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Dad's famous Kenny Everett "All in the best possible taste " impression. best

This awful condition runs through my family like an unwanted present. My dad bless him had it all of his life, 87 when he died and he was largely ignored by doctors never had any meds. My older brother and sister both have and do suffer, strangly both have undergone spinal stenosis operations. I also have spinal stenosis, having spoken to many medical practitioners they never seem to show a hmmmm! moment.
I have lived with RLS for over forty years. The last eight on ropinerole and more recently Gabapentin.
As you probably all know a growing intolerance to prolonged meds. Great when they work , but the rebound.
People cannot comprehend how it takes over you. Indeed my poor old dad would sit in his chair after work absolutely worn out and off they would go. My then girlfriend almost burst out laughing when he did his exaggerated double legs swop ala Kenny Everett impression.
You ain't laughing now thirty years of disturbed sleep later, thanks for your patience Teresa.
I am luckily the type of guy who just gets on with it and like many others have developed many ways of coping.
I strongly believe that I am a stronger person for having this condition, having worked as a carer in the community with people who had MS or Parkinsons so I do know a tic from a spasm. But it really annoys me when my health having taken such a nosedive in the last five years. Conditions combined to causing my premature retirement I strongly feel have been underpinned by my constant personal battle with RLS. All of them I get a huge choice of drugs therapies and treatments. But hardly any input towards the single most invasive thing in my life. It's the cruel way that it shows up when I'm trying to rest, meaning sleep is taken as and when I can. You know when you are with the doctor again saying how low and tired you feel, though no thoughts of self harm. Yet there are times at 3.45 a.m. again when you might whisper oh please not again.
Sorry this is a ramble isn't it but I've only just found you and feel like I'm out of solitary.
I would like to hear how you cope , wishing you a peaceful evening.

  1. Thankyou I haven't had much luck with alternative ways of dealing with RLS. It is good to learn about how other people have experienced varying success and failure.
    I told my sister about your forum and we are having a look at what might be of use to us.
    Many thanks Rob.

  2. Hi . Welcome to the community. I'm glad you found us, especially given how you're feeling right now. Never feel the need to apologize. That's what we're here for -- to offer support when you need it and a safe place to vent.
    You've been dealing with this for such a long time. My heart goes out to you. Have you ever tried using grounding mats at night when RLS is keeping you awake? Some people use the floor mats while others use the full bed mats. Many in this community have reported good results. Here is a forum post about one person's experience with them: https://restlesslegssyndrome.sleep-disorders.net/forums/grounding-mat-for-rls.
    Of course, what helps one person doesn't always help another, but it might be worth a try. Thinking of you. - Lori (Team Member)

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