Newcomer - Restless legs AND arms !

Hi, I've just found this forum which I think is great! I've had RLS since my early teens (now 59) and now it has worsened in my arms and right up inside my pelvic area. It is driving me crazy - this is my 5th night in a row walking the floor. I don't just have it at night - it's a 24/7 thing with me. I take Ropinerole 3mg x 3 times daily but have been taking quite a bit extra for months now although to be honest I don't find it very effective. I have a long list of illnesses and find it so hard to deal with life in general due to depression and lack of sleep. Any advice or tips on how to get better relief from RLS would be gratefully received.

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  • Search Augmentation.

  • When you keep upping the dopamine meds , which Ropinerole is one of them, it will do the opposite and make your RLS worse, called augmentation of symptoms. Put "augmentation" in the search box for this group and you will find hundreds of posts on this subject., More is NOT better when it comes to these dopamine meds, sorry to say. have you ever tried any other med?

  • Hi glad you found the forum we are all I the same boat,you are on a very high does of Ropinerole that will be your answer I thought 4mg was as high as you went,I am afraid it's back to the docs I hope they are nice to you and understand what's the matter

  • There are some of us who have been successful with using non-drug approaches and treatments - even if we have had RLS for a long time and it has been very bad. If you are interested in reading about some of the things we have used, let me know and I will tell you.

    Not knowing your circumstances (ie. if your RLS was caused by surgery or spinal damage, etc,) I can only offer info that MAY be helpful to you. But, it never hurts to hear the options and go from there.

    I have never used drugs for RLS, so I do not know about augmentation or other issues pertaining to drugs, etc. For some people, they find them helpful, or the only thing that works. For others, not so much.

    Or else, you can scroll back thru the postings and see what you come up with from those of us who use other treatments.

  • But also want to mention that these other things do not interfere with drugs, if you still need to take them. They are just helpful to knock down the severity of RLS. Since I have done them mine has gone from - on a scale of 1 to 10 - sometimes 15!, down to about 1 to 2. Much more manageable and not so disruptive.

  • I was on Clonezapan and they were great but a few years down the line my body got used to them so they didn't work . I am now on Pramipexole and they are doing the job touch wood. someone gave me a newspaper with a writeup by a doctor saying he gave them to his patients and I took a copy to my doctor and she gave me some to try. Result Magic. I can now go to sleep at night. I take them 1 hour before I go to bed and then take half a cocodamol when I get into bed. If I get tired and don't go to bed RLS gets really bad. jonjo

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