RestlessLimbs

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Rick · Jul 16, 2026 · 💬 2 (last Jul 29, 2026)
If you're new here, welcome. A good first post: when did your symptoms start, and what's one thing you wish someone had told you early on? Even a short version helps someone who's just getting started.
Bridgett Palmer · Jul 27, 2026

The first time I can remember struggling to sleep with that hard to describe, uncontrollable discomfort was when I was around 13 or 14 years old. However, the severity of symptoms have ebbed and flowed since then. I wish someone would’ve told me about compression socks back then!

Rick · Jul 29, 2026

Interesting! I have never tried compression socks! Do they really work for you?

Rick · Jul 26, 2026 · 💬 2 (last Jul 29, 2026)

What's the strangest thing you've tried to get relief? :)

Bridgett Palmer · Jul 27, 2026

I was at a residential treatment facility for an eating disorder and we could not exercise. We had to wait to be cleared for that and so sometimes I couldn’t even get a 10 minute walk in for several days. This really made my RLS worse, almost unbearable at times. While seated in a group therapy session, I was trying to alleviate that uncontrollable feeling by making small circle motions with my legs and kind of flapping my arms at my side. I was desperate! I ended up getting some exercise privileges taken away because they thought I was trying to burn calories during group therapy!! Thankfully, a nurse at the program knew about RLS and advocated for me.

👍 1
Rick · Jul 29, 2026

That must have been miserable, Bridgett! How often do you typically get RLS symptoms and have you spoken with a doctor about treatment? It makes a huge difference for me - I don't think I would ever get sleep and be completely miserable without it.

Rick · Jul 14, 2026 · 💬 1 (last Oct 22, 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.

Mary · Oct 22, 2026
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!
RestlessLimbs Team · Jul 24, 2026
Who in your life actually understands what you're dealing with, and who doesn't? Please share how you've handled the people who don't get it.
RestlessLimbs Team · Jul 23, 2026
What finally got you a real answer, the right doctor, a specific test, something you read? A lot of people spend years being told it's nothing, and I'd like to gather the turning points in one place.
RestlessLimbs Team · Jul 21, 2026
If you've lived with this for a long time, what would you tell someone who was just diagnosed this week? Please share the thing you most wish you'd known.
RestlessLimbs Team · Jul 21, 2026
What does a good day look like for you now, compared to your worst stretch? I'd like this group to hold some hope alongside the hard parts.

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Everyone here has a story worth telling — when your symptoms started, what has and hasn't helped, what you would tell someone newly diagnosed. This group is where members share their stories in their own words.

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