My Nonprofit Reviews

I am almost 75; my first extreme episode of RLS occured about 7 months into my first pregnancy, at the age of 22. Although my grandmother and my mother both had what they called "the heebie-jeebies", I did not associate my symptoms with them. Much like another reviewer mentioned, a small blip in Modern Maturity (AARP magazine) in the early '90's finally gave a name to what I had suffered continually with for over 30 years! By then, I had discovered by trial and error that limiting caffeine and sugar, and regular exercise helped the symptoms, but spent untold hours watching TV or reading on the floor because I could not sit. Traveling became miserable; my husband finally moved into the guest room because I kept him awake due to getting up several times a night to do leg exercises on the floor, or to take a hot bath.

After learning that my misery actually had a name, and getting my first computer, I found the RLS website, with its interactive forum. Shortly thereafter, I also found a neurologist at a nearby teaching hospital who was beginning to treat patients like me. Fortunately, I had learned that some pain meds greatly relieved the symptoms, and he was willing to prescribe low doses for my worst nights.
Then, along came all the research showing that Requip and other DAs were also effective for many RLSers.

For the last 10 years or so, I have been able to combine a low dose of ropinerole at night, with a low dose of different types of pain meds mid-afternoon (I alternate periodically to lessen the chance of addiction and rebound). Most nights, I sleep 7-8 hours, with only occasional break-throughs. I do often have early morning fatigue, which my doctor says is probably caused by the ropinerole, but a small price to pay for sleep! Of course, I still exercise, use very little sugar and caffeine (especially after noontime), and hot baths are my go-to if I forget to take my meds on time.

Thank you, WED Foundation, for keeping us up to date with helpful information, and most of all, for the continuing research. I have often remarked that everyone should have to spend one night with severe RLS, without medication.........then we wouldn't have to have so many conversations with others about what living with it is like!

More Feedback