RestlessLimbs

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Rick · Jul 16, 2026 · 💬 1 (last 21h ago)
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 · 21h ago

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 · 1d ago · 💬 1 (last 21h ago)
What's the strangest thing you've tried to get relief? No judgment here. Sometimes the odd ones are where people find something that helps.
Bridgett Palmer · 21h ago

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.

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Rick · 3d ago
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.
Rick · 4d ago
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.
Rick · 6d ago
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.
Rick · 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.
Rick · 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.

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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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