Interesting - last night at 3am I was woken up by my legs jumping. This is not unusual. Sometimes I wake before they start, I haven’t really paid attention to this detail.
Anyway hubby is a real deep sleeper but last night he was awake before me and said I was fast asleep but my legs were jumping. This went on for about 20 mins until they woke me up.
So this explains why my legs are aching during the day sometimes despite me not having been up and down much in the night (or so I thought!)
Is PLMD classed as a separate issue to RLS or just a joyous (!) add on? 😊
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Islay9
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Many people have both and as Madlegs1 said they are treated the same. I don't think you need a sleep study. At least not to diagnose PLMD. That's mainly to see if you have sleep apnea.
That's not correct Sue. PLMD is diagnosed via a sleep study. The data a sleep study produces is extremely helpful to understanding the severity of the individual's condition. Everyone has limb movements while asleep, and many people have periodic limb movements. When these limb movements exceed a certain threshold, and when daytime functioning is impacted, it is classified as a disorder. Sleep studies show the number of limb movements as well as the number of micro-arousals as well as a whole host of other useful data such as heart rate, sleep stages, time asleep etc.
It can provide some useful information but it is pretty clear she has PLMD if her legs were jumping for 20 minutes. And the treatment is the same as for RLS.
I don’t mean to be argumentative or doubtful but I’m curious—does a sleep study matter? I agree the results would be interesting, but for me, not worth it. My general practitioner and neurologist were both independently pushing really hard for me to have one. Originally, when my symptoms were out of control, I couldn’t imagine putting myself in an even more uncomfortable situation for the night. After I was finally doing better (thanks mostly to this forum) and things were somewhat under control, they still kept trying. I finally asked my neurologist if the study would inform my treatment in any way (like, if our approach to help me might change depending on what was seen) and he said “no” that we were already doing everything possible to treat it. So, um, no thanks on the overnight polysomnogram.
I often have to review people’s sleep studies for my job and there are all kinds of incidental movement disorders noted but unless the diagnosis is sleep apnea, very little is done for these people based on the findings. But if others have had a different experience or have a different opinion on the importance, I’d love to hear about it because if there is an actual reason to do it, I’m all in.
My point (in response to Sue's reply) was that Periodic Limb Movement Disorder can only be diagnosed via a sleep study. A bed partner or one's own self observing limb movements doesn't equate to a diagnosis.
The answer to your question of whether a sleep study matters or not is more subjective. Personally, i have found sleep studies to be incredibly useful. Firstly, to identify the reason for my non-restorative sleep, secondly to identify the severity of my condition, and thirdly to provide a benchmark against which to measure the effects of different medications.
I have done approx 4 sleep studies, including a daytime study. They're not a pleasant experience by a long shot. However I refer to the results of these studies from time to time and even when i saw my sleep specialist recently, he suggested another sleep study to see the effects of dipyridamole -which i have recently reintroduced - on my sleep. (He doesn't get any kickbacks for referring me).
When my young son's PLMD was being investigated, he had a sleep study among other tests, the point of the combined testing was to rule out other movement disorders such as epilepsy.
I also find comparing the difference in number of limb movements, micro-arousals, heart rate, sleep latency etc between different medications and between medicated/non-medicated to be really interesting. For example, in respect to my third sleep study, i had been taking pramipexole which had worked very well for some time (and had up until then given me restorative sleep). I was having this third sleep study because i had begun to feel daytime fatigue once again. Interestingly the sleep study showed that there were negligible limb movements on pramipexole. I've puzzled this for years and only in recent correspondence/conversation with Dr Andy Berkowski and my sleep specialist have i better understood that it is the micro-arousals and not the limb movements that are the real problem in respect to periodic limb movement disorder. Ascertaining micro-arousals (only achievable via polysomnography) is therefore arguably a better measure of sleep disruption, than limb movements.
I have PLMD as a solo condition. I've had it S such for some 12/13 years. It presents via a nocturnal awakening either just before or at the moment the flexions begin. They may affect just the one leg or both simultaneously and they will only pass after between around 10 to 30 minutes exercise - a combination of walking up and down and leaning on a chest-high surface and walking energetically on the spot. The only medical intervention that has worked 100 % - i.e. as in simply stopping the flexions completely - has been, and still is, Buprenorphine in sublingual tablet form, in my case at 0.8 mg. To date, I have had no PLMD flexions since July 2023. If you're in the UK you may experience considerable difficulty persuading your GP - indeed, your surgery - to prescribe it. It's off licence for RLS/PLMD. Whilst there exists abundant substantive evidence within well-sourced American research and practice, NICE barely recognises RLS/PLMD as a condition causing extreme distress to millions. My surgery has recognised the authority of my excellent sleep clinic supervisor at the Royal Papworth Hospital in Cambridge, who has given them the thumbs up via the American data. All the best to you in seeking treatment for your PLMD. All the help you'll need in your initial research can be found here, either directly from extremely knowledgeable patient-experts or via a query search.
I too have PLMD it is as severe as my restless legs. My movement can be small or hugely exaggerated. They can often me timed 20 seconds apart etc.
I have in it in my legs, arms, trunk and head. I’ve just had a sleep study in a room with a camera whilst bein go wired up. Like amrob123 says they look at your heart rate, breathing pressure and oxygen along with the film and correlate where you were doing what. I spent most of mine walking around the ward!
I’m having the joyous job of trying to get get the appropriate treatment after getting off pramipexole! 😊
I have extreme PLMD one feature of which is a pain spectrum. Sensations range from electric shock to stingers to donkey bites, burn twisters, needle jabs and more. Do others have this I wonder. It’s partially controlled by Buphrenorphine (500 mcg and counting). Illegal cannabis helps hugely too. Oddly the attacks became much worse when my GP upped and axed my vit b 12 injections. However a blood test later revealed normal vb12 … you can’t win, can you? Yes, Islay9, I too often think I survived the night intact only to find myself groggy and unenthusiastic at breakfast.
Oh , sorry, what I really meant to say was that I’ve been hugely helped by icy showers and dunks. Sometimes three a night.
Welcome to the forum. You will find lots of help, support and understanding here.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, , dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
If this is a rare event, my question would be what was could have triggered it? The most likely is something that you don't regularly eat, most likely processed food containing artificial preservatives like potassium sorbate (E202) which is likely to be in things like coleslaw, dips, sauces, coleslaw, some fruit juices and wines.
No PLMD is also a part of RLS, I suffer from severe PLMD And it is that bad. Sometimes I can go three four nights without sleep because it is that bad and also have so many bruises on my legs because of it. It is unbelievable, mine is that bad. I am in a living nightmare with it and there's nothing I can do about it and if anyone else suffers with it. You have my deepest sorrow. Sometimes I get to the stage where I feel I would like to cut my legs off to alleviate what I am going through.
I have PLMD as well. I was diagnosed at my 1st of 3 sleep studies, along with the RLS. The basically told me at the time that they were essentially the same with the biggest difference being that RLS happened when you were awake. PLMD happened when you were sleeping. I would agree that it appears that the successful treatment of the one, seems to successfully treat the other, at least for me. Yes, I was diagnosed with sleep apnea during the 3rd sleep study but I don't know how to treat it as the BiPap machine gave me horrid panic attacks. I couldn't breathe and would rip it off in my sleep or I'd wake up gasping for air. Have they made any advances in dealing with/improving treatment?
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