Has anyone tried Methadone for RLS?

Posted , 20 users are following.

My doctor would like to try me on Methadone and I have mixed feelings. I'm on a large dose of Ropinerole and it isn't helping me anymore. It's the only thing I haven't tried yet. RLS is ruining my life. It's now in my arms and legs and my quality of life sucks! Don't know what to do next.

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  • Posted

    My father has seveer RLS.  He tried Requip and found it to make him very confused AND made his RLS WORSE in the morning!!! He also tried methadone and it did work for a few months and then stopped helping.  The one thing that has worked is Tramadol!!! He found it accidentally when prescribed this for some back pain.  He was to take 50mg 3X day for his back.  After his back was better he took ALL THREE pills, 150mg, all at once about an hour before his RLS usually acted up!!  Works like a charm!! The only problem is you might have a hard time convincing your doctor to give you this dose.  Now that my father's weight is significantly lower then when he first started with all this, he can actually get relief from just 2 Tramadol, 100mg!  The doctor has to write the prescripts as 1 pill 3Xday or the ins won't cover it.  He knows my father takes them all at once though and is fine with it.  It really does work!!  
  • Posted

    I used dopamine agonists (Ropinerole, Neupro and Pramipexole) for about 3 years putting up with their side effects (sickness etc) but I reached tolerance after a few months on each and tried to cycle them 3 months of each. I reached tolerance so quickly they became useless even after taking iron to ensure my Ferritin level was around the 100 level advised for RLS sufferers to avoid augmentation. I have since been taking Tramadol which is my current life-saver and after adjusting dose and timing has proved very successful
  • Posted

    Ropinirole, Pramipexole and Neupro are similar drugs, They all need controlling at about 1/4 max rec dosage. Eg Ropinirole 1mg. If not you will eventually get augmentation, and that means RLS/WED in legs arms and shoulders 24/7. A bigger nightmare than conceivable. 

    The solution is to get off the drug without withdrawal. Methadone is the best answer. 4-6 weeks of 10mg day. That will resetthe Ropinirole and is so small a dose will not be addictive albeit there are other side effects like consipation and drowsiness. THen switch to Horizant or Lyrica. If they don't work perhaps restart say neupro (patch is best of 3) at small dose until another methadone reset is needed.

    • Posted

      Not used this hyn only gabepentine and it don't work really. So being sent to a neurologist. Hope I get some answers. Hope you get some help hun
  • Posted

    I so understand your dilemma!! I all so have it in my arms at times, not all the time though.I am on Ropinerole daily, sometimes i have to take it 2 times aday. When I am on pain medicine, Acetaminophen and hydrocodone, my RLS is soo much better, easier to deal with...an the Ropinerole then is only needed right before bed..at my age, 65 I do not worry to much about pain medication and becoming addicted, I just use as directed, I have never taken Methadone, my sister did and she was sleepy and would dose off during the day, but she felt wonderful she said, it gave her a new lease online..
  • Posted

    I have been on Methadone for several years. Like you, it was controlling my life. I literally wasn't able to sleep! I had it in my arms and legs 24/7. I found a Dr. that was supposedly the guru of RLS. The methadone worked. I wasn't aware at the time but it does cause weight gain. I put on about 45 lbs. while taking it. I am currently trying to taper off now because my health insurance continuously keeps decreasing the amount they'll pay for, certain pharmacies are simply refusing to fill my prescription because they feel it's unnecessary and I just hate feeling like I constantly have a monkey on my back! Methadone may be the hardest drug to taper off of (I wish I had read up on it more before agreeing to take it but like you I was desperate! I was on 90mg. and now down to 30mg. Be careful not to drive when tapering off of Ropinerole! My neighbor recently tapered off of it and was told not to drive, he felt he could drive a short distance and fell asleep behind the wheel! Be sure to take the very smallest dose possible if you decide to try Methadone! Do you live in a state where marijuana is legal? If so, this was the thing that helped the most with my RLS, unfortunately it's still illegal where I live. I guess they feel getting addicted to opiates is better than a small amount of marijuana! Good luck!!!
    • Posted

      Hello hun,

      I have never tried methadone for my restless legs and arms but tried gabepentine for 8 months, but this didn't really do anything. So I was sent privately to a neurologist. He said pregabilin is best. So I am now on them have been for 3 months. So they make me a little heady in the morning but my restless legs have pretty much gone. Altho last night and the next before I had the legs going some, but it doesn't last all night as it used to especially wen it was at its worst. So I have to weigh up no restless legs and feeling a bit crap for about half hour in the morning.

    • Posted

      I never heard of pregabilin, I'll have to try that when I'm off the Methadone. I'm glad you found something that works for you! RLS is an awful disorder and unless you have struggled with it to the extent we have, it's hard to believe how much it effects your life!
    • Posted

      Absolutley agree; my partner doesnt understand and says it must be in my mind.  Nah unless you have it you do not understand. I have had soooo many sleepless night spacing the floor to get some let up and almost falling asleep whilst standing its untrue.  I ahve also rocked myself on the sofa, until I fall asleep then a few hours later take myself to bed to ahve it start again. awful. I just hope the pregabilin continue to work for me.  I would love to know what causes it. They say low iron, but the ironic thing is I have hemachromostosis an iron overload disorder!
    • Posted

      I was diagnosed with hemochromatosis also, yet have been diagnosed with anemia. I saw a hematologist and was told the type that I have will not cause any problems, apparently there are several types of hemochromatosis. Honestly, I'm still so confused!!! There is a wonderful doctor by the name of Dr. Earley, at Johns Hopkins in Maryland. If you are anywhere near Maryland, I highly recommend him. He was the only doctor able to get my RLS under control. I have been trying to taper off of Methadone because I just don't like the idea of being on opiates long term, however, after reading Treatment for RLS, Johns Hopkins by Dr. Earley, I am reconsidering that decision! I absolutely don't want to be on a high dose but if it can be controlled with a much smaller dose, I think that is the best choice for me. I don't want to go back to the nights of bouncing on a large ball with my head on the bed and falling asleep like that only to be awaken 30 minutes later because of the RLS only to start bouncing again!!!! Read this article!!!
    • Posted

      Sad that your partner doesn't understand.

      Yea, I have banged myy head on the wall to try and knock myself out in the past. Pregablin, read about it. Could make you suicidal

    • Posted

      Yes I read this Ron that it can make you low and depressed! I rang my gp as I have felt very low sometimes and depressed. Not suicidal thankfully.... The gp said she was surprised I felt this way as pregabilin are a mood enhancer and given for pain and convulsions and should make Me feel calm. She said to continue another month and if I still feel the same then she will look at other options... Or keep me on them and give me anti depressants too... Sods law I find something that suits That makes me feel crappy esp first thing
    • Posted

      Anti depressants make RLS worse! Ensure your GP is aware. I 'tripped' on Amitriptelene!
  • Posted

    Really happy with 5mg methadone and 1mg Ropinirole. Was on 10mg methadone for a month to reset the ropinirole. Before was 4mg ropinirole and RLS day and night, now I am RLS freee.
  • Posted

    RLS was ruining my life at one time as well. I also had it in my arms and legs, having it in my arms was the worst! I had tried everything, yet nothing worked for me, I saw so many doctors I can't even count. It was very depressing, I had just about given up. Finally, I found a doctor at Johns Hopkins in Maryland that specialized in RLS. He put me on Methadone and finally I had hope again, for the first time in years I slept through the night without any interference from RLS! Recently, I started tapering off of the Methadone just because of the stigma attached to Methadone. Once again my RLS was getting worse and I wasn't sleeping. No way did I want to go back to the way I was! There is a wonderful article I recommend you watch...just Google John Hopkins Hospital plus RLS plus Dr. Earley, I think it will help you to make a decision about taking Methadone for your RLS. Good luck to you! I wish you all the best and many nights of peaceful sleep!

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