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Restless Leg Syndrome Message Board

  • I have the "Jerks"

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    Old 11-15-2004, 11:27 AM   #1
    Rrector
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    Question I have the "Jerks"

    My doctor seemed to think I might have Restless Leg Syndrome, but I have my doubts. I thought I'd see what people on this forum thought. I have Chronic pain and have been on opiate pain medication for over four years now. I am now having full body jerks or twitches while I sleep. They are sometimes quite violent according to my wife, that's why I call them jerks. I have been on Hydrocodone, Oxycontin. Oxycodone, Duragesic patches, and now I'm on Methadone, 180 mgs per day. Can anyone tell me if they think the body jerks I experience could be caused by the medication? I have not experienced them before I went on the Meth. Any help you can give me with this would be really appreciated.

     
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    Old 11-15-2004, 10:57 PM   #2
    Rach18
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    Re: I have the "Jerks"

    How long have you been taking methadone? I was addicted to methadone for about 2 1/2 years due to a doctor writing me a script each month for back pain. I experienced jerks like you described but only when I was weaning myself down from 10-20 mg a day down to half that amount. 180mg is A LOT of methadone. I understand you have chronic pain. Have you lowered your dose lately? Or do you take 180mg a day everyday? maybe that is why because I had SEVERE leg cramps/jerks etc. when I was coming off/withdrawling from methadone. If you are not, then I don't have any advice other than to ask him to taper you down to a lower daily dose and see if over time that helps. maybe you are getting to much of the drug for your own good. Best of Luck to you, Rach

     
    Old 11-17-2004, 12:43 PM   #3
    momofsix
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    Re: I have the "Jerks"

    I started having exactly what you're describing sometime after I had been on oxycontin for a few months and all during the time I was on the duragesic patch. I, too, never experienced anything like it before. They have abated quite a bit since I have come off the narcotics, but I still do have some trouble at night and now suffer from chronic insomnia.

     
    Old 11-21-2004, 01:20 PM   #4
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    Re: I have the "Jerks"

    Quote:
    Originally Posted by Director
    . . . I am now having full body jerks or twitches while I sleep. They are sometimes quite violent according to my wife, that's why I call them jerks . . .
    How often does this happen? Once a week? Once a night? Several times every night?

     
    Old 11-24-2004, 05:10 PM   #5
    Streetcar
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    Re: I have the "Jerks"

    Hey Director,

    OPiates can definetly cause PLMD ("the jerks") and RLS. I had RLS before I became a CP sufferer and was taking MIRAPEX 1Mg nightly for them. Dr started me of at .125Mg but didn't really get any relief until I got to .5Mg nightly, right before bedtime. Finally found that by taking .5mg one night and then 1mg the next and kept alternating that way, the RLS and PLMD was gone. RLS went away for awhile about a year and then returned after starting on Mscontin. That's when I went back to taking the MIRAPEX and now I don't have nearly the problem that I did. I could probably get rid of them altogether by uping the dose to 1.5mg but so far it's isn't bad enough to mess with.

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    Old 12-08-2004, 10:56 AM   #6
    Rrector
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    Arrow Re: I have the "Jerks"

    Sorry I'm so late answering your questions, but with the holidays there's a lot going on with shopping, etc.

    I have the jerks every night and several times through out the night. Some nights are better than others and recently I have woken myself with them. The doctor has me on Klonopin (for a long time) and he tried Mirapex, but the Mirapex just made them worse. At least that is what my wife said.

    I have a doctors appointment next week, and I have some questions I need to ask him. I still believe all of this is caused or brought on by the Methadone I take for chronic pain caused by IBS and neuralgea pain from lung surgery I had two years ago. When I asked him about the jerking before is when he said it most likely is Restless Leg Syndrome. It may be, but I get no relief from the medication for RLS. If anyone has any thoughts or opinions about this, I would appreciate you posting them before I see my doc on 12/13. Thanks.

     
    Old 12-27-2004, 09:40 PM   #7
    amgoingtoheal
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    Re: I have the "Jerks"

    Director,
    Do you have pain in your body too? I'd like to know if I have RLS too. People always comment on how my leg bounces up and down all day long (like a nervous twitching), and I have been feeling my muscles ache and jerk more often lately (about every few minutes. I'm worried it could be something big, but have no idea where to look for answers. I don't sleep well either and have a Fibromyalgia and CFIDS, so I know they contribute to all of this. I just want to get help like you! Any suggestions on medications to take? Is this RLS?

     
    Old 12-29-2004, 02:01 PM   #8
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    Re: I have the "Jerks"

    Amgoingtoheal,
    It could be you have RLS, but I doubt it. When I have it, my whole body will jerk, sometimes quite violently. I will wake up from it occasionally, but what I'm relaying mainly comes from what my wife tells me. It gets so bad at times, I have to go sleep in another bedroom so she can get some sleep. I'm disabled, but she's still working.

    My pain (and reasons for disablility) come from Irritable Bowel Syndrome and neuralgea pain from a lung surgery for tumors two years ago. Both conditions are quite painful and I take Methadone for the pain I'm also on several other meds for the conditions. There are 12 total. You said you don't sleep well. I don't either, without medications. My sleep difficulties come mostly from the pain. I do take Ambein, Klonopin, Elavil and Gabitril at bedtime, They prescribe mainly two meds for Restless Leg syndrome. These are Klonopin (I take 2 mg) and Mirapex, which didn't seem to work for me.

    If you have any further questions concerning RLS, please don't hesitate in writing a post. I'd be glad to answer any questions, if I can.

     
    Old 12-29-2004, 10:26 PM   #9
    amgoingtoheal
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    Re: I have the "Jerks"

    Hi Director-
    Thanks for your response. I'm sorry to hear you have such violent jerks. Even my mild ones feel strange to me, I can only imagine whole body jerks. Is it a neurological condition when you have muscle twitches a lot? What about pain, is there pain associated with RLS? I think it has to do with not sleeping well, have you gone to a sleep clinic yet? My good friend went to one, and they gave her a CPAP machine (I think thats the name) to help get oxygen to her muscles when she sleeps. She said (and so do all the other posts on it) that it is the best thing that has ever happened to her. It's a hard thing to get used to having on your face at nighttime, but I suppose it could be worth it. I take ambien, and God knows I that when I don't have that to put me to sleep that I am not good the next few days.
    Do you think it's normal to have muscles jerk the way they do and not have a condition like RLS? Have you heard of any other illnesses that could cause this? I'd just like some answers...thanks so much and God Bless you!

     
    Old 12-30-2004, 04:10 PM   #10
    Rrector
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    Re: I have the "Jerks"

    Amgoingtoheal,
    Hi, I'll try to answer a couple of your questions, if I can. The doctors, two of them told me they thought it was RLS. I have never been bothered with anything even close to this until I went on Methadone for my chronic pain. Although I am on a very high dose (180 mg a day), I was on high doses of Oxycontin too and didn't have this problem. I was taking 160 mg TID of the Oxy with no problems, except for the rapid tolerance factor. I have brought up this fact a couple times and the docs don't seem to eager to switch me to something else. I have even looked into going to Morphine or Fentynal through a pump. In fact I was even accepted into the program, but decided at the last minute to not do it. It would have meant considerable driving distance (it's not in this state) and if anything went wrong, the doctor would be quite a distance away.

    I have not looked into a sleep lab, although there are two here, mainly because I really don't believe I have true sleep apnea and besides, I'm not to eager to sleep with a full face mask. There doesn't seem to be any pain associated with my condition. This could be due to the meds I take at bedtime. Also, I rarely wake when I have them. My wife will tell me the next day, or like I said before, sometimes she will wake me and ask that I go to another bedroom for the rest of the night. Although neither of us likes this arrangement, at least it affords her the ability to get some sleep.

    I hope I've answered some of your questions. If not, let me know.

     
    Old 01-25-2005, 12:28 PM   #11
    Jumpylegs
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    Re: I have the "Jerks"

    Mirapex rules!!

     
    Old 01-27-2005, 04:18 PM   #12
    Rrector
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    Re: I have the "Jerks"

    Not for me! According to my wife, I was worse when I took it. I still take the 2 mg. of Klonopin though, but it doesn't seem to help much.

     
    Old 01-27-2005, 07:23 PM   #13
    rlslifer
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    Re: I have the "Jerks"

    Hi Director,
    There are many medications that can make RLS worse. If your moving that much at night, you may have PLMD as well as RLS. Many people report that a spouse or partner suffer far worse from the effects of Periodic Limb Movement Disorder than the person who has it. In this case, 2 things ............
    1. A memory foam mattress might help cut down the movement your wife feels when your asleep and doing bed gymanastics. It might even feel good for you.

    2. You really may get a sleep study. It's not just about sleep apnea. You may benefit from knowing how deep you sleep. If your in chronic pain you may never fully fall into a deep sleep. This doesn't help you heal your body or rest for the next day. They can find out many things with a good sleep study.
    I can completely understand the pain issues.
    My RLS is painful and has been most of my life. I was on Mirapex for almost 2-3 yrs. It worked for a little while. Then the doc. would need to up the dose. It went this way until I started on a small dose of Percodan. I was surprised to Streetcar say that it causes RLS. I had never heard that. In fact, many of the RLSers I speak with that have tried it for one reason or another said it helped, opiates that is. Learn something new everyday.
    RLS is one of those crazy disorders where everyone is different.
    For instance, if you have a genetic link to the disorder the treatment can be completely different to start with. For some it's medication induced, so a change in medicine is all that is needed.
    Even with that, what I've learned is that everyone of us is different in symptoms (or the details) and the treatments. It's such a trial and error process. Not to mention that treatments may have time limits for some. There are many people that take "drug Holidays" and use something different for a short period of time, then go back to a regular treatment. It's a shame there is not one answer for all of us, maybe someday.

     
    Old 02-14-2005, 11:53 AM   #14
    scoobydooresto
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    Unhappy Re: I have the "Jerks"

    This really isn't a reply its more of a question,

    I have for several years now been woken up out of sleep by horrific leg cramps in the lower half of my legs, the calf area, and now when i find I am overtired my legs will jerk without my control.,..... is this possibly rls? I can't get any doctors to take me serious not to mention tell me since i am female its in my head because the twitching really bothers me the most. I can be driving a car and it will happen sometimes, or just out of the blue. dunno what to do anymore

     
    Old 02-15-2005, 06:33 PM   #15
    contractorman35
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    Lightbulb Re: I have the "Jerks"

    Quote:
    Originally Posted by Director
    My doctor seemed to think I might have Restless Leg Syndrome, but I have my doubts. I thought I'd see what people on this forum thought. I have Chronic pain and have been on opiate pain medication for over four years now. I am now having full body jerks or twitches while I sleep. They are sometimes quite violent according to my wife, that's why I call them jerks. I have been on Hydrocodone, Oxycontin. Oxycodone, Duragesic patches, and now I'm on Methadone, 180 mgs per day. Can anyone tell me if they think the body jerks I experience could be caused by the medication? I have not experienced them before I went on the Meth. Any help you can give me with this would be really appreciated.
    I was pleased to run across what you described as "Jerks" I called them twitches. I am on the Duragesic patches and have had two back surgeries. I can't recall if they started before or after the pain medications but I believe it was before. I know the " jerks" have kept me awake many times at night but I don't often get them during the day. I did discuss these "jerks" with my doctors and they assured me it was not due to my condition or drugs. I was left to assume it was just the lack of any kind of physical activity. I was really active before my injury and spend 95% of the day laying down. From someone that went from working 12 hour days and walking miles to go to not doing anything for 3 years now is really a challenge. I have started an aquatic workout because of my muscle loss and shortness of breath in hopes that will work. I don't know if this will help the jerks. I really hope it does because they are really annoying and there is nothing it seems I can do to prevent them but if the aquatic theropy helps I will sure let you know

     
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