Does anyone out there have Periodic Limb Movement Disorder - PLMD - whilst wide awake? Although normally I'm woken up from sleep by the limb flexions associated with this disorder, I also get them during the day if I drop off for a while. On these occasions I will wake up and then shortly afterwards the characteristic toe/calf/thigh flexions will begin. They then carry on until I walk them off.

15 Replies

  • HI, I do not have it while awake but a few people here do have it. I know one woman who will answer you when she gets home. But, yes, it can happen sometimes while awake, usually in sleep, but it does happen. ;) You are talking about involuntary movements right? Just want to make sure. ;)

  • Yes, the standard weird sequence of the big toe lifting up followed swiftly by a full muscular flexion of the leg, all of this accompanied by the tickling, crawling sensation familiar to RLS sufferers.

  • You nailed it, dickjones. No one understands how awful this is because it's not exactly pain, but can drive you out of your mind while it's going on.

    Good wishes,


  • If the RLS sensations are present then it is RLS not PLMD.x

  • Yes, I get them as well as the rls. I take ropinorole before I go to bed but the leg jerks usually awaken me at about 3 or 4am. I don't know if it's connected but it has been somewhat better since taking 3 pills that combine vitD, calcium and magnesium at bedtime. The trouble is that - when you think you've sussed it, it is inconsistent.

  • Hi Lois. Thanks for the reply. Although the causes of primary PLMD are still not clear, magnesium deficiency is a not uncommon contributory factor. If you haven't given it a go already, you might try upping the magnesium dosage. It doesn't work for me, sadly, & I'm currently working my way through the various options. Anti-convulsants don't do it, nor do benzodiazepins, so I'm giving the trancs a go. Floating closer to the dopamine agonists each time!

    Best of luck Dick

  • I get my RLS whilst awake at times, in my arms, and yes in the evening sitting watching TV,usually my legs then. Don't know if the arm problems would be called PLMD or RLS?

  • RLS, most likely. PMMD is almost always an involuntary flexion of toe, foot and leg.

  • SLMCP RLS ONLY occurs whilst awake not whilst asleep. Jerking and kicking in your sleep is PLMD. IF you get the RLS sensations in the arms then that is RLS. Hope that helps x

  • I have had RLS since I was a small child. My grandmother and mother also had it and now my two grandchildren. I'm used to dealing with my legs, but now my right arm will jerk when I get tired AND the muscles in my legs continuously flex and relax 24/7. They never stop. Anyone ever heard of this? So far I haven't found a Dr who knows what is causing it.

  • I am in my mid 60's and have had RLS and PLM's for over 15 years and it's gradually getting worse. I definitely have my PLM's while awake particularly relaxing watching tv in the evenings and when I can't sleep at night. They are now quite violent and affect my legs, left arm and head which turns to one side. My legs shoot up onto the air! Has anyone else noticed that focusing attention on the sensation on one particular limb can make the next jerk occur there? Also does anyone else get hot feet in bed with the RLS and have to keep finding cooler places in the bed?

  • Sounds more like RLS than PMLD. PMLD usually occurs only while sleeping. And it usually does not wake you up. Strange. Not so much fun for a bed partner.

    The symptoms you describe are similar to my RLS symptoms. I can sit there watching one of my legs go through some pretty weir contortions–—and it's not me "doing it". Myoclonic jerks from the hips follow the limb flexions etc. then I get the heebie- Jeebies.

    I thank God my meds work.

    Best to you,


  • Periodic Limb Movement Disorder (PLMD) when awake is called PLMA and when asleep it is called PLMS. Is it very common for people to get PLM when awake and these jolts are often confused with RLS.

    You can learn more about PLM on our website:!what-is-rls/c5mn

  • Thanks for the info. I definitely have RLS but by far my biggest cause of distress is involuntary jerking of my legs while awake. Typically while sitting for extended periods in a lounge type setting, and usually in the evening. Keeping at least my feet moving seems to relieve the symptoms, but not always. I haven't sought medical help as it has been met with a fair bit of teasing from family who think it's funny... so I dismissed it as a silly quirk. Occasionally I have hot patches on my legs, as though I'm standing/sitting near a strong source of heat but only in an area about 3cm in diameter - does anyone else have this too? I've read reports this could be from lower back, so may be unrelated??

  • Thank you for the link.

    Over time I must have accessed just about everything that the Internet as to offer on PLMD! Sadly, because of the dearth of research by specialists & the low level of interest on the part of general medicine, the same generic data turns up again & again, most of it insisting that the condition is invariably both nocturnal & unconscious because sleep-based. I'm aware of PLMA as an acknowledged phenomenon, but beyond the odd terse statement that it exists, my search for further information - notably what, if anything, differentiates it from the standard form - has come up with nothing. My GP is supportive & responsive concerning my proposals regarding treatment. But he knows next to nothing about the RLS/PLMD spectrum & as a busy doctor trying to turn his daily caseload of individual patients around in 10 minutes, he hasn't got the time to sweep the Internet.

    Hence my recourse to forums in the hope that one day I'll come across somebody who shares my particular version of PLMD & thus has an understanding of its peculiarities. Until then I guess I'll have to wobble on alone!

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