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I really need some help

Posted , 7 users are following.

lynne1953
lynne1953

I have had restless leg syndrome for several years and over the last year have been on ropinirole 3mg daily.  This worked for a while but over the last couple of weeks I have been desperate its back and with arms involved as well now.  It happens when I get into bed mostly but over the last week or so I can get it anytime.  I can't keep still, can't lay down, can't sit.  Someone suggested Magnesium so I take that as well now but I am in a terrible state when it happens.  GP says i am on a high dose of medication and that was that.  I can't go on like this.  My dad is terminally ill and we live 6 hours away.  We frequently make the journey and stay in a hotel.  This means that I am pacing in the room and my husband can't sleep either.  I don't know what to do.

1 like, 43 replies

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  • RobertT
    RobertT lynne1953

    Posted

    I think really you've got to go back to your GP and make sure he understands your situation fully.

    4mg a day is the maximum stated in its licence for RLS and at one time I was told not go above 5mg. Luckily two 2mg tablets a day, one generally about mid-afternoon and another last thing, has worked for me for a couple of years now.

    Also lack of sleep worsens the condition and I guess from what you write you may be having problems getting to sleep.

    Besides ropinirole there's rotigotine patches – not had them myself but people seem to find they work. Gabapentin, pregabalin and gabapentin enacarbil work for some people (not me). Some painkillers and tranquillizers are also sometimes used in treatment, I read.

    So, basically I would think you would need to seek your GP's help to get the RLS under control and get some decent sleep.

    • lynne1953
      lynne1953 RobertT

      Posted

      Thanks Robert, i already take Gabapentin as well but don't find that helps at all.  I am going to ring GP again tomorrow.  Problem is though you can't get an appointment, you have to talk to the receptionist who will then ask a doctor if he/she is going to ring you back.  If its not deemed serious you get nothing, if it needs attention but is not serious, in their opinion, you might be asked to go in about a week's time or if by some chance they think it needs attention they will ask you to come in.  Its a gamble.  I have an appointment next week but its to discuss an ongoing foot problem and we can only talk about one complaint per appointment!
    • RobertT
      RobertT lynne1953

      Posted

      Yes, I have telephone consultations too.

      It's quite possible your doctor's concern is augmentation when reluctant to prescribe a higher dose (or something else), in which case I would guess you need to make it clear that you can't go on with the situation as it is.

      As you describe it, I wouldn't have thought it impossible that a prescription be sent electronically to your usual pharmacist the same day.

    • lynne1953
      lynne1953 RobertT

      Posted

      No its not actually impossible and has been known to happen, thanks so much for taking time to reply to me 
  • julie1268
    julie1268 lynne1953

    Posted

    Hi Lynne, Sorry to hear your suffering so badly, it is horrible! I have bad over last few months. Someone suggested to me about magnesium. I have a spray that I will use for the first time tonight. Hoping it works as I'm so so tired. Sounds like your under a lot of stress at the minute and I know my rls is worse when I'm stressed. I have been taking omeprazole for heartburn and I think this makes it worse. Could it be a medication is making things so bad? I know that antacids aren't good. Also I have an app on my phone that I have on when I'm trying to sleep, I like the sound of rain. I know its something simple, but I does de-stress me and takes my mind off the legs (I have it in my right arm too). I hope you get some relief soon😊

    Julie

    • lynne1953
      lynne1953 julie1268

      Posted

      I am on omperazole as well and I also love the sound of rain, going to look for that.  I have thought and its possible that the stress is what has triggered it again.  There's no hope of the stress going away anytime soon, I hope I can get some medical help.

      Thanks for being kind enough to reply

      Lynne 

    • julie1268
      julie1268 lynne1953

      Posted

      Hi

      That app really has helped, there's loads of noises to choose from. Also I try to get my room as cold as possible before I get in bed. I have been in the spare room since Xmas, not fair on hubby, my scratching drives him mad. The more I look into this omeprazole thing, the more I'm convinced that this is the root of my problem. I'm trying my best to control the acid by diet. Tonight is the 2nd nigt without

    • julie1268
      julie1268

      Posted

      Sorry, stupid phone 😊 2nd night without it so early days. Its worth doing some research on this, has been a bit of an eye opener. Hope you drift off in the rain 😊
  • martin45332
    martin45332 lynne1953

    Posted

    I know this may not help but I had the same experience with Ropinirole. I was able to ring the doc who stopped the Ropinirole and put me back on Clonazepam. At least I am sleeping now although not well. The doc won't try anything else. Until I see a neurologist
    • lynne1953
      lynne1953 martin45332

      Posted

      Thanks to all your replies I might have found a pattern here.  Last year i had to have surgery to remove a disc in my neck.  At the same time i had begun to lose balance and co-ordination.  neurological tests were not conclusive, if they can't give it a name it can't be treated.  I have severe REM behaviour disorder for which I am given Clonazepam.  I am also on Gabapentin.  It should be enough to keep an elephant asleep and still but none if it is working!  I am beginning to think that the answer is neurolgical but the neurologist has discharged me!
  • RobertT
    RobertT lynne1953

    Posted

    Did the RLS worsen when you started taking omeprazole?

    I think taking a PPI (such as omeprazole) will undoubtedly raise concerns about iron levels and I would be surprised if a doctor prescribed anything else until that was resolved.

    • lynne1953
      lynne1953 RobertT

      Posted

      It has worsened yes since taking the Omeprazole.  I have a hiatus hernia thats why I have the omeprazole.  I am willing to give anything a try!

      Thanks again

    • Udon
      Udon lynne1953

      Posted

      Hi Lynne.  I know that my RLS improved when I stopped the nightly tagamet or zantac.  I too have a hiatal hernia.  Everything gives me heartburn except raw fruits and vegetables.  Even a bowl of cereal.  The heartburn can be somewhat un-nerving.  Whenever I feel heartburn come on I take either papaya enzymes or some form of zinc. Sometimes I will pop an antacid and then I ALWAYS get an RLS attack.  Same is true for Benedryl and melatonin and even eating a large meal can trigger an attack.  When I do get an attack (which seems to be happening more often for no apparent reason) I take an iron tablet if the attack is at night.  If it's during the day I just gut it out.  For me it has to be iron bisglycinate.  Ferrous sulphate does not work for me.  And even the bisglycinate only works for one night.  I am far from anemic and my iron stores are around 100 yet the only thing that stops my RLS is that iron pill.  I wish my brain could just get the iron it needs from my stores but that may be the whole or part of the problem with RLS...brains that cant acquire iron once it's bound up in stores. 

      I never take iron except during an attack because I truly believe it is a waste of time to just keeping adding to my stores.  I know the so-called RLS experts think high stores will lessen RLS symptoms but I just don't think so.  Good luck and keep us posted.

       

    • julie1268
      julie1268 Udon

      Posted

      Thank you for all that information Udon. The melatonin is interesting. In the past that has always helped me sleep but have tried it recently and had a terrible night, but only since I ve been on the omeprazole. Last night was the 2nd night I've not taken it and there was an improvement in the rls. The heartburn hasn't been as bad as expected, but I've been really strict with my diet. It sounds like you have an awful time with acid 😞
    • Udon
      Udon julie1268

      Posted

      Julie that's incredibly good new!!!  RLS is the strangest of any condition on earth.  What other condition has symptoms that disappear when you stand up and walk???  And all it takes is one little tiny pill to keep us up all night and essentially one little pill or syrup wink to overcome it.

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