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How long have you had RLS?

Mine began as a child (around 10 or so) but didn't get bad until my mid-twenties (first pregnancy). It's gradually deteriorated over that time.

  1. I first experienced RLS around 10 or 11 years old. I’m 60 now. I did not even know there was a name or diagnosis for it until 1999. In 2004 I had a sleep study; diagnosed with extreme RLS,PLMDS, and REM behavior disorder.
    Was put on all the dopa meds; Requip, SinemetCR, and Mirapex. Only made the RLS worse.
    I should mention I have had several severe injuries to my back and neck as well as several other broken bones and surgeries. When I was treated with an opioid post surgery the RLS stopped. But my career does not allow for taking this medication. So I was prescribed huge doses of Neurontin, Baclofen, and Ibuprofen. This barely made a dent in the symptoms. If I slept more than an hour a nite I considered it a miracle.
    After a failed second back surgery I was put on OUT for pain. It worked perfect for stopping RLS. I also found buprenorphine to be highly effective as well.
    I have tried every natural recommendation possible. But in my case only a med that works on the mu receptor is effective. Without it I walk for days and nites on end. I have fallen asleep while walking and injured myself by running into furniture. After several days and nites of this I will also start to occasionally see and hear things that are not there.
    The worst outcome was the loss of my piloting career because of RLS. I flew for a major airline but I could no longer function safely because of extreme exhaustion. I had to choose to go back on an opioid to pretty much save my life…RLS has affected my life in horrible ways. I would not wish RLS on anyone.

    1. I have had RLS for 42 years. Inherited it from my mom.

      1. I’m sorry you struggle. Have you found anything that helps at all?


        Cheers.
        Simone (Team Member)

      2. Requip has been my saving grace. I take both an extended release at night and an immediate release for daytime. Over the years, I’ve tried just about everything available.

    2. I've had RLS for 10 years or so. I also have peripheral neuropathy in my legs and feet, which makes it that much more uncomfortable. It's been getting worse recently. I'm still trying to find a treatment that helps me sleep!

      1. I wish you the best of luck in your search for treatments! Have a look around our website and see if there are some new ideas that might help. Have you had a chance to speak with your doctor?


        Cheers.
        Simone (Team Member)

    3. When I was being tested for my sleep study is when I was diagnosed that was a 1 1/2 years ago

      1. Hi , thanks for sharing. Had you heard of RLS before your diagnosis? Best, Allison (Team Member)

      2. yes I had heard it before

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