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Life style changes

Posted , 5 users are following.

thomas24929
thomas24929

I would like to mention how RLS has impacted on my life and the life changes I've had to make to cope. These changes do help a little and I hope may help others. Because of a lack of sleep and the resultant sleep depravation, I've found that there are times that I'm just so tired that I find it difficult to motivate myself. My GP recently increased my doseage of Venlafaxin which seems to have made some improvement. To overcome my sleep depravation, I find I have to attempt to sleep at any time of the day or night. Generally, I may get only about 10-15 minutes. I don't always sleep but just rest. Sometimes however, I do sleep. Possibly for about an hour. These cat naps do seem to help. I busy myself doing something, which is what we RLS sufferes have to do, and then try to rest. Then I busy myself again and then rest. I find that eventually I manage to overcome my tiredness to a more manageable level. This behavoiur prevails 24 hours, day and night. I take 4 Pramapexole at around 5 in the evening which helps me through the evening when I don't need so many cat naps. I never sleep entirely through the night. I've had to come to accept the fact that I suffer RLS and that It will impact on the remainder of my life. There is nothing I can do about it so I have to accept it. The above coping mechanism seems to work to some extent and I hope may help others. I'm 65 and live alone but I would imagine that this coping mechanism may be difficult for people you live with to accept as they would probably have to keep qiuiet whilst you try to sleep. Anyway. I hope this is of some help to someone.

Tom.   

1 like, 15 replies

15 Replies

  • mskarla
    mskarla thomas24929

    Posted

    I have not heard of the Pramapexole, my doc. has me taking Requip, and I can take 2 a day if needed, BUT they make me too sleepy, so I take a 1/2 of a pill about 8pm and my other 1/2 about 30 minutes before I want to go to bed, it works great, most of the time,. I find that sleeping in my recliner I get the best sleep mostly as of late been sleeping several hours before the bladder gets full..last night about 7 hrs, this is such a difference..when I can't keep my legs still, they just want to move an I feel like I have legs that operate like an electric egg beater, on fast speed..when I am on pain medication, they do even better of course, I have just had my 2nd knee replacement surgery back in Sept, and before that March...I hate the restless legs.....
    • thomas24929
      thomas24929 mskarla

      Posted

      Hello mskaria. Ropinerole is much the same as Pramapexole. A dopamine agonist. Some medications work for some and not for others. Pramapexole works for me to some extent so I continue with it. I'm reluctant to change. Ropinerole would be I guess the next possible drug I could take. I have tried the Neupro patches but they didn't work. I am considering altering the time I take my Pramapexole. 5 pm may be too early. Tom. 
  • mskarla
    mskarla thomas24929

    Posted

    I hate being sleepy, as a matter of fact it is the worst feeling to be so sleepy that even your eyes are crossing..I get plum agitated at myself, I also have a bunch of trouble if I am driving an need to stay seated while my rider partner is taking care of business in a store or something to that effect..next thing I know is I am bounching my legs or stomping the floor of the car, since I have had knee replacement surgeries, in my denial I thought they might be better, but NO, they are still crazy.
    • thomas24929
      thomas24929 mskarla

      Posted

      I hate being sleepy too. You can't function. I actually fell asleep whilst driving recently. I was in a queue of traffic and moving slowly when I failed to stop and nudged the fella in front. My GP advised me not to drive. However, since my Venlafaxin has been altered and I've adopted my cat nap coping machanism, I've improved. I can't drive long distances now. I take the train. If I do suffer RLS whilst driving, I have to stop and get a coffee from somewhere. RLS is a nightmare. I suppose, to look on the bright side, it's not going to kill us. Just difficult to live with. Tom.
    • graham9772
      graham9772 thomas24929

      Posted

      Dear Thomas

      RLS is an rotten thing to suffer.   My doctor has told me that RLS wont kill me just make me feel sleepy.  He had no idea.  I had to drive as part of my job servicing hospital machinery.    Every job was urgent to the customer so I was often out until 3am, then couldn't sleep and back on the job at 8.  It nearly killed me many times.

      I found the worst aspect was memory loss.   I often couldnt remember details of what I had done the previous night.

      My good news is that I am much better even though I cannot take any of the usual drugs.

      Please take the time to read up references to the FODMAP diet in this forum.   Many people report that they feel there is a connection between what they eat and their RLS.     Perhaps the FODMAP diet holds some hope for you.     There is a discussion titled Diet and RLS.

      The FODMAP diet is not some fad thing.  It was developed by the Monash University in Australia for IBS sufferers and for some reason it has helped quite a few RLS people.  It has been adopted as part of IBS treatment in US and UK and probably other places.   No-one profits from your following it although there are a couple of books around.   All you need to know is free on the web at sites mentioned in the other post.

      From a very unscientific experiment 4 out of 5 people with RLS who have tried the FODMAP report great relief from the first night.   Not all so quick - I took about 12 weeks to be able to sleep right through the night.    Once the symptoms are under control you reintroduce food to build up your own list of foods that don't cause RLS and then they becomes your diet for life.  After a while you don't even miss the foul foods that you know will cause you misery.

      Let me know if I can help with any aspects of the diet or extra information. 

      Give it a go.   You really have nothing to lose BUT get your doctor to make sure you are healthy enough for a fairly severe diet.   Also get him to check iron, magnesium and Vitamin D as some people have rid themselves of RLS by topping up these

      Graham

       

  • mskarla
    mskarla thomas24929

    Posted

    The need to move my legs, is great right now!!.

    When anyone asked about my RLS, they imply about pain, my legs have no pain for this, only my knees, from arthritus  and sometimes my muscles feel stretched ...tight ...

     

  • mskarla
    mskarla thomas24929

    Posted

    Dang it, I wanted to ask, are you in the USA? I am in Texas...USA
    • thomas24929
      thomas24929 mskarla

      Posted

      You used a lot of Americanisms like bunch of trouble, plum agitated, dang it. That made me wonder where you were. Not surprised your in Texas. Guess you've got a Southern Drawl. I'm in The Black Country, Britain. It's 1 am here in Britain. I'm up unable to sleep. But this is usual for me. I tried to sleep a couple of hours ago but just knew it wasn't going to happen. I had made plans for things to do but ended up writing to you instead. You've had some bad weather in Texas recently, haven't you. Tornadoes, snow etc. We've had so much rain that a lot of areas in Britain are under water. Thank you for giving me something to do whilst I can't sleep. Tom.
  • mskarla
    mskarla thomas24929

    Posted

    OMG, sorry your not able to sleep tonight..are you  on FaceBook? we can be friends on their also...yes the weather has been cold wet and we also had snow...I hate the mud, it just keeps on giving ya know?

     

  • joan44703
    joan44703 thomas24929

    Posted

    Hi Tom. My llife with RLS happens to be just as you describe yours, Mine is rubbish can't understand why no-one has researched this condition. It really needs some publicity I tire of people saying "You're getting there"  "You must be getting better" when I'am not getting there or getting better I am trying to cope with this debilitating Illness 24/7.Thanks for your input Thomas really helpful Joan

     

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