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Desperate for advice

Posted , 14 users are following.

rob58951
rob58951

Hi guys, I'm hoping someone on here can help me, I started having RLS about 7 or 8 years ago, it was mild to begin with, I would have bouts that lasted for a few weeks at a time, then it would calm down and i would have a few weeks off, then it would start again. I was given Quinine Sulphate by my Doctor and this worked at first. Gradually over the years my RLS has got worse, I now have it every night and recently I've started having the symptoms during the day, It's only in my legs at the moment, I am on Roprinole which does work as long as I take it an hour before I sleep and it lasts for about 5 hours, but I still have to get up in the night and do leg stretching exercises.

One of the problems I have is side effects, the sickness and drowsiness. I work shifts as a Firefighter it's a sleeping shift, but I can't take the tablets at night as I would not be able to respond to "shouts" so I tend to walk around all night,

one thing that helps for me is sleeping with a very light duvet, or no duvet at all, in a cold room.

I don't know how everyone else feels, but I'm at my wits end, I haven't slept in the same bed as my wife for over a year, it's unfair on her to have me fidgeting around all night. I've never felt so depressed.

Does anyone know if there's likely to be a cure in the near future ? or if there are any effective treatments other than roprinole that don't have side effects ? 

Any help would be greatly appreciated.

Rob.

 

1 like, 23 replies

23 Replies

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  • oddbiddy
    oddbiddy rob58951

    Posted

    Hi Rob, have you tried coconut water?  I have about half a pint at lunchtime.  Used to have a banana a day but it was a bit hitty missy, the coconut seems to have done the trick for me.  June
  • joyce59737
    joyce59737 rob58951

    Posted

    Hi rob 58951. I started with RLS way back 45 yeRs ago when there was no name for it ,it. Went on an on until 4years ago when I  it got so bad I never slept for weeks  now on premipixole 1mid day  and  2 ,3hours befor bed and no side effect I'm doing great now  JoyceJoyce
    • joyce59737
      joyce59737 rob58951

      Posted

      Hi rob did you not try premipixole,at first I didn't won't to take them but I could not go with out them now.4 weeks ago stayed at daughters and forgot to take them ,well I was up for about 5 hours so now carry them with me in case I'm late getting home as take them 3hours afor bed time,they have no side effect on me x
  • erik79356
    erik79356 rob58951

    Posted

     Rob, I don't know if there is a cure imminent, but I doubt it as the doctors and healthcare proffessionals look at me as though I'm an alien when I describe my symptoms. I can empathise with you, I get depressed at times with it all. My legs start to judder and throw themselves about in the evening when I sit down and will carry on after bedtime it does'nt happen every night but there is no reason or warning when it will happen. I'm on Ropinerole but the only side effects are as descibed on the leaflet, want to gamble, smoke etc. Sorry I am of no help but  at least it shows youre not the only one out there suffering
  • Hazel_Kennedy
    Hazel_Kennedy rob58951

    Posted

    I have had RLS since 1986.  Symptoms have driven me to the extent that I couldn't visit friends in the evening because I couldn't sit still. I have had to get up and walk round in the middle of the night as I couldn't sleep, very tiring. Tried various remedies without success, but when on painkillers, after hip operations, symptoms disappeared even though I was very inactive and sitting down a lot. I have found that taking 2 x dihydrocodeine tablets about 6pm every night totally gets rid of any symptoms. If I forget to take the tablets the fidgety legs return, but disappear within 20 minutes after taking tablets.  I cannot believe how well they work.  I get them on prescription from my doctor. Very occasionally I get RLS in the afternoon if sitting still for a long time but I just get up and walk around for a while, as don't want to take anymore than 2 tablets per day.  No side affects. Best of luck, RLS can affect your life so much!
    • rob58951
      rob58951 Hazel_Kennedy

      Posted

      Thanks Hazel, I know what you mean, I went to the pictures last night and had to leave after 40 mins. I'll ask my Doc about them. They sound good.
    • joyce59737
      joyce59737 Hazel_Kennedy

      Posted

      Hi Hazel ,tell me have you ever hurt you back ,just wondering as i did 47years ago and it was few years later that RLS  started and you no that to visit any one is a no no,our lives are around this RLS and I'm feed up with that wish some one wound really look into it sorry just having a moan x
  • mary47679
    mary47679 rob58951

    Posted

    I found that 7 or 8 sessions of acupuncture worked.  It didn't start working until after 10 visits for me, but it's been pretty good since.  If not, I take tramadol, and I have found that even if I take it in the early evening, it does not cause drowsiness.  Good luck.
  • sioux3309
    sioux3309 rob58951

    Posted

    Hi Rob, I feel for you. I've had it for about 30 years now. It has considerably gotten worse in the last couple of years. Mirapex worked for a long time and then quit.  At the moment, my doctor is trying Methadone on me. Ropinerole worked too for a while. I can't go to movies or driving for a long time or anything anymore. I've been on the Methadone for 3 days now and have not seen any changes yet. I'm very hopeful. Dr. did a blood test on me and found my iron to be very low. They say that is one of the causes of RLS. Going in for iron IV's soon. It's a horrible illness. I wouldn't wish it on my worst enemy if I had any. It's so debilitating. I usually end up taking a couple of hot baths a night, which helps. I walk around a lot at night too until I fell down the stairs and broke my foot last year. Imagine having RLS in a cast!!  Not fun. Good luck to you and please share if you find anything out there that works.
    • joyce59737
      joyce59737 sioux3309

      Posted

      Hi Sioux I no that feeling  I've had it since I was 31 now 73 yrs and life's not been easy that and 5 children and then doctors new nothing of this  more or less said get on with it now can't do with out my premipixole x
    • rose44372
      rose44372 sioux3309

      Posted

      Hi There try blackstrap molases without the sugar .one tablespoon dissolved in boiling water.THen all natural Vit E helps 500iunits start with one before bed and if no relief try two .Just remember if you have high blood pressure start on the lowest dosage of vit E and build it up gradually Low 50international units .

      Then try Cal Mag D3 and K2. Apparently according to the Vit /d 3 book we are all mostly difiecient in Vit d3.I am 59 and take 5000iu of vit D3 with my cal mag. and then Solgars K2 to transport it out of the artereis into the bones.I have just  about tried everything on the net and this is what worked for me.Did not find Molases on the net,Hope this works for you.

  • allbifaith
    allbifaith rob58951

    Posted

    Ok everyone..I have been following these site for about 3 months and the symptoms all feel like mine plus additional waking up about 4 times to use the bathroom every night..it was hectic...last month I went to my Gynaecologist who listen attentively and said that it looks like all these symptoms atarted when I started Menoupause..it sounds true and she suggested a low dose Hormone Patch (Estrogen) My symptoms completely disappear after 1 week,,,,,I know that it was god who showed the Doctor what to do...I know Estrogen has its own side effect but my Doctor said she will start to reduce the dose after 3 months and also just added Provera to counteract the side effect of the Estrogen...I hope this helps someone
    • rose44372
      rose44372 allbifaith

      Posted

      Yip i also had menopausal restless legs and insomnia and tried synthetic hormonal therapy,but had no improvement. Just a lot of energy at the end of the day and as the evening approach i would want to cry because of the insomnia and restless legs. For the legs i use blackstrap molases without the sugar .one tablespoon dissolved in boiling water.THen another remedy all natural Vit E helps 500iunits start with one before bed and if no relief try two .Just remember if you have high blood pressure start on the lowest dosage of vit E and build it up gradually Low 50international units .for the insomnia I used Bemer therapy on the basic program with amazing success.

      within 2 weeks my insomnia was solved.I bought it for my backpain , but it seems to help for everything.

      Then try Cal Mag D3 and K2. Apparently according to the Vit /d 3 book we are all mostly difiecient in Vit d3.I am 59 and take 5000iu of vit D3 with my cal mag. and then Solgars K2 to transport it out of the artereis into the bones.I have just  about tried everything on the net and this is what worked for me.Did not find Molases on the net,Hope this works for you.

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