST I WAS EVERY NOW AND THENBUT NOW IT'S  ALL THE TIME I SEEN A NEW NEUROLOGIST AND I STAYED ON THE CYMBALTA,SOMA AND HE HAS ADDED GABAPENTIN I TAKE 2 OF THOSE 3 TIMES A DAY ALONG WITH MY OTHER MEDICINE WORKING SO SO HELPS THE TREMORS BUT STILL HAVE NUMBNESS,PAIN AND BURNING,IT IS SCARY GABAPENTIN IS FOR SEIZURES MY AUNT JUST DIED FROM SEIZURES HES WAITING ON MY MEDICAL RECORDS BEFORE HE CAN TELL WHAT IS REALLY GOING ON I ALSO HAVE NARROWING OF THE SPINAL CANAL SO I AM WAITING TO SEE WHERE THIS GOES NEXT.
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3065262_tn?1342126161
Hi Jennifer, I have all your symtoms (symptoms) plus 100 more... All I can say is my muscles started jerking and flaring when I went on the Flexeril and my doc said stick to the med as it was my muscles actually unknotting from Fibro. Please I know you feel alone, darn my own husband left as he could not take me with my illness anymore, but I have found we are NOT alone. Somewhere out there someone else is feeling exactly like you. Are you also on pain killers for pain?
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3065262_tn?1342126161
You can say that. My husband said it was all in my head and to " Will " it away. Then he walked out .
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Avatar_n_tn
I get the shakes ALOT  I usuallt take clonazepam and that seems to stopit.  i used to wake up with them every morning --before I had all this pain and was in the middle of a nervous breakdown.  Now, I think it "may" be caused by a stimulant that i take to help counteract the effects of the norco and soma I take for my pain--originally I was given it for ADD---which I'm not sure I really have---you know what a fibro-type fog can do to your brain.  I also had severe depression and the psych thought the vyvanse would help the depression.  anyway, i did not get the shakes in the past from it.  but, last year I tried a new anti-depressant, and I always have trouble with anti-depressants.  It gave me the shakes really bad----and I continue to get them ever since---and I only tried the anti-depressant for less than a week and at less than the starting dosage.

My body has always reacted strangly to meds.  The clonazepam seems to work for me, plus it helps with anxiety that I still get.  I'm taking a different route to try and help my depression.

I've had the muscle jerks--but they've never been a major problem.
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Avatar_f_tn
Your descriptions of your jerking are exactly like mine.  Mine is a seizure-like condition called Myoclonus.  I take Klonopin or clonazepam, like kevieb above and it takes care of it.  That medication is the primary medication known to help that condition.  I would not be able to sleep otherwise.  
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