Does Periodic Limb Movement Disorder Exist?

[airbornestud]

Mine are so bad that I only get 4 to 6 hours of sleep every 3 days. It's not just my legs, it's my arms & hands. They move violently & I have no control over it. It's pure hell. I just want to sleep normal but I can't even fall asleep for 30 seconds before my whole body violently jerks awake. Every video on here that I've seen is not even close to my condition. I wish I could just sleep through it.

[RockinMommy]

I'm awake at midnight bc my boyfriend has been moving his left leg every 10-15 seconds... he also has sleep apnea but he is fine when sleeping on his side... his leg is still moving. It's real and it's annoying.

[oldmetalheart]

I was recently diagnosed with PLMD. When falling asleep I have no tingling or kicking, but it feels like a seizure radiating out from my torso. Thank you for this informative video.

[robertnewell]

This is very interesting to me, although I am a little confused. I have followed many of your RLS vids and likewise found them insightful and thorough. I have PLMD, and the defining property is that my limbs twitch when relaxed and sleepy. I have no urge to move them and thus fail the RLS criteria. When I am going to sleep, this is perhaps the worst time, as the twitching stops me getting to sleep many times. My understanding is that this is a common complaint of people with PLMD. I find it hard to see how anyone could fall asleep with their legs spontaneously contracting every half a minute or so. My neurologist asserts PLMD is likely caused by interference with dopamine transmission, as has been suggested for RLS, and prescribed an agonist, which I could not tolerate. Clonazepam is some help, but not much. Sleep hygiene has been important, but once again does not help if one's legs keep twitching at or near the point of falling asleep. Thanks once again for your many sensible contributions.

[jamaicanapple]

Clearly you are a kind and generous doctor,  for that reason I thought you should know that after watching this video my husband now thinks that PLMD is not a real diagnosis, that his repetitive sleep movements are totally normal and he references this video as evidence to avoid finding a solution.

I don't think this was your intended message considering how you have responded to other commenters.

Just thought you should know in case you wanted to tweak the title, or change something about the video, so this doesn't happen to others with spouses that interpret the video this direction.
Thank you

me😒😴him

[activeal]

My PLMD seems to be caused by a lightening bolt of electricity from my mind to my leg - specifically the knee. This results in a pronounce jerk of the leg that is impossible to sleep through. It repeats periodically from 15 to 50 seconds. I have to stand up to get it to stop and my brain is so wired that all sleep drive is gone.

[susanhouser]

I am awake right now at 4:30 a.m. and have been all night long because my feet won’t stop spinning around which definitely is causing day time sleepiness. I because inexperience it nightly along with extreme daytime fatigue definitely believe in PLMD.

[barbaraadams]

My bed covers are in a wad in the morning. My husband complains of being kicked in the night. My son's bedcovers are merely folded over. I have had 2 sleep studies. One at the university of WI. Another a few years later at a seperate clinic. Both confirmed it is PLMS. My brother has it, but to a much lesser degree. Non restful-deep sleep can cause many problems. Tiredness during the day which leads to other problems...lack of attention and clumsiness.

[jeancragg]

I am extremely grateful for this helpful information! I am a 78 year old woman with the symptoms of PLMs whilst absolutely wide awake and trying to sleep.
However, I don’t have RLS.
I had a PSG 6 years ago, and have had various RLS medications, which have not worked, which now makes sense. I would be very interested to know what sort of medical procedures would be available to me in the UK!

[ScuffedF]

I'm not interested into whether it does or does not exist.

I simply want a solution that doesn't require me to be on a medication which could potentially give me cognitive impairment later in life or bad side effects which I currently feel like I'm experiencing.

This issue has disrupted my life incredibly.

[genx]

PLMD destroyed the prime years my life, contributing greatly to going on disability at age 53. Movements have to meet specific testing criteria to merit a diagnosis - it's not some random opinion. As to whether the movements contribute to symptoms, a study with arousals caused by the PLMs is a pretty sure indicator of their adverse impact on the person's well being. I spent a decade in misery before I found a doctor who took it serious and helped me work to get better. I cannot tell you the years of desperate tears I cried when doctors were dismissive.

[carolinefawcett]

I just came back from seeing my specialist. He says he doesn't know what is wrong with me and is sending me for a nerve conduction study. I do have a pinched nerve at L6. I wish I could post the video of what happens. I feel my leg tightens like a tourniquet and then my leg spasms and if I'm standing it buckles.Tge feeling is horrible!

[macknumber]

I had a sleep study and I had 99 total arousals. 28 of which were PLM....they want to treat the PLM and don't want to address the bigger elephant in the room....

I suspect the other arousals (which made up 75% of my total arousals) are UARS related and I do not think the study looked for RERAS....sad state of affairs the medical field has become....why would they not look for something that has been around for 40 years and is a diagnosed condition....complete waste of money on this sleep study

[lisamd]

I have PLMD jumps and kicks in my legs during the daytime. I'm 59 and I have had this for over 25 years. So to think that there is no such thing as PLMD and jerking movements in the legs, that's wrong and I'm living proof of it. This happens to me several times a day, every day, every week, every month, etc. I have RLS that happens during the night but the PLMD happens to me daily, during the day, every day. So, to say it's not a real thing Im here to tell you it is, and it does exist.

[susanhouser]

Here I am again a year later unable to sleep because of foot jerking and spinning around finally stopping around 6 a.m. My Dr will only prescribe dopamine agonists which eventually worsens the condition. 80 years old suffering with this condition for 30 years!

[sarahholmes]

I was misdiagnosed with RLS but it is plms I have, burning debasing in my legs first and then wham the first muscle contractions start, always buttocks and hips first, then my thighs, occasionally in hands and shoulders. Episode's last 8-10 seconds, ate about 15 seconds apart, last 4-5 hours every night. I'm 51, came on all of a sudden, I do have a auto immune disease so I would be interested in this doctors comments on this please

[SoraShadowdancer]

You keep saying that it doesn't exist when it clearly does. The way you are phrasing it makes it sound invalidating. Like our problems aren't real. But I think maybe a way to rephrase your message is that while PLMD is something that can be diagnosed it may not be the root cause of someone's EDS.

I would like to know why my body wants to sleep for 14 hours every day and why I need 9 hours of sleep in order to feel rested enough to drive safely. I want to know why my body twitches all the time when I am sleeping. My hands move. My arms move. My legs and feet move. I had 105 leg movements per hour in my last sleep study. ONE HUNDRED AND FIVE. No wonder my ex husband didn't want to share a bed with me towards the end. 10 years of being kicked and I would've slept on the couch too.

[julianabradfordmusic]

The shaking of the leg definitely exists. Whether classified as a disorder or not, I can attest it exists 🥲😩 my husbands legs shake every night, all night

[MrDancingGODZILLA]

I have restless leg syndrome and was also diagnosed with PLMD. I am 28 but was 26 at the time of diagnosis. They said my legs jerked 36 times an hour (I’m assuming it was averaged). I do have insomnia as well, but even with medicine which will allow me to fall asleep and stay asleep, I’m tired with 2 hours of waking up.

No matter how much sleep I get, I’m still prone to fatigue and seem to rarely feel that I’ve gotten good sleep. But I have incredibly vivid dreams, so I must be getting REM sleep.

This causes such bad brain fog for me and on two occasions I’ve found it hard to keep my eyes open at work.

Do you have any thoughts on this?

[colinfidgeon]

Hi Dr Berkowski. I suffer from excessive daytime sleepiness. I have suffered from this for more than 20 years. I typically require about 12 hours sleep per night, and I still take naps during the daytime. I started taking venlafaxine for depression about 20 years ago. I believe the tiredness is a side effect of this medication. But I cannot stop venlafaxine because severe depression always returns and I am incapacitated. I know the venlafaxine causes me to do some severe kicking and twitching in my sleep. I am not aware of it, but I have been told that I do this. My girlfriend refuses to sleep in the same bed because she can’t sleep. I think the kicking and twitching is the reason that I am so tired all the time.
My Iron level is 20.9umol/L. My TIBC is 54.7umol/L. My Transferrin Saturation is 38%. After these blood levels were measured, I started taking a dietary Iron supplement. But the tiredness is still there. I’m going to ask my doctor to start me on Gabapentin Enacarbil. Do you think this is a reasonable approach in this circumstance? Is there a better option that I am missing? Of course, I’m not asking for a medical opinion. Just a note on what might work for someone in my circumstances. I will then discuss everything with my GP.
BTW, I definitely don’t have sleep apnoea. I’ve been tested for this. Also, I don’t have restless legs.
I’ve been trying to find a solution to this crippling fatigue for 20 years. I would be grateful for any quick pointers you might suggest. And I promise not to ask any follow-up questions. 🙂