Most RLS websites and health sites state that 80% of RLS patients also have Periodic Limb Movement (PML) during sleep.I've never been asked about PLM and I'll bet most others haven't either.
As we know there's hardly any research carried out for RLS, it seems that the 80% figure has been plucked out of the air.
To test the statement, let's see how many of us have RLS AND PML. You will need to ask your sleep partner, as most people are unaware their limbs are moving at night.
Simply answer Yes or No below.
Do you have PML as well as RLS?
Written by
Joolsg
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I have PLMA (PLM while Awake). I have talked to my wife many times and once I am asleep there is generally no movement except maybe restlessness.
So I would say yes, I do have PLMD but it while I am awake and trying to rest.
I take Dipyridamole (still). When I first started taking dipyridamole, it stopped my PLMD almost 100%. It still does an excellent job, the movements that sneak through are not as strong or intense.
Dipyridamole still takes away the RLS (urge to move). There are little to no side effects after the initial month of headaches.
Yes. Well, I had when my RLS wasn't controlled well by the treatment I was taking at that time. Since buprenorphine, I no longer experience RLS at night and haven't heard my partner mentioning movement of my legs during my sleep. So I think I have or had PLM, but it is controlled by my current treatment.
Interesting issue. I think there were one or maybe a few studies, but we all know most RLS studies do not last long, or when based on sleep assessments, a sleep study usually lasts one night only.
I too have PLM. However, LotteM, I want to ask about your use of Buprenorphine. What are you using( buccal patch, sublingual med, etc) ? I use the Belbuca (Buprenorphine without other meds) buccal patch twice a day. The dose is 150mcg twice a day. It has calmed my RLS somewhat. According to Dr. B, I have one of the worst cases of RLS he has seen. I often have to use 2 patches at night.
Hi dancer2, I am in The Netherlands (Europe) and we can't get Belbuca buccal patches. We have, apart from various tablets, only skin patches of buprenorphine available. Mine is 5mcg/h and lasts 7 days. That is the lowest dose. Be aware that doses of buccal patches and skin patches cannot be compared directly, as the uptake route and thus uptake efficiency is different. Glad the buprenorphine works for you too!
Thanks for your quick reply. I do know that you cannot compare the different delivery methods of Buprenorphine. My concern is that the Belbuca has worked very well for a couple of years. However, not as well recently. I am fearing that the dosage will have to be increased. I have tried every other treatment and have no other alternative. It just scares me to have to increase the dosage.
I was not aware if I had PLMD until I used my survillance camera to capture my nightly sleep. I had this uncontrolled movement of my leg at every 40 seconds and lasted for 1-2 hours.
It would seem so, yes. They did a sleep test but some data was left out and they also interpreted it all wrong so all I got was that there was a lot of restlessness, but no clear indication as to when it occurred. I did seem to have been asleep during most of it and it seems to be the reason I was waking up briefly.
Yes. Since I have gotten off the DA’s, I have experienced both the normal RLS restlessness and also contractions where my legs and/or stomach seize, sometimes in response to taking suboxone, sometimes due to having no meds in my system. I am either awake or I wake up from the contractions. It's odd and overall worse than when I was on the DA's. I seem to have one or the other-never both types at the same time.
yes I have both RLS and PLMD. The PLMD was picked up during both of the sleep studies I had and my husband complaining that I don’t stop moving all night. That together with my snoring means we now have separate bedrooms as at least he can get some sleep since he was given his CPAP machine.
yes. It often wakes me up or prevents me from getting a deep sleep. I wake up feeling like I’ve slept all night but become incredibly tired towards the end of the day.
I have PD and a few years in, I have NPML that was diagnosed with a polysomnography. Strangely, I wasn't aware it's there, the study night, I woke up in the morning thinking that it had been a normal healthy night, but I actually had 75 episode and 11 awakenings per hour on average. It git a devastating wimpact on my Parkinson’s. I got treated with levodopa at night, pgb, zopiclone and melatonin. It took me 2 years to recover. In March, "something started again, under treatment. It emerged to be RLS, again, in June my Parkinson’s deteriorated. Eventually I got iv iron, and things got better though not enough. Eventually exercising plus vit B3 got me to what I think is a full stop. I would like to recommend people and friends here to consider exercising as Parton the treatment. If I don't exercise for 3 days, RLS is back. Happy new year
My neurologist has diagnosed me with severe dystonia, a symptom of PD. At first thought it was PLM related to augmentation from being on ropinirole for 15 years. They took me off cold turkey in the hospital, well moved me to psychiatric hospital. Was there almost a month. Was insane and I don't recommend it to anybody, but thats a whole different story, which I will share one day. But the point is, my symptoms were worse being on no madication but we were able to establish a new base line. My symptoms were worse. What they thought was PLM due to augmentation was really dystonia related to Parkinsons disease.
I'm sorry to hear that you went through such a terrible time. Cold turkey off Ropinirole is horrendous. You should definitely share your story on here as a separate post.
thank you. I definetely will. I tried to start writing it a couple times, but realize I'm not ready to revisit that. You see, the symptoms have returned. I'm still having auditory hallucination issues. I am weening off from 4mg with 1200 gabapentin. at 3.25 now. Things are more quiet and managable but if I try I can tune in and still here screaming and taunting. It sucks, but I am taking care of my mother who has ALS I am the only one who can lift her and pick her up so that's my role. She is on home hospice now and everyday is a gift with her. Sorry for ranting, so much happening. thankful for eveyone here, helps so much.
I have both. The PLM showed up on my sleep study. That explains why I sometimes wake up every hour at night. Just wondering - do some of you wear out out your bed sheets fairly often due to it?
Especially when I’m almost asleep. Often keeps me from going to sleep. Not sure about while I’m asleep. My husband sleeps like a log so he wouldn’t know. I got a heavy heating blanket for Christmas. Last 3 night have slept much better even though during the night I partially remove it. I set it up on high before I get in bed. When I get in I turn down to low. It goes off in 2 hours. I also have bad arthritis so it may be helping that from bothering me too.
I think I must have PLM, RLS forces me to get up frequently during the night, I am continually tossing and turning and the bed often looks like a disaster zone in the morning. I have resisted medication because of some of the stories I have seen on this forum.
You are right to resist dopamine agonists like ropinirole and pramipexole, but there is no harm and quite a lot of benefit in trying gabapentin or pregabalin. If you don't like them, you can come off them by slowly reducing them and you will have no withdrawal effects. Nothing ventured, nothing gained. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects of gabapentin and pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you take magnesium don't take it within 3 hours of taking gabapentin or pregabalin as it will interfere with the absorption of them. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate 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, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
Thank you so much for your very helpful advice Sue, I have only tried an Iron Supplement, although my levels seemed to be OK, (Ferritin 115) and I do not take any other supplements or medication. I will definitely take your advice on board and consult my Doctor again.
Yes. PSG showed 82/hr with 22/hr resulting in arousal. They are in spurts of about 30-90 minutes. They seem to have been reduced substantially by avoiding coffee (caff or decaf). I still drink caffeinated tea in the morning.
Yes, and as others have shared, I have that during the day, in the evenings, particularly if trying to sit or lie down still whilst for example watching a movie.
I don't know if I get that during the night but I assume I do as I usually find my bed sheets all over the place!
It was actually the twitching and jerking that made me realise something was wrong (as others have shared as well).
I've also noticed that pregabalin is helping with that. Yesterday evening my legs started to twitch and jerk and so I immediately took 75mg pregabalin as prescribed by my GP. I would have normally waited a bit longer as I take it one hour before going to bed, but after taking it, legs calmed down. I don't think it's just my imagination as it's not something I can really control, if they twitch and jerk, they twitch and jerk! I think I read a post from someone else talking about splitting doses that mentioned a similar effect. If this is going to work well for me (fingers crossed) it'll be life changing.
75mg is the starting dose for RLS so you have room to increase. Discuss with your GP. You could then take a split dose to cover early evening symptoms and night time as well. The average dose for RLS is 150-200mg. If you took 50mg early evening and 50-75mg an hour before bed it would probably give you more cover.
You would get more replies if you made a seaparate post. Only I will be notified of replies to this post.Everyone is different. I used to use ferrous bisglycinate every other night as it's easily absorbed, doesn't cause constipation and you don't need to take it with Vit C.
Most people take between 25-50mg every other night so you would need to take 4x14mg at night. They do sell them in higher doses so you would only need to take 1.Have you had full panel, fasting blood tests to show your serum iron, serum ferritin, transferrin and percentage iron saturation?
Sadly, GPs can ignore this advice which is why NICE needs to set out a full set of guidelines and the NHS should ensure they're followed.
Just read your previous posts and replies and you said serum ferritin for your husband was 113. So there's room for improvement so the ferrous bisglycinate will help.
However, you never listed ALL the meds your husband is currently taking including the dose and time.
The doctors caused his RLS by over prescription of levodopa and then Ropinirole/Pramipexole.
If he's on anti depressants, antihistamines, statins, beta blockers and Proton.Pump gastric meds- they can all worsen RLS. That's why we ask for lists of meds.
The gabapentin average dose to control RLS is 1800-2400mg. It's best taken in 600mg doses 2 hrs apart at night.
Thank you so much for all your help and advice. He is on 1600mg of gabapentin spread over 3 times a day, 300, 200, 1100. Recommended by his very understanding Neurologist. He seems to be starting to get a little bit if sleep now but nowhere near normal. Will try the Iron as well. Only other meds are 5mg Bisoprolol every morning.
There's no point taking 1100mg gabapentin in one dose as anything above 600mg is poorly absorbed.If you play around with the timing, your husband may get better sleep.
As RLS mainly hits in late afternoon, evening and night, you could try taking 400mg at 7pm, 600mg at 9pm, 600mg at 11pm.
The average dose for RLS is 1800-2400mg so there is still room to increase. Alternatively, pregabalin is a similar drug but you can take it all at once as it's better absorbed.
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Sleep studies and RLS
RLS = Sleep Deprivation
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