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    Old 04-30-2009, 10:56 AM   #1
    robochick
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    Painfull & sometimes violent twitches!

    Hi there all,
    My history is I broke my back in 4 places nearly 11 years ago, and have suffered from chronic back pain ever since then, over the years I have tried every medication avalible also numerous injections. Since breaking my back I've always had really painfully and sometimes violent twiches coming from my back and legs. In sept 08 I had my 1st scs trial which didn't work because the electrode was placed in the wrong place, so it was taken out, so on 27th april 09 I had a 2nd scs trial and my twitches are hurrendous since I've had my last scs trial, (this may be cause I've got 2 lots of stitches in my back and am still only 4 days after my operation) so I'm wondering if this is a common side effect for people with chronic back pain or is it something to do with breaking my back, or is it something else??? I'm goin to the doctors tomorrow to ask his advice about the possibility of getting some muscle relaxers, but I'd like some advise from other chronic pain sufferers. (if there is anybody out there who has these crazy, very annoying twitches)
    The twitches happen at any time during the day, buy they get more frequent and more painfull at night time, when I'm (trying) to relax & when I'm (trying) to get to sleep and often keep me awake, (its costing me a fortune, having to keep buying new glasses and mugs because I kick them off the coffee table when I'm laid on the couch trying to ease my back pain).
    I had a really bad, painfull twiching night last night, and couldn't get to sleep for hours because when I twitch it freightens and surprised me so it takes a while for my heart to stop beating so fast. Last night I felt like I wanted someone to lie on top of me to stop the twitching and stop my legs and head from twitching all over the place. Does anybody else have these issues, your experiences would be much appreciated and could stop me worrying about them so much ??? Please, please xxx

     
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    Old 04-30-2009, 12:03 PM   #2
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    Re: Painfull & sometimes violent twitches!

    Robochick,

    I have had leg spasms/jerking similar to what you are explaining. I was given several explanations from various doctors, including a pinched nerve, spinal myoclonus, and it being psychological (yeah, right!). I personally believe it was due to a pinched nerve, and an upright MRI recently found that I have a tethered nerve at L4/L5. I somehow injured my back over a year ago and the spasms/jerking started about 3 weeks later, and returned after having surgery last August.

    My leg spasms/jerking occurred whenever I tried to sit or lay down. My entire left leg would go into violent yet very quick spasms/jerks every few seconds. It was terrible trying to get to sleep at night - sometimes it would take hours to subside enough to get to sleep, and would I would wake up to my leg jerking around and would have to change positions. It would not happen when I was standing - I just wasn't able to figure out how to stand for 24 hours a day. I was able to put on a pretty good freak show.

    I had a doctor put me on Baclofen and it has reduced the spasms/jerking by about 95%. I'll be having another surgery soon, and I'm not sure what will happen when they try to take me off the Baclofen. Baclofen is an antispasmodic and muscle relaxer that is often used for MS patients.

    Good luck!

     
    Old 05-03-2009, 11:23 AM   #3
    robochick
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    Re: Painfull & sometimes violent twitches!

    Quote:
    Originally Posted by brendaks1 View Post
    Robochick,

    I have had leg spasms/jerking similar to what you are explaining. I was given several explanations from various doctors, including a pinched nerve, spinal myoclonus, and it being psychological (yeah, right!). I personally believe it was due to a pinched nerve, and an upright MRI recently found that I have a tethered nerve at L4/L5. I somehow injured my back over a year ago and the spasms/jerking started about 3 weeks later, and returned after having surgery last August.

    My leg spasms/jerking occurred whenever I tried to sit or lay down. My entire left leg would go into violent yet very quick spasms/jerks every few seconds. It was terrible trying to get to sleep at night - sometimes it would take hours to subside enough to get to sleep, and would I would wake up to my leg jerking around and would have to change positions. It would not happen when I was standing - I just wasn't able to figure out how to stand for 24 hours a day. I was able to put on a pretty good freak show.

    I had a doctor put me on Baclofen and it has reduced the spasms/jerking by about 95%. I'll be having another surgery soon, and I'm not sure what will happen when they try to take me off the Baclofen. Baclofen is an antispasmodic and muscle relaxer that is often used for MS patients.

    Good luck!
    Hello again,

    Thank you so much for reply to my thread about the twitching subject.
    I went to see me G.P on Thursday about it & I explained what happens, when it happens, that it wakes me & startles me during the night & it hurts also that I keep kicking glass's off the coffee table if I relax or fall asleep on the couch!! His professional opition was to buy plastic glass's !!! just how many years do G.P's have to spend at college & university to qualify to be G.P's???? Its really making me wonder!!!!
    When he had finished his fit of laughter he then said that it could be a side effect of the combination of painkillers, anti-depressants & beta blockers that I take daily. But before I went to see my G.P, I searched the internet for side effects of all the tablets and patches that I use & not one of them said of twitching/spasms as being a side effect. So I don't think I'll take my G.Ps advice! (I wonder why?) because I'm going the see my pain management doctor on Tuesday about my scs electrode being in the wrong place & hopefully he won't laugh at me & may even take me seriously??
    I'm continueing to research my medication & to get as much information about the twitches as possible so that I know as much as I can for when I go to see them on Thursday.
    Thank-you for your reply & I thought you'd enjoy a laugh at my G.P's very strange sense of humour, take care xxxx

     
    Old 05-04-2009, 08:06 AM   #4
    feelbad
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    Re: Painfull & sometimes violent twitches!

    these sound alot more than mere twitches. do you have a copy of your MRI(PRE SURGERY) that was done that you could just type out the summary at the end part for us? i am assuming here that if you actually broke your back that you also had/have some level of actual spinal cord damage or affectation as well? just knowing what was found upon that MRI and how much that cord was affected would tell alot about justwhat your symptoms would be.

    when the cord becomes involved and or the motor nerves as well, really insane things can happen with our legs, trust me on that one. just a couple things are myelopathy and hyperreflexia? are you exhibiting any other more 'hyper" types of reactions like how is your startle reflex, more than the norm?

    if you could actually just type out that pre surgery MRI summary(or what is going on more in the present type of MRI), it really could tell alot. i have a spinal cord injury myself along with a huge mess up in my c spine as well. i have some big time spasticity. the upper motor neurons can also effect the legs too, these are within the cord itself. it creates whats called clonus. any info you can provide at the injury levels would help tons. marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 05-04-2009, 11:31 AM   #5
    robochick
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    Re: Painfull & sometimes violent twitches!

    Quote:
    Originally Posted by feelbad View Post
    these sound alot more than mere twitches. do you have a copy of your MRI(PRE SURGERY) that was done that you could just type out the summary at the end part for us? i am assuming here that if you actually broke your back that you also had/have some level of actual spinal cord damage or affectation as well? just knowing what was found upon that MRI and how much that cord was affected would tell alot about justwhat your symptoms would be.

    when the cord becomes involved and or the motor nerves as well, really insane things can happen with our legs, trust me on that one. just a couple things are myelopathy and hyperreflexia? are you exhibiting any other more 'hyper" types of reactions like how is your startle reflex, more than the norm?

    if you could actually just type out that pre surgery MRI summary(or what is going on more in the present type of MRI), it really could tell alot. i have a spinal cord injury myself along with a huge mess up in my c spine as well. i have some big time spasticity. the upper motor neurons can also effect the legs too, these are within the cord itself. it creates whats called clonus. any info you can provide at the injury levels would help tons. marcia

    Hi Marcia,

    Thank-you so much for your reply, when I broke my back nearly 11 years ago they did a MRI scan & it showed that I had no spinal cord damage, just 4 compression fractures of the vertrebra. I had a MRI done before my 1st scs trial but when I went back to see my pain management doctor he didn't mention anything about it, so I just presumed everything was ok & normal (or as normal as broken vertebrae can look) lol I'm going back to see him tomorrow afternoon so I'll ask him what my MRI scan shows & ask for a copy of the summery as well so I can let you know.
    I don't know what a Startle Reflex is so I can't tell you what thats like! What is it?? Doctors over here don't tell you much, so most of the time we have to rely on the internet or boards like this to find out whats going on! Also what is Clonus?
    Oh brill, my wonderfull partner has found a old MRI scan summery, its from back in October 1999, so I don't know if its too old to show you anything, this might be long but I'll just type out everything so I don't miss anything out: Here goes, are you sitting comfortly??
    TECHNIQUES:
    T1W & T2W sagittal images were made through the spine from the posterior fossa to the upper lumbar region, also T1W & T2W sagittal images through the lumboscral spine & thoraco-lumber junction. A block of T2W axial images were made from the lower border of L2 to the upper sacrum.
    FINDINGS:
    The vertebrae are in normal alignment. There is wedging of multiple vertebrae in the upper thoracic spine from T2-T5. T5 appears to be the most severely compressed. However the intervertebral discs appear intact & there is no evidence of prolapse disc or other material into the spinal canal. The spinal cord appears normal throughout its length and there is amble CSF around it. T2 sagittal images suggest a little clumping of nerve roots in the lower lumbar region but apart from this there is no further evidence of arachnoiditis. The discs appear normal. The spinal canal is adequate in its diameters and there is no evidence of nerve root compression.
    Thats all folks, it doesn't mean anything at all to me, I really appreciate this & I'll let you know tomorrow what my newest (2008) MRI scan says.
    Thank-you, speak soon xx

     
    Old 05-13-2009, 01:42 PM   #6
    robochick
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    Re: Painfull & sometimes violent twitches!

    Quote:
    Originally Posted by feelbad View Post
    these sound alot more than mere twitches. do you have a copy of your MRI(PRE SURGERY) that was done that you could just type out the summary at the end part for us? i am assuming here that if you actually broke your back that you also had/have some level of actual spinal cord damage or affectation as well? just knowing what was found upon that MRI and how much that cord was affected would tell alot about justwhat your symptoms would be.

    when the cord becomes involved and or the motor nerves as well, really insane things can happen with our legs, trust me on that one. just a couple things are myelopathy and hyperreflexia? are you exhibiting any other more 'hyper" types of reactions like how is your startle reflex, more than the norm?

    if you could actually just type out that pre surgery MRI summary(or what is going on more in the present type of MRI), it really could tell alot. i have a spinal cord injury myself along with a huge mess up in my c spine as well. i have some big time spasticity. the upper motor neurons can also effect the legs too, these are within the cord itself. it creates whats called clonus. any info you can provide at the injury levels would help tons. marcia
    Hi Marcia,

    I have been doing lots of research into these twitches that we discussed a few weeks again & I do have some of the symptoms of arachnoiditis & some of the symptoms of spinal myoclonus, who do I talk to about this? my G.P or my pain management doctor?
    I have requested a copy of my last MRI scan summery from my pain clinic so hopefully they won't forget about it.
    With the arachnoiditis, the diognosis is a history of epidurals, jections, brain trauma, back trauma, I had 3 years of having epidruals & injections every 4-6 months, I have also had a back trauma. The symptoms of this are back pain, sexual dysfunction, profuse sweating including night sweats, burning sensation, throbbing & sharp pains in the lower back, depression, all of which I have & the apperance on an MRI scan is of nerve root clumping, which showed up on my MRI scan done back in 1999. I also have been looking into startle reflex & I do have a very over-exagerated startle reflex.
    I don't think its clonus as one of the symptoms of this are of the foot being sharply bent upwards, towards the thigh, and I don't have that.
    Do you know anything about these 3 conditions? It's quite confusing really.
    Any info or advice would be much appreciated.
    Take care & I hope to hear from you soon xx

     
    Old 05-13-2009, 01:48 PM   #7
    robochick
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    Re: Painfull & sometimes violent twitches!

    Quote:
    Originally Posted by brendaks1 View Post
    Robochick,

    I have had leg spasms/jerking similar to what you are explaining. I was given several explanations from various doctors, including a pinched nerve, spinal myoclonus, and it being psychological (yeah, right!). I personally believe it was due to a pinched nerve, and an upright MRI recently found that I have a tethered nerve at L4/L5. I somehow injured my back over a year ago and the spasms/jerking started about 3 weeks later, and returned after having surgery last August.

    My leg spasms/jerking occurred whenever I tried to sit or lay down. My entire left leg would go into violent yet very quick spasms/jerks every few seconds. It was terrible trying to get to sleep at night - sometimes it would take hours to subside enough to get to sleep, and would I would wake up to my leg jerking around and would have to change positions. It would not happen when I was standing - I just wasn't able to figure out how to stand for 24 hours a day. I was able to put on a pretty good freak show.

    I had a doctor put me on Baclofen and it has reduced the spasms/jerking by about 95%. I'll be having another surgery soon, and I'm not sure what will happen when they try to take me off the Baclofen. Baclofen is an antispasmodic and muscle relaxer that is often used for MS patients.

    Good luck!
    Hello again,
    When your doctor put you on Baclofen, did he do any tests first to find out why you where having the spasms/jerks. Did they find out what the cause was.
    I'm still doing research into my twitches, so I can take it to my Doctor so they can't fob me off anymore, I want my twitches and night sweats sorting out because they are very distressing, especially having to get up out of bed shivering 2-3 times per night to change my night cloths, because they will be dripping wet, this has been going on for years now and my Doctors response to buy plastic cups didn't help in my frustration about getting this sorted out.
    Any information would be much appreciated, take care & I hope to hear from you soon xx

     
    Old 05-13-2009, 04:37 PM   #8
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    Re: Painfull & sometimes violent twitches!

    Robochick,

    Before I was put on Baclofen, I had an EMG, standard MRI's of my entire spine, EMG, CT scan of the brain, lumbar myelogram, and EEG. These all came back normal except for a lumbar MRI showing a small recurrant herniation at L4/L5.

    The doctor that put me on Baclofen is a pain management doctor and he observed my violent leg spasms and said they were clearly due to a squished nerve. At a later date he ordered an upright MRI that I sat in and a discogram, and these both confirmed that the innocent-looking reherniation I had at L4/L5 was bluging way out and tethering/severely constricting my nerve roots.

    There are different causes for spasms/jerking of a limb. At one point I was told by a neurologist that he thought I had ALS or MS because the spasms/jerking was so violent and I had hyperactive reflexes in my knee. When doctors were trying to test my knee reflexes I would practically fall right off the examination table from the violent jerks!

    I do not have any night sweats so this would definitely be a difference between us, and your night sweats may or not be related to your twitches.

    If you are not getting satisfactory responses from the doctors you are seeing, I would suggest seeing other doctors for 2nd or 3rd opinions.

    Good luck!

     
    Old 05-14-2009, 08:42 AM   #9
    feelbad
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    Re: Painfull & sometimes violent twitches!

    your startle reflex is pretty basically just how 'jumpy'/reactive you are when like you hear a loud noise or someone comes up behind you and scares the heck out of you, or startles you? how does your body react to those stimuli? OVERLY exagerated or normally? if youy also just tap your knee(right below your kneecap area) with like the handle of a butter knife, like they use that little hammer in the docs office? are your 'kicks" too much or slow like normal? they should just kind of 'bounce' slightly, not overly kick out?

    the thing about your previous MRI that shows no cord compromise? it does appear to show some level of too many nerve roots all clumped and not more spread out like they should be at the thorasic level, i cannot remeber off hand what i just read about levels(geez)? also,if the actual broken areas were never actually fixed properly they can migrate to the cord too over time. if this happened that far back, honestly, anything is possible to have going on now. its the time/age thing we are dealing with here.

    hopefully that newer MRI, hopefully done with and without a contrasting agent(it just picks up a bit more of the more usually hidden type findings with it)will give you some answers. clonus actually shows itself when there is some level of actual upper motor neuron affectation to some degree(which would include that cord area). i also have this in my more spastic leg from the cord damage too. its something that neuros check for in the ankle. its a type of reactionary thing that just happens when the ankle area gets stimulated, but it does tell alot about the actual cord involvment. please keep us posted on what the new MRI states,K? marcia
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 05-15-2009, 03:12 AM   #10
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    Re: Painfull & sometimes violent twitches!

    Quote:
    Originally Posted by feelbad View Post
    your startle reflex is pretty basically just how 'jumpy'/reactive you are when like you hear a loud noise or someone comes up behind you and scares the heck out of you, or startles you? how does your body react to those stimuli? OVERLY exagerated or normally? if youy also just tap your knee(right below your kneecap area) with like the handle of a butter knife, like they use that little hammer in the docs office? are your 'kicks" too much or slow like normal? they should just kind of 'bounce' slightly, not overly kick out?

    the thing about your previous MRI that shows no cord compromise? it does appear to show some level of too many nerve roots all clumped and not more spread out like they should be at the thorasic level, i cannot remeber off hand what i just read about levels(geez)? also,if the actual broken areas were never actually fixed properly they can migrate to the cord too over time. if this happened that far back, honestly, anything is possible to have going on now. its the time/age thing we are dealing with here.

    hopefully that newer MRI, hopefully done with and without a contrasting agent(it just picks up a bit more of the more usually hidden type findings with it)will give you some answers. clonus actually shows itself when there is some level of actual upper motor neuron affectation to some degree(which would include that cord area). i also have this in my more spastic leg from the cord damage too. its something that neuros check for in the ankle. its a type of reactionary thing that just happens when the ankle area gets stimulated, but it does tell alot about the actual cord involvment. please keep us posted on what the new MRI states,K? marcia
    Hi marcia.

    Wow marcia, thank you so much for this information, I'm learning more about my back on this board than the doctors have told me over the past 11 years, I can't thank you enough.

    My startle reflex is so bad that at home in every door way I have wind chimes above the doors so that I can hear people moving around the house, when they chime I can hear where people are, so they can't walk into a room & nearly give me a heart attack. I've always thought it was strange that I was so easily startled & scared & wondered why it takes time for me to get over it & for my heart to stop beating out of my chest, I just thought I was being a wimp. So I'd definatly say that I have over exagerated startle reflexs.

    I tapped my knee like you said like they do at the doctors & they do kinda kick out fast & a bit violently, (I nearly kicked my poor little dogs head off while she was trying to find out what I was doing with her hair brush, LOL) I've tested my partners knee in the same way & my partners knee just slowly comes up then back down again, so there is definatly some significant difference between mine & my healthy partners knee reaction

    About 9 years ago when I say my first pain management doctor he explained to me the best he could, he described that the vertebraes that where broken, where compression fractures & he descripbed an individual vertebrae as a cardboard box, before they where broken you could stand on the cardboard box it would hold somebodys weight, but now he says that if somebody stood on the box it would collapse around my spinal cord, because once vertebrae is broken they are never as strong as they where pre-break.

    Also what does it mean where you said that I've got too many nerve roots all clumped and not more spread out like they should be at the thorasic level? Most of my pain & the worst pain is in my thorasic level, which comes through to my chest as chest pain as well.

    I've been reading through all my medical notes from the first pain clinic that I went to for 10 years & I looked each medical word up that I didn't know the meaning of, I looked them all up on the internet & I can't beleave how many problems & long term effect that can happen after having epidural & trigger point injections, I had 9 lots of 18 injections over the years, so I dread to think what effects that has had on my back & spine. On one of the websites it says that too many injections in the back can cause a build up of scar tissue on the spinal cord so I guess that could be why they couldn't get that 2nd electrode in on my last scs trial! What do you think? I wish I'd of known all the risks before having them done I'm a bit scared now after reading all this.

    A few medical term names came up in my medical records of things that my 1st pain management doctor said about my pain in my medical records & I was wondering if you knew anything about these conditions? I've looked them all up on the internet but I don't know how accurate & reliable this information is, so if you have any information I would love to hear it.
    wedging of the thoracic vertebrae
    canal stenosis
    myelopathy
    myofascial pain

    I'm determined to find out as much as I can about where my pain is coming from for my next visit to my pain management doctor.

    Thank you so much for your advice & information, hope we can speak soon, I hope your as well as circumstances allow, take care of yourself xx

    Last edited by robochick; 05-15-2009 at 02:59 PM. Reason: found more information

     
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