Does anybody get the RLS symptoms all over you body and not just in the legs or sometimes not in the legs at all but everywhere else instead

I have been Restless Legs Syndrome for a long time. I have been controlling it with Pramipexole or Mirapex .25 for many years. About a year and a half ago I took a pretty nasty fall and tore my meniscus in 2 places. One min. I was walking, the next I landed square on both knees on the concrete. I was carrying 2 cans of paint at the time so I could not get my hands out to break my fall. I could feel my spine hit the back of my neck and I had a head ache and my jaw hurt for days afterward. The doc I went to told me that I tore my meniscus in 2 places (after I had an MRI) and if I could stay off my knee for a couple of months it should heal. Well, after a couple of months it was much worse. I went back to him and showed him that I was limping much worse than before and he said it was my back that was the problem now. So I went to the back doc even thought I knew it was still my knee but my back hurt too, so I went. All this time, the RLS had been getting worse and I was taking 2 pills a night instead of one. That worked for a while.

The back doc took some x-rays and said I have arthritis throughout my whole spine and a couple of bulging discs. So he gave me some shots of cortisone in my spine and it was better for a while but I was still limping.

About 6 months later, I went back to the back doc and he said it is still the knee doc and I should go back to him.

So I went to a new ortho doc and he said that I should have had surgery a year ago on that knee. And that it would never heal on it's own. And now, from limping so badly for a year, I have arthritis, bursitis and ITB Syndrome in my right hip. Since I had the surgery I have been taking Mirapex .5 mg. that worked ok for a couple of months. Now, I am getting the "all over the body" RLS. I can't lay still in the bed on some nights and it's driving me crazy!

I have never tried any other drug and I am wondering if there is something else that might work better.

Any idea's would be very much appreciated.

Sorry for such a long introduction, I am new here.

Thanks. :)

BBE

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  • I do not have RLS-pain all over my body, "just" arms, legs and hands. But I do often have a strong feeling of very bad discomfort all over my body, a feeling of alarm and kind of body-panic. Since I got morphine it all went away.

    Here in Sweden we say that you should not take moore than 0,45 mg Sifrol ( think it is the same as Mirapex) many of us has been better in our RLS since we lowen the dose.

  • Hi Swedish, my doctor just recently increased my dosage from .25 to .5mg. It works when I have it in my legs but last night when I was writing this I just couldn't get comfortable in my bed. I had to keep moving. I had already taken one pill about an hour earlier so I took a second and came on the computer to see what I could find about it. And I found this forum. They would never give out Morphine here just for this. That is a very controlled drug here in the US. I am hoping someone has another recommendation for me to ask my doctor about.

  • You wrote that you'll never get morphine "just for this". I do not think you should but this can really be a living hell, I've been taking Sifrol for 13 years, morphine for two and now I have a spinal morphine pump. This can be a very, very difficult disease.

    The sympthoms you describes is quite typical when dopaminantagonists are taken over max dose. Maybe your doctor does not know that it is special for us with RLS? Try to lowen the dose, take a half and if it not helps in two hours you take another half. Good luck!

  • I was taking a lower dose and it wasn't working anymore. That is why I asked for a higher does. It does work for the RLS but not when it affects other parts of my body.

    I think I have just been taking the same thing for to long.

  • the limping might cause the whole back and hips to hurt. I would

    start with the knee doctor first. I think that it's best sooner than later.

  • Hi Jaynielynne. The Limping for almost 2 years did cause all the hip problems. I had none before I fell the second time. And my Knee and Hip Ortho is the same person. I will be seeing him later this morning.

  • There are other pain killers that could help. Tramadol is one and can give relief from RLS. I am posting the link to a very good website which gives a list of medications used for RLS. rlshelp.org Look at the treatment page. Also has some very good info on what to avoid for most of us which can make things worse. Includes medications,food and drink.

  • Hi Elisse. I have been taking Tramadol on and off for almost 2 years since I fell and tore the menisus in my left knee and then I fell again and tore the meniscus in 2 places in my right knee and messed up my hip and back at the same time. It seems to work for the pain but not for the Restless body. I don't know where this even comes from. It is very new and I don't like it at all. It is much worse then the RLS alone.

    I also have Percoset but sometimes that keeps me up at night. I can only take them once in a while. I also take Gabapentin for Carpal Tunnel in both wrists and Lorazapam just to relax at night.

  • To behindblueyes

    I get overall RLS. Ot started in one leg,then to my arms and then to my back.i take .25 mg of mirapex twice daily, one around five and take a second around eight. It works most days. My neurologist said it was rare to have it all over. At one point when the mirapex stopped working he put me on fentanyl patch. I now take both the fentanyl patch .25 every 3 days and the mirapax everyday. It works great. It is terrible in the arms and back as with the legs and you walk it helps but when it sets in my back and arms it is horrible. I. Hope the info. Helps. Good luck.

  • Thanks Rubylane, I will ask my ortho and neuro about it. The Neuro app't is not until next week.

  • I get restless leg in my legs, arms, hands and feet but also in my back. I deal with it by not really sitting down until I eat in the evening and do all the kids stuff. Then I take dihydrocodeine so I can relax and maybe another 2hrs later for sleep. I tried dopamine agonists but I'm too nervous of augmentation and running out of options.

    If something happened to stop me being active during the day, I don't know what I'd do ( well I suppose I'd have to try the agonists again :-()

  • Kelka, I will ask my doc about the Dihydrocodeine tomorrow. What do you mean by agonists?

  • Its worth trying, you have to watch for addiction and tolerance but it is very tame compared to the dopamine agonists like pramipexole. I didn't realise that you could take them for that long without augumentation (sp?)

    I would say my symptoms are mainly managed by moving around a lot during the day, if you can't do that then dhc won't be for you.

    The dopamine agonists make me very aggressive/angry and depressed so I hope I can manage with dhc for a lot longer.

    The website Eliisse put up (above) has pretty much all your options, including the opoids.

    Hope your Dr can help and you get a restful night tonight.

  • That may be augmentation from the Mirapex .5 mg., though it often takes a year or so for that to happen, maybe change medication ?

  • I haven't had an "all over RLS" attack since I first started this thread. Not sure why but my doctor just gave me Requip instead of my usual Mirapex, when I needed a renewal of my prescription, after I asked him to increase the dose of the Mirapex. I have been taking .25mg for years and after I fell a year and a half ago and hurt my knees and back, the RLS has gotten worse. Now I am going to have hip replacement surgery at the end of Feb because of all the arthritis that my hip has from walking crooked since the fall. The other night I had to triple the dose of the Mirapex, the RLS was so bad the other night, and it felt like it was starting to "spread", and it still didn't work. I had to add Ultracet, Lorazapam and I had to sleep with an electric heating pad before I could fall asleep, over an hour later. I need something that will work. Does this Requip work? He gave me .5mg.

    Also, I just read someone else's post in another thread about Mirapex helping to add on weight. Has anyone heard about that?

  • Heating pads seem to help a lot of people with pain. Not giving the legs

    a good rest at night makes my legs hurt the next day. The hips in back

    bother me the most. I hope that your surgery goes well.

  • Hmm it only through Gods intervention and through mush supplication to Him in prayer in Jesus name and listening to gosple songs and. Have faith in God. Why I said this is because I am also a victim of what u are experiencing my own case is even worst becos I was born with it , in a rural area where there was no assess to medication but God is sustaining me . This sickness is spiritual so it need to be dealt with spiritually

  • RLS is neurological...!! Sorry you are suffering, you must have a GP...?? They can give you medication to help you.

  • Hello, Im new here too .. I just needed someone to talk to in the small hours when things got bad! You sound like you have been through the mill!

    I have just started to get RLS in my shoulders/arms and hands too ... which, along with the legs makes sleeping practically impossible ! Im also asking for suggestions on what else I can use so Im sorry Im not able to advise anything but there seem to be some long-time sufferers on this site who may well have some suggestions. I hope things improve for you. Best Wishes

  • I just saw your post on here. I am not familiar with your medicines or what you've tried in the past.

  • I'm sorry for everything you're going through!

    I have had severe full-body RLS for about five years now. The medicine that has worked best for me is Tramadol. I take 2 50mg tabs three times a day. Lately I've had to take the forth dose to control the symptoms. I went to the doctor today because although the Tramadol still works it's starting to off after only two hours and it's gotten so bad that my life has started to revolve around the RLS and Tramadol.

    So today he prescribed The Butrans 7 day patch to use to help take care of the break through restlessness from the Tramadol , I'm hoping the patch works well enough that I can greatly reduce the dosage of the Tramadol or even to stop taking it all together.

    Also, for immediate relief I take long, hot baths. Sometimes two to three in the night.

  • Hi Twitch1972, Tramadol can cause augmentation too, aswell as the dopamine meds. :(

  • Can someone tell me more about the side effects of taking Dopamine agonists please. I've been on Ropinerole for many years now and wonder what it's doing to me. But then if I don't take Ropinerole, the RLS (sometimes all over) would be unbearable. Thanks.

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