Experienced RLSers. Where to next w/ severe RLS? Is there any hope?

I have severe RLS that attacks not only my legs but back and arms with such pain that I can only keep it down by fentanyl and morphine. I also take requip 4mg, magnesium tablets, potassium along w/ other vitamins. I am constantly checking my iron which has never been low and do yoga for stretching. Thank God for my Doctor!

What am I in for as I get older?

Am I on narcodics until I die?

I fear lying in bed, not able to get up but fighting RLS.

I'm 57. What's next?

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  • The answer to that I wish I knew! I too have tried everything with little success. You need to make bed your friend, I know it's hard and sometimes I look at mine and hate the sight of it! I spent all of last night up and wandering about like a lost soul. It's the pacing that tends to work for me. After about 8 hours of being restless I can sleep but by then it's time to get up. Good luck x

  • Thanks for your reply. I appreciate any conversation w/ someone who has RLS. Maybe something can be done about this disease if we educate ourselves and others about the seriousness of RLS.

    As you know, this is not fun! My RLS can start at any time, usually around lunch or no later than 5pm.The mixture of drugs keeps it at bay for now, thank God and my Doctor, but the thought of dealing w/ RLS without help is frightning. I do not want to deal w/ this nor does anyone else. The majority of people do not know how severe this disease can become. Not only do we deal w/ it physically but also mentally every day.There are even documented cases of suicide in RLS case studies.

    Thomas Willis in 1685 observed RLS and wrote, "Wherefore to some, when being in bed they betake themselves to sleep, presently in the arms and leggs, leapings and contraction of the tendons, and so great a restlessness and Tossings of their members ensure, that the diseased are no more able to sleep, than if they were in a Place of the greatest Torture."

    The greatest torture is a pretty good explanation of how RLS feels if someone asks.

  • Love that quote from Thomas Willis. Rls must have been around a long time! I have had it since my teens and am now 56. When it kicks off I have no life at all it just takes over.only other sufferers really understand . I have tried to explain it to my husband but can't find the right way to describe it. He does sympathise though and helps out when I am tired and grumpy.i too wish something could be done to help. Take care, Marj x

  • Hi I am sorry that you are suffering so bad. A few years ago i was like yourself and luckily my ropinerol 4mgs does help me most of the time. I has made a massive difference. But even before starting these meds I used "vibrational therapy". I was gMven a chair massager as a gift and one night it was lon the seat of the couch and i was lying on the couch doing a "Michael Flattly"

    i must have accidently hit the on switch te masseger started vibrating against my legs - well this sensation was really pleasant and it seemed to "mask" the awful feelings in my legs. I have used foot massagers in my bed (it makes the mattress vibrate. A hand held back massager that i can place inder my knees. I know that this brings me relief and i could not cope without this sensation when my legs are bad. I have also tried anti inflammatory gels (ibuleve)on my legs and found this provided some relief.

    i wish you well and hope you find a solution. Regards Gillian

  • thank you!

  • """I fear lying in bed, not able to get up but fighting RLS. """

    RLSer - I have taken the liberty of quoting you.

    I am 63 and you have stated what is my biggest fear. If I am ever in a 'care situation' unable to communicate how would the carers ever know what was distressing me, and are they likely to understand the importance of medication being on time. How would they ever know the trauma and torture that may come across as just a difficult patient/resident.

  • a living will or a "palliative care agreement" in the US takes care of that problem. I have it written everywhere hat I am NOT to be restrained in any manner. do you have something like that in the UK?

  • Thanks again to all replies.

    Still no answer from someone who has had to experience it.

    I would imagine we have had no one able to document, to the best they could, to let us others have some kind of idea what to expect.

    Jumplegs understands my fears. Are we the first to go thru this? I doubt it, just maybe not recognized by caretakers. I think I'll get my 1st tatoo, RLSer.

    I hope that more people are educated about this desease very soon so going thru our next phase of life can be better.

    Don't get me wrong, I love my life and will not leave it on my own.

    I just did not plan on RLS. I guess traveling will be out of the question.

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