PLMD WHILST AWAKE

[dickJones]

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.

[nightdancer]

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.

[dickJones in reply to nightdancer]

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.

[Suckerbeagle in reply to dickJones]

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,

Jeanne

[Pippins2 in reply to dickJones]

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

[LoisTonya]

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.

[patteran]

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

[SLMCP]

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?

[patteran in reply to SLMCP]

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

[Pippins2 in reply to SLMCP]

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

[Lmoutray in reply to SLMCP]

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.

[StephJH in reply to Lmoutray]

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?

[Ntwlk18 in reply to StephJH]

I'm 43. I feel like finally someone has described what I deal with pretty much everyone is not familiar with periodic limb movement disorder while awake... I get this quite frequently a month more so around my period. It does feel like it's getting worse or has gotten worse

[MayaG in reply to Ntwlk18]

Me 3. I'm 35, can't find any info on having PLMD while awake and this is driving me crazy. I always though I had Restless leg on one leg, but discovered recently that with RLS the movements are not involuntary and mine sure are. I can not control, it is a muscle spasm for me and then I feel like stretching and moving my legs help to stop the spasms for a while at least... I read somewhere that it could be iron and magnesium deficiency... I just found it really funny that you mentioned your period - I never related the 2 things but here I am researching PLMD and RLS while suffering and while on that time of the month 🤔😩

Have you had any luck treating this?

[Suckerbeagle]

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,

Jeanne

[Daragh]

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:

rls-uk.org/#!what-is-rls/c5mn

[Fiona_P in reply to Daragh]

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??

[patteran]

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!

[pmacs]

I have PLMS, I have been suffering for 10 years now... When it becomes really bad I go take a hot shower, use Dr.Teal Bath gel, then put Dr. Tral lotion on my back... It has help a bunch... But, the whole body shaking can be exhuasting. My husband hates to see me suffer like that.....

[Smape1974]

Oh my yes. Until you, I had not heard of anyone else who has plmd while awake. I started out years ago with the regular old fashioned plmd that occurred ONLY while sleeping and woke me briefly now and then. Eventually I developed RLS as well. Now, my plmd is so severe that it occurs all hours of the day and night. My entire leg from the hip down jerks violently. Mostly in my legs but occasionally in my lower arms as well (arm movement ONLY occurs while sleeping) The jerking leg movenents only occur if I am sitting, reclining, or laying down. If I am up moving around, they will not jerk but I do feel a tightness in my lower legs and I know that if I relax and stop moving my legs the jerking will start. My legs sometimes actually hurt from all the muscle contractions each day. This constant plmd is anxiety provoking and anxiety only increases the number and severity of the twitches. It's good to knowI am not alone in this.

[DocUndy]

I'm a 59 y/o male who has had this intermittent PLMD awake at sleep onset (also present during a sleep study done in 1998) for over 30 years, however, recently it has become an almost nightly occurrence. My symptoms are almost always accompanied by gastric pain/discomfort that is usually mild but can also range to moderate and severe. In my case, the leg jerk predominantly affects my right leg, but occasionally it can affect the left leg.

I get rhythmic jerks around every 15 seconds on average. The gastric upset/leg jerk will usually commence within 15 -20 minutes after lying down to go to sleep, and then it is severe enough to prevent sleep onset. I've also noted that on long haul flights, the same symptoms can occur after being seated for about 30 minutes or so into the flight.

I had basically tolerated these symptoms for most of those years as they were intermittent, however, around 2 years ago when they became more frequent, I scoured the internet looking for possible explanations and initially thought that I might have RLS. Following some brief correspondence with Dr Mark Buchfuhrer, he suggested that I probably had a form of PLMD. Armed with this cursory diagnosis, I approached my doctor and he prescribed Pramipexole at 0.25 mg/night. I found this dose to knock me out the next day and titrated the dose down to 0.625 - 0.125 mg per night around 30 minutes before retiring for bed.

I find that this dose range is extremely effective in resolving both the gastric and the leg jerk symptoms. That pramipexole settles my gastric problem is unusual, because it is actually known to cause gastric distress. I also have a feeling that the discomfort/pain is somehow related to gas, as symptoms tend to occur on lying down. I managed to rule out excess acid, from taking all sorts of antacids and proton pump inhibitors with zero effect.

Dr Buchfuher cautioned me about the potential hazard of Augmentation developing over time - and also the emergence of RLS in addition to the present PLMD.

For this reason I am a bit paranoid about using the dopamine agonist for the long term.

Although I have responded to this low dose of pramipexole up until now, it is possible that I may need a higher dose to achieve the same effect in the future. If that situation ever arises, I would seriously like to explore using an opioid such as Oxycontin (oxycodone here in Australia)

Does anybody here have any information regarding the lowest dose of a dopamine agonist that induced augmentation? It's my understanding that augmentation usually occurs at higher doses and following longer term administration. Any idea would be greatly appreciated, thank you.

Cheers Andy

[7cat]

I also have plmd while awake. It starts in the evening after I sit down to relax. About 1-2 hours later it starts. ( I also have fibromyalgia) The pain starts, I can't get comfortable, I shift and move around on the couch non stop. Sometimes I'll have to "roll" my shoulder, or move my arm, or stretch my neck, or flex my thigh muscle or rotate my hip. Any one of things occurs either individually or a couple of them simultaneously.

Some nights I go to bed, fall asleep, then wake up an hour later, and be awake for a couple hours with those symptoms.

I take 1800 - 2400mg of gabapentin however it doesn't seem to make much of a difference. It just makes me "groggy" enough to try and get into bed and try to sleep.

Every night before I get into bed I place 2-3 tens units where ever I need them the most and turn them on to be able to fall asleep. It helps.

Also you can turn them back on if you wake up with symptoms. It will lull you back to sleep.

I've started taking (REAL) cbd. Get it at a place with professional educated associates who can explain the differences in each one (like isolate vs full spectrum) The good stuff will run you about $100-$190. I've only been using it regularly for a week and a half but I believe it helps some. I was told that it takes a few weeks for your body to start to get accustomed to the cannibinoids.

I'm not sure if any of what I've shared with you makes you feel less alone or not, but maybe someone else will read this and feel better.

Bottom line: I'd like to continue experimenting with dosage and frequency of the cbd because I believe holistic is the way to go. And I haven't experienced any side effects whatsoever.

Also, the Gabapentin just doesn't "work" the way you want/need it to, so what have you got to loose by trying something all natural?

Love to you 🙂

[bill54321]

You may have Rare movement Disorder---Dystonia and PLMD or RLS are at left anf right. UNLESS your arms or head is invovlved All are myoclonic disorders. My advice.. When you doze during day, wake up and walk. Massage the top of your feet and rub your legs before sleep. Quit opiats. Use tylrnol. DC ropinrole(with doc approval) you my be aumentating with day time symptoms. ANY AWAKENESS JERKS ARE NOT RLS?PLMD. If confined to legs with onset with dozing, it is RARE MOVEMENT DISORDER and no one has a clear anwser. So massage and exercise before bed and quit opiat and strong RLS drugs. I DID>

[dickJones in reply to bill54321]

I have PLMW. The flexions are initiated by sleep and they wake me up. Unless walked off by ambulatory or stationary walking, the flexions - big toe, foot, ankle, calf into knee and thigh - will continue.

[bill54321 in reply to dickJones]

Read my notes

[pianoplayerPLMD]

Hi, Dick, I noticed your reply this week to my post, thank you. It was your post of 6 years ago about having PLMD whilst awake which rang a clanging bell for me and made me think about joining this support group. I'm so glad I did, as I am learning LOTS about it, there seems to be a dearth of info generally, and GPs seem to know nothing. I'm in the UK by the way.

It seems very odd to me that there is not really a consensus on what PLMD is....and especially that PLMD is nearly always defined as periodic limb movements in sleep. And especially that the person is not aware of the movements though they can cause the person to wake. I never see the definition that I experienced when I first had it, which is that I ONLY had them when awake, and they STOPPED me from going to sleep.