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What is the most unhelpful advice someone has given you about RLS?

  1. Thankfully I haven't encountered too many experiences so far but my old GP said I just need to exercise more.

    More often than not, I am told that I am too young to be sick.

    🌈🦄 Ray (Team member)

    1. I have been using Sifrol (pramipexole) for almost 18 years and it’s the only thing that works. I started with a 1/2 (0,09mg) and am now at 2 (3,6mg). Sometimes it’s not enough and I take a sleeping pill or Xanax but even that didn’t work the other night when I had my worst RLS ever. My neurologist suggested that I take Rivotril in addition to the Sifrol but it’s the same family as Xanax and I don’t want to become dependent on it.

      1. thanks for your concern Dawn. Most of the time I’m fine with my 2 Sifrols (0,36mg). It’s just occasionally that it’s more difficult. I’m already thrilled to have discovered Sifrol 18 years ago after my second pregnancy which really triggered my RLS.

      2. I have used sifrol for about 20 years now. At one time I experienced augmentation and switched to lyrica (pregabalin). Eventually I was able to go back to sifrol and now I take both together. It is a really good combination for me. Like you, I was very hesitant to take benzodiazepines as dependency and tolerance seems like such a big issue.

        Cheers.
        Simone (RLS Team Member)

    2. As I said I have tried most everything else apart from Sifrol and nothing works. All the exercise and massage and pills and potions are a waste if time.

      1. The only thing that works for me and I have tried everything is the drug Sifrol. I am getting a bit worried as sometimes I will have to up the dosage and hope it continues to work. My neurologist says it is safe to go up to 4grams and I am only on an 1/8th of that. I am very interested in my ferritin levels which at 23 I believe are far too low

        1. I hope this medication is able to provide some relief for you , keep us posted on how you are doing. Have you tried any of the alternative treatments on top of the medication as well? Warmly, Kristin (RLS.Sleep-Disorders.net Team Member)

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