Periodic Limb Movement Disorder

I was diagnosed with severe PLMD in 2018 (although, my symptoms have been present for as long as I can remember.)

I was diagnosed by a neurological sleep specialist and have followed EVERY recommendation. I take Gabapentin and iron supplements (my iron levels are not low, but was told elevated levels could help). I follow his sleep hygiene schedule, rarely (I mean rarely) drink coffee or consume caffeine and have almost completely eliminated chocolate (I admit that I have a sweet tooth, but am rather disciplined!) Also, I take magnesium before bed because my GP thought it would help.
However, I don't feel any more rested.

The fatigue and exhaustion is unbearable. The headaches occur almost daily and at times, I get lightheaded. When I push myself, eventually my heart starts to race (even while sitting) and I find it hard to get enough oxygen. I get very warm and ugh...sweaty...when I'm lightly active (even walking less than five minutes) too. And, any exercise, no matter how little, exhausts me further. At times, it seems that I need two days to recover. Is anyone experiencing these symptoms?

Anytime I meet with the sleep specialist for a follow-up, he tells me that my symptoms are caused by my shift work. But, I had these same symptoms when I had regular nine to five (cue Dolly song) hours.

I can't help but think that these symptoms are an indication of another problem (or maybe we're not treating the PLMD correctly?) However, my blood tests always come back normal and although I was diagnosed with a bundle branch block, have been told that would not cause my symptoms.

I need a bit of guidance. This has impacted every aspect of my life. I stopped exercising because I can't function afterwards, I've had to pause classes and volunteer work, I've missed team sport games, cancelled social events and worst of all, have missed so much work that it's impacting my reputation (not to mention any future employment opportunities).

I'm grasping at straws to find a solution. However, first I need to know the actual problem.

Please help!

My neurologist thinks so. Eeg fi e, mri good, no plaques. Says unlikely seizures. Sleep study next but as people above said, my jerks don't happen in sleep. Anytime I am fatigued, lo g drives in passenger seat, had whole body myoclonic jerks after my first cardioversion. Noted by ER DOC. Started with legs, then arms hen involuntary situps. I've had them since about age 14, am 63 now and they seem to be getting worse. So very tired of being told it's RLS...IT'S NOT. Symptoms don't match. I believe it has somethi.g to do with my body's electrical system. I also have AFIB, familial. 2 ablations, now just medication. Luckily not in permanent AFIByet.

I recently saw a doctor with some peculiar symptoms. I’m having twitching movements at night for the last two months. It’s a quick twitch in the foot, thigh, arm, even face, etc. Sometimes it can be a strong jolt or shock to the face and I once had a quick zap to my jaw, it stiffly opened wide, then clamped down and closed. I don’t know what this is. It’s new and keeping me from going in to a deep sleep.The primary care doctor tested me for MS and that was negative. He thinks it’s restless leg syndrome, but I don’t have a strong urge to move. My sister has RLS and I’ve seen the uncontrollable shaking. I don’t have that. It’s an involuntary twitch while I’m sleeping.I posted on another forum and they mentioned it possibly being Periodic Limb Movement Disorder. Anyone else have this? If so, what are your symptoms and what kind of doctor deals with this?Thanks!Anyone else experience this?

Hi Gobabygo:

I thought I didn't have RLS either, because I don't twitch (exactly).

My RLS presents as pain. An aching pain that builds and builds and becomes unbearable. If I did twitch, I think that would bring relief... It's like I get the pre-twitch feeling and am stuck there--in pain--as the feeling builds relentlessly.

The definitive thing (in my case) was that it only occurs when I am sleeping or very drowsy (like lying down, watching TV in the early evening--close to falling asleep---or totally relaxed, riding in the car on a long trip).

I've since learned that RLS has a variety of presentations. My symptoms are in my thighs, not calves. Evidently, symptoms can appear on more than just lower legs--including (but not limited to) upper limbs and shoulders etc.

I've never heard of any "test for MS." Diagnosis, I've understood is from a process of elimination.
I copied this from a Mayo website: "There are no specific tests for MS. The diagnosis is given by a combination of medical history, physical exam, MRIs and spinal tap results. A diagnosis of multiple sclerosis also involves ruling out other conditions that might produce similar symptoms. This is known as a differential diagnosis." ... Something like an MRI would be looking for an alternative explanation--not an "MS finding."

RSL also is a differential diagnosis.

Most generalist-doctors treat RLS incorrectly, prescribing a drug like Requip--which works great initially, but eventually causes augmentation (a worsening of symptoms in terms of frequency and severity ---a worsening that doesn't improve). My RLS neurologist believes everyone on this kind of drug will eventually have augmentation.

So, you want to find a specialist, who understands RLS. Typically, this would be a neurologist. But, again, common treatment can be counter-productive because most run-of-the-mill neurologists also prescribe dopamine agonist drugs (that lead to augmentation).

I also learned that a number of other drugs can make RLS symptoms worse. I tried a prescription muscle relaxer, Benadryl, and melatonin to help with bad sleep that came along with RLS and found on nights I took these my symptoms were just terrible. I also learned allergy medications (OTC) can make symptoms worse.

Only a true RLS specialist knows these things. My primary doctor sure didn't.

There is a RLS Foundation website and a number of doctors are on their board of directors. These guys all know what they are doing. And, there are neurologists at Mayo and Stanford who are capable of treating RLS. ....It depends on where you live how you find a RLS doctor. I never needed to reach out to the RLS Foundation for a doctor recommendation, but I would trust a doctor they sent me to see.

You might have to travel to find a capable doctor and you might have to wait for an appointment. I did.

But, in my opinion, that would be better than running the risk of augmentation (getting a prescription from someone who doesn't understand RLS).

I would ask any doctor from whom I sought treatment if there is any risk of augmentation from the RLS drug he (or she) wants to prescribe.

Getting effective treatment is a process. Iron levels are checked because some kind of low iron in the brain was found causative (after researchers examined hundreds of post-mortem brains of people who suffered from RLS---research funded I understand by the RLS Foundation). Then, IV iron can be effective. (It wasn't for me).

First line drugs include gabapentin and pregabalin, which also didn't work for me.

I understand RLS does "run in families" so the fact you have a sister with RLS could be significant. Nonetheless, you haven't officially been diagnosed, yet, so that would be the first step. And, again, this is done by a review of symptoms and a process of elimination. RLS doesn't show up on brain scans or in blood work.

I went through a lot of hellish, sleepless nights before I was diagnosed. I thought my problem was muscular and I keep going back to physical therapy--for years. But, now--with the help and understanding of my RLS doctor---my RLS is very manageable. I'm not cured. There is no cure. But, I have sufficient sleep instead of insomnia. I take medication and I also (just two weeks ago) got a wearable device that helps counter symptoms. Not every night is perfect, but my quality of life is so much improved with adequate sleep.

I don't know if there is a difference --or a difference in practical terms--between Periodic Limb Movement Disorder (which just sounds descriptive to me instead of causative) or RLS (which also sounds descriptive and not causative). It helps me to think of my symptoms as brain-induced (like seizures). They aren't something I can control by what I do in the daytime (how I exercise or what I eat or how I pray---although God knows I have tried all these things). They are bad enough to warrant medical intervention. Good medical intervention (from a RLS specialist).

I hope this helps, Gobabygo!

In my 1st sleep test, years ago, I was diagnosed with APNEA & PLMS (it was Periodic Limb Movement while Sleeping). I experienced no 'tics". It showed up only on the Sleep Test. I've been taking a small dose of Clonazepam, before I go to bed, which later Sleep Tests showed works perfectly, by stopping the involuntary "jerks" in my arms & legs. At first I was told it was not related to RLS, but years later was told that it was. I tried MANY other drugs, but found that Clonazepam was the only effective one for me. Hope this helps.

@gobabygo, you might also be interested in this related discussion:
- Periodic Limb Movement Disorder: https://connect.mayoclinic.org/discussion/periodic-limb-movement-disorder/

Have you talked to your doctor about this possible diagnosis for you?

Hi
I’m a newbie.
I have PLMD after 2 sleep studies ten years apart both showed it.
I’m interested in how many people suffer it and do they know their PLMD score from their sleep study?
I’m going through trials to try and improve my sleep quality with a sleep specialist.
I sleep no problem but the quality is poor as my Deep sleep is not good and nothing yet seems to improve it. So with PLMD, I don’t feel sleepy during the day, rather lethargic and low in energy. I get heaps of light sleep but wake up feeling lousy every day no matter how long I sleep or where I sleep or what activity I’ve done during the day or what supplements I’ve tried or what of the many sleep hygiene techniques I’ve tried.
I suspect there are millions of people like me who don’t know what a good sleep is because PLMD is not detected until you have a proper sleep study (Polysomnogram).
I had hoped Mayo Clinic would be a guiding light on PLMD.

Hello Aussieian,

I too have suffered from PLMD for over 35 years. Do you live close to a Mayo Clinic? If you are able to schedule an appointment with a sleep specialist at Mayo, they would complete a nerve test, and other testing to determine if it is truly PLMD.
I was diagnosed with RLS back then, when I knew after reading and researching, I had PLMD. It was the Mayo Sleep Specialist who diagnosed me with PLMD after listening to me, truly listening to me. I am taking a very small dose of buprenorphine that curbed the leg jerks at night, and at naps (when taken)
I had two sleep studies, one in 2015 and the other in 2023: both were inconsistent with the results. As we age the PLMD becomes worse, and if needed, I will take another sleep study.
Good luck with your journey at this terrible disease.

I was diagnosed with PLMD over 20 years ago. Don't remember scores (3 separate sleep studies), but they were high. I tried about 17 different drugs , but none were effective, except Clonazepam. I take a small dose (2mg) just before bed, & it works fine. Docs are reluctant to prescribe as it is highly addictive & may cause organ damage. I get checked by doc's every year & have had no such problems. Don't mind being addicted, because I can sleep--worth it! Hope this helps, & saves you the pain of going through a lot of the unnecessary side effects I went through. Good Luck!!

Hi Vikkitennis,
Thanks for your quick reply.
I’m in Australia and currently seeing the Sleep clinic at the Flinders University here in South Australia. It’s slow going and a bit frustrating I’ll admit but I’m retired now and am steadily expanding my knowledge more on line and by getting different medical checks and seeing different specialists. I’ve known something wasn’t right about my sleep for a long time, but I had no obvious signs and no RLS. I just knew I shouldn’t feel so drained every day.
Also I never dream anymore like when I was younger ( when I would wake near a REM phase and recall the dream). My deep sleep is impacted and that’s what I’m hoping to improve once I start some meds under guidance of my sleep doctor. I’m yet to be impressed by either of the sleep doctors I’ve seen though.
Thanks again