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Rick · Jul 14, 2026 9:38 am · edited Jul 14, 2026

My story started with a doctor visit about 35 years ago where I was trying to describe what I felt in my legs. "You know, that squirmy tickling feeling we get in our legs when we are in a long car ride and our legs start bugging us and we have to move them?".

I remember looking at me oddly and saying "No, I don't know what that feels like, and that's not normal for most people." I was literally surprised because I thought all along - as far back as I can remember as a kid - that everyone felt those sensations. Turned out... that was definitely not the case!

He started me on Sinimet, which gave me instant relief. It was amazing! I could finally sleep at night and my daytime symptoms were completely gone with this wonder drug.

Unfortunately that only lasted a few years and then my symptoms came back but even worse, and started earlier in the day. I started reading up on things and learned that was called augmentation and that it was time to switch to something else like Mirapex or Ropinerole. I have rotated between those two for almost 3 decades (augmentation starts to set in for one of them, so i switch to the other for a whilte... and then back again when augmentation sets in again).

Restless Limbs is fitting for me because now those agonizing urges to move have traveled up my torso and into my shoulders and arms.

Have a story of your own?

Share what your experience with restless legs or PLMD has been like.

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1 reply

Mary · 4d ago
I hated bedtime as a child and I realized that I had restless legs back then. But it wasn’t until I was an adult that I realized something was wrong. It was hard for me to understand how some people could just get tired and go to sleep. It was bad enough that I learned to resist bedtime and developed bad sleep hygiene. However “sleep hygiene” isn’t that all that helpful for restless legs. I learned to get along on very little sleep. When I was in my forties, I went to a sleep doctor and was prescribed Mirapex. That seemed to work and then years later gabapentin was added to it. I’ve tried distraction, exercise, lotions, and I’ve slept in bathtubs and taken thousand of showers. I’ve walked out of movies and church services with restless legs. I tried restricting caffeine. Now I am at a cross roads again at the age of 70 with my restless legs getting worse and seems to be combined with insomnia where I wake up often at night. I am also on an estrogen inhibitor (for breast cancer) which can exacerbate poor sleep. I hope to get another sleep study soon. The loneliness at night while everyone else is sleeping can add to the misery. My life has been very good but I’m ready for some sleep!
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