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New to RLS

Posted , 6 users are following.

sarah22500
sarah22500

Hi, I'm 75 and my rls began - I believe - when totally inactive/sitting around whilst waiting for a hip replacement. My groin pain was unbearable and the only relief from it seemed to come when I sat down. One evening I was watching tv, I started to feel the need to get up and have a good old stretch of my legs or go for a walk but I didn't. That's when I got the thigh "twitch". It was like the painless ccontraction you get when you use one of those fat-busting machines that gives the muscle it's working on a zap- like a painless contraction. Its painless but a twitchy tickle absolutely horrible feeling that makes you want to move your leg. And keep moving your leg. Sorry to be a bit graphic but to me its like being buried alive and you haveGOT to move. But you can't. I'm not sure if this us what any of you have and I would be really grateful for your opinion here as this sort of feeling kept me awake until 5am and I'm dreading tonight. I'm currently taking 0.25 Ropinerole which worked like magic for a week but has now stopped doing any good at all.

 

0 likes, 7 replies

7 Replies

  • dawn70425
    dawn70425 sarah22500

    Posted

    Hi Sarah .. I’m 53 and going through just the same as you’ve said, it drives me mad, just the feeling when it comes on and you know you can’t stop the bloody thing happening, mines worse in bed, and I feel it as tho it’s going through my blood, then I can’t keep legs still, I stretch them so much I end up with cramp then

    lol, because I want it to go away..

    Mine started about 8/9 months ago and I throught it was because I was going through the menopause and have been for the last 4 yrs😩 I’m going to see my doc on Friday see if there’s any thing I can take or do... and it Takes me around 2/3 hours to fall asleep because of it, then I’m awake through the nite as well..

    Feel like chopping my legs of with it at times 🤗x

    • sarah22500
      sarah22500 dawn70425

      Posted

      Hi Dawn,  2 to 3 hours to get to sleep is a long uncomfortable time I agree but it sounds as if you then DO actually fall asleep? I got really panicky last night as I was kept awake with them from 10pm til 5am. I was like someone demented. On the bed, off the bed, move legs 20 times, get off bed again, walked to lounge and back in the freezing cold five times, back in bed, twitching started again, lay there 

      for hours kept moving legs,blankets off, blankets on, went for another march into lounge....... and so ,the dreadful sleepless night went on. Maybe I should walk a lot before getting into bed????????

       

    • dawn70425
      dawn70425 sarah22500

      Posted

      Hi Sarah .. yeah it takes me to around 1 in the morin to fall asleep, at the start I was awake till 3 am for a hour, then awake at 4 and that was it, couldn’t keep still, in and out of bed, sitting in the edge of the bed trying for it to stop... I try and take my mind of it if I can, even to watch tv if I can, as the more I throught about this prob the worse it as become.. Iv brought some herbel meds called restless legs, to try , still can’t get to sleep till early hours and of and on in the nite, suppose to just take 1 but I had to take 2 which helps a little but not enough to stop it altogether , so won’t buy them again, I’m at docs Friday to see what he as to say 🤗x

  • Boomiesmom
    Boomiesmom sarah22500

    Posted

    Surprised your Ropinerole has quit working so quickly.  I was on 1 mg for years and fell asleep exactly 1 hr later for years.  But over time it augmented and also more then that gave me a nasty a.m. headache.  The feeling you describe is pretty classic RLS.  Fine when one keeps moving but goes wild with inactivity.   Also, initially, it only reared it's ugly head at night.  I could tell when the sun was going down as, if I were lying down, that's when it would start.  It was that way for years.  Unfortunately, I'm finding out it gets progressively worse with age.  Now if I am inactive from about 2 p.m. on it can kick in.  I swear, early on it was tied in to starting at night time.  Again, a very common problem.  You may find increasing Ropinerole a bit at a time may work for you.  I am on Ropinterole, Robaxin (a muscle relaxant I've used for 50 years for this disease) and Norco - a pain med.  My RLS progressed  from just 'the jumpies' to mild to very strong pain over the last 10 years or so.  Thus the need for the Norco.  You may want to try both a muscle relaxant which helps with that twitching of the muscles in your legs and the Ropinerole.  Hope you don't need a pain killer - at least not yet.  I find if you take the meds an hour or so before bedtime it has time to kick in.  Trouble is, sometimes it doesn't last all night.  But each person is individual.  With your twiching - I really would ask the dr. for a muscle relaxant prescription (Robaxin works well) along with the Ropinerole.  Just give yourself a chance to see if it has a sedating affect.  Doesn't on me, but can on some people.  So you need to try it at home.  Good luck and research everything you can - RLS sites, web sites, etc., to see what is what.

    • sarah22500
      sarah22500 Boomiesmom

      Posted

      Thank you Boomiesmom, I've a sneaky feeling I need to get myself more active.. what donyou think about those stationary exercise bikes? 

  • valda23668
    valda23668 sarah22500

    Posted

     Sarah  I first  ''acquired" rls after my hip op which is not unusual but  goes away believe.   Mine hasn't I am currently testing toe magnets, may help a bit with daytime twitching I think. I take Sifrol which I need to taket 2-3 hrs before I go to bed. I agree with your description.    Let's hope someone somewhere will find a solution.

  • nfmiller
    nfmiller sarah22500

    Posted

    Hi Sarah, my RLS started 11 years ago on a long haul flight from UK to Australia. I wondered what the hell was going on and spent almost the entire journey walking up and down the plane. Back in UK, I was prescribed Ropinerole but it made me feel ill, watch out for side effects. I was moved onto Pramipexole which I'm still taking today. They work but the longer you take them, the more you have to take (augmentation).  I'm now on 3 times the dose from when I started and I have to take them much earlier in the evening.

    Bottom line, don't suffer with it. Go see the doc and get something for it.

    Regards Norm

    PS. Someone mentioned that Magnesium Citrate works, so I've ordered some and will give them a try!

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