Whole Body RLS?

I am completely at fault for having lifelong RLS, I am athletic and lived in a mountain environment and enjoyed the simple joy of an extreme hike, which resulted in a back injury...no big deal, right? My Dr put me on oxycontin while I healed so I could work fulltime, be a super mom to 2 kids while husband was overseas. When the pain became tolerable, I got tired of feeling fuzzy everyday and decided to quit taking the Oxy, I just wanted to feel like myself again and had never been on meds for 3 weeks before.. ...Within 18 hours I had so much more than just RLS ---my arms, neck, spine, quads, calves, even wrists were agonizing. I had some serious concerns that it was all in my head but when Dr finally called me back, he assured me I had created my own nitemare by dropping oxycontin cold turkey ...and also dropped the bomb that I could most likely expect it to be my lifetime condition based on family history.

He prescribed methadone, 1/4 of a 5 mg tablet 2x a day, which is the same dose I am still on now, 24 years later: 1.25mgs each morning and evening to be 100% symptom free.

Am I addicted to methadone? Yes. Is the 2.5 mg daily dosage terrible for me and alarming?

Hell no, I am a top producing broker, with grandchildren that I enjoy playing with, able to sleep 6,7 hours a night with no other meds in my life, lift weights and practice yoga daily.

I am comfortable, productive, have a wonderful marriage and no nasty whole body RLS agony in exchange for consuming 2.5 mgs a day of methadone.

It works quite well.

7 Replies

  • Sounds more like withdrawal symptoms as opposed to RLS imho!

    Glad things are going good.

  • Stopping any med by going cold turkey is not always a good idea because like raffs said it sounds like it was withdrawals you had.

    Glad all is well with you now on the methadone. But are you addicted to it. no you are not. you are dependent on it. Addiction means you need to take more and more because you are craving it. We are all dependent on our meds to get relief whether that be from RLS or any other condition that needs meds to live.

  • No you guys are exactly right, I left that part out...the withdrawals set off a debilitating RLS whole body, mostly legs and wrists. Dr had me start the Oxycontin again and gradually wean off of it, like a reset could reverse the problem. It did not.

    Several times in the last few years, like the two courses of chemo I went thru for nonhodgkins lymphoma of bone marrow (who knew?) I actually tried to see if I could wean off of my little quarter pills. I actually thought it was going well until I had to start having Neulasta shots, which cause the most painful bone aching you can imagine, in waves like having contractions during childbirth, and almost as intense. In between those contractions, the so familiar legs and wrist aching- gotta move nonstop- can't sit, sleep, breath an extra breathe came back with a vengeance. The memory of sliding down the wall that i had been using to brace myself against into the toilet from the pain, then the crawl on hands and knees for methadone in between is a great snapshot...but I somehow kicked the cancer (6 years now) and back to status quo. I guess I just felt the need to tell others that maintenance of rls via methadone isnt the horrific crime some of these guys seem to say it is.

  • Like you have found out. Any Opiate will cause your body to stop producing the amount of dopamine you need to feel and act normally.

    Most of us never start producing that neurotransmitter again after we used opiates for any reason.

    Mayo Clinic has done a research project on agonist as opposed to low dose codine. They found that low dose codine is superior to any of the dopamine agonists.

    We become dependent for comfort, on all drugs we use that take the place of any of the neurotransmitters.

    If you stop taking any of them you go thru the same withdrawal as heron addicts do. I went thru withdrawal 3 or 4 times only to become dependent on another drug.

    I am now conent to know I will be on the currant drugs for the rest of my life

  • Restlessashell,

    I may have done the same as you by being an active person I am pushing 80 and have had what I'd call a miserable existence since I was about 55. I have tried everything to get rest at the same time as other people. I too have an inherited genetic predisposition to have RLS. I had 8 aunts on my mother's side of the family and they, along with my mom, had varying cases of RLS. I have tried everything I heard about or read about and the longest period of At ease living was the years I spent on Maripex. I felt as if I was Omnipent. I did everything as badly as you can. All my obsessive compulsives tendencies were amplified. I am now almost broke and have no chance to recoup all the gambling and bad investment losses.

    I tried methadone at 5mg and had almost 24--7 RLS. I went thru withdrawal from opiates and Maripex only to have a permanant tendency to either move or go crazy. I went on Gabapenten and time release ropinarole. I never sleep more than 4 or 5 hours a night and get up so early you'd think I had some important task for the day.

    I'd say my life is totally without any purpose except trying to rid myself of the strange feeling I get when not under the influence of dopamine agonist and opiates. I wish I could say as you say that I am at ease and happily productive. I am not……..

  • I hate to say this but it is such a comfort to read someone else has the same symptoms that I have had.I did not mention by the way that I was on mirages for about a month during which time I was so oedematous and put on 27lbs! My neurologist told me to cut my portions down!My response was to cut the medication..Since which time I have managed to cut down 7 lbs. I have in my whole life never been more than a size 8 so one would have thought to balloon to a 16 would have elicited some signal. Also the shopping I felt I was lucky not to be cavorting around Las Vegas.Although at my age it would ha been hope springs eternal.

  • Retren I forgot I did try acupuncture for sciatica it got me functioning for that but not RLS. I am not sure but I think the different sites and the mode are all defined by the condition.I did not go for RLS so it is worth a try.Retren

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