Restless Legs Syndrome (RLS) Discussion Board

I’ve struggled with a variation of Restless Leg and Periodic Limb Movement for 15 years. It’s similar but different from RLS and PLM— it’s while I’m awake, without uncomfortable sensations, and without the typical movements or intervals of PLM. The involuntary jerking or kicking is what keeps me awake. I was diagnosed by the John Hopkins RLS Clinic with Nocturnal Quiescegenic Dyskinesia. I put up a quick website with additional information and short video. www.kicking-legs.com Do other people deal with this? What’s it been like for you? How do you cope with it?

I’m a 52 year old man, otherwise healthy, and have tried 10+ meds (some with benefit, then with decreased effectiveness or augmentation). I struggle with a persistent level of fatigue. My previous evaluations before John Hopkins appeared normal (i.e. 3 neurological evals, 2 sleep labs, 1 MRI).

This message is cross-posted on YouTube, Southern California RLS, and I posted here once before 3 years ago. Thanks, Erik

Jesterfest: Read your post. I have RLS for maybe 40 years. Tried everything under the sun. I am now on Mirapex, take Tramadol or Vicodin if needed. Sometimes I have break throughs that went I take one of the other meds.

What your post reminded me of was when I had a whole knee replacement. The surgeon was very supportive in that he didn't give me anything that would exacerbate the RLS. But after the surgery, as they were trying to get something to deal with my pain. I was having a lot of pain and nothing they gave me helped until they gave me dilulid. In the meantime it was like my leg had a mind of its own. (The one that had the surgery was immobile). It would kick in the air all on its own. That had only happened one time before, when I was in the hospital and had a heart cath. and the same thing happened. I always wondered why.

Does this sound anything like you are describing?

I hope I described this clearly. Ask if you have any questions.

BETTY/WV

Erik
Nice website. Looks a lot like sleepdancer when she was augmenting, only milder. And you were awake whereas I think she was asleep. I think you;ve done a good service setting up that very professinoal-looking website for this disease that seems related to RLS but distinct from it.
b

See also sleepdancer's thread "Limb Movements while awake" in this same category "Special Populations"

Thanks for the website and this thread- I think I have the same variation.

Usually starts when I'm trying to go to sleep, when one or both legs start kicking vigorously. I don't move as frequently as you, but the movements are bigger, and it can last from a few minutes to several hours. It can also wake me at intervals through the night.

I quite often get it late evening if I'm sitting and relaxed, and very rarely when I'm sitting in the day. Worst is in work meetings, where I do a huge jerk and sit there hoping no-ones noticed.

I thought this was normal plms 'til I saw your website- do hope you keep it going, and would love to know if you've found a treatment that works!

mopsa: That sounds like a sleep-disrupter for sure. Are you taking anything for it? Has anyone diagnosed you with anything?

Hi Mopsa,
Thanks for posting. Your symptoms sound very similar. I am very curious about what you’ve tried and anything that’s proved helpful. And also Beth’s question.

I just saw there’s an article in the RLS Newsletter this month about the variations of PLM both while awake and asleep. My leg kicks or jerks differ from the “rhythmic extension of the big toe and bending of the ankle upward with flexion at the knee and hip” associated with PLM. What about yours? All the best, Erik

Hi. Been away for a couple weeks, just saw this thread. Yes, when I was augmenting, I had movements while awake enough to be aware of them, though I had to be in a very relaxed state, like close to dozing. Opening my eyes made them stop. Kinda made a game out of it - or should I say took it as a challenge - I'd wait till the movement peaked and open my eyes real fast to try to see my legs fall down. Managed it a few times.
I am still doing well using the TENS Unit for my nighttime leg movements, and remain off meds.