RLS Sufferer

I have had RLS since my twenties. In my 40's it got to the point it was waking me up at nights and it was in my shoulders as well as legs. I was given Ropinirole, that helped at first with 1 mg, but I found I had to keep increasing the dosage and then found out the effects it had. I tried one day to stop cold turkey, not a good idea as it was the worst 48 hours of my life. Now I know how addicts feel when they withdraw. I found the UK supplement Quiet Legs and that has gotten me down to half the dosage I was using. In the meantime, I've also upped my Magnesium, use infrared lights on my back and shoulders (this truly helped to lesson the time and severity of the bouts of RLS). I also have had some Cranial-Sacrum work and that helped to relieve the symptoms and I had some truly restful couple of days after. I had gone to Mayo Clinic and all they said was this starts in the ganglia of the brain, where Parkinson's originates, but you won't get Parkinson's and if you get 75% relief from the medication that is all they hope for. As well as the supplements and treatments I try to be sure I get plenty of rest as when I'm tired its the worst or when I'm ill.

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  • Hello andwelcome to the group. Well done on getting down to half your dose of Ropinerole. As you discovered going cold turkey off a Dopamine agonists med is not to be recommended! I managed to half my dose but had to have a back up med to get off it completely. What dose are you on now? Have you had your ferritin iron levels tested?

    Interesting about the infra red lights helping I hadn't heard of that before so thankyou for telling us about that --everything is worth a try!

    It's true only a lucky few seem to get 100 % relief from any method. My meds help me 90 % of the time but it does take a combination of meds to achieve that,

    Take a look through some of the old posts there are many relating to coming off Ropinerole (Requip ) and Mirapex ( Pramipexole ).

    I hope you find the group helpful.

    Pippins2 x

  • Thanks. I'm on 1 1/2mg of the requip and want to take another step down. As far as I know from all my blood test, my iron is good if not a bit high. The infrared lights are actually designed for neuropathy, but it has helped the RLS, go figure. its called DIY Neuropathy. What is your back up med? I'm trying to go homeopathic if possible and essential oils. I know that I can't have pedicures or massage as it triggers the RLS. I'm glad to have found this group, very helpful.

  • Many take Codeine or Tramadol to help them get off the Dopamine Agonists x

  • Hi Yohlense, put the name "Mark370" in the above search box and with your doctor's permission follow exactly what he did. I don't think you need to run out and get your ferritin tested, just get your doctor's permission. We tell people this because there's about 1 person per thousand (maybe even less) that has an iron over-load disorder. Anyway's, Mark is RLS free and DA free in all of about 48 hours. Good luck. You can also put the name "Yuna" in the above box or GillRLS or Bganim or Bkc or DicCarlson.

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