I have had PLM or RLS for 3 decades. This year it has gotten significantly worse.
I get in bed, and lie there anywhere from a moment or an hour playing solitaire on my phone; once I am ready to sleep, I set my phone to do-not-disturb mode and close my eyes.
Within minutes of putting the phone down, my legs start kicking. Not just the "urge to move", rather, both legs kicking 1-2 feet off the mattress. Sometimes my left arm will jerk across my chest.
What seems odd is the timing. There is NO correlation to how active I was during the day, nor what time I lie down to sleep. It simply happens every night.
I have mentioned this to multiple practioners and most just grunt "huh". One dismissed it with "it's neurological" but wouldn't elaborate.
I have never seen this specific behavior described anywhere, but it seems like it would be extremely relevant. Thoughts?
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MaxPolokov
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They could be right about the Neurological issue. I have the exact same problems. Currently waiting for a referral appointment coming through.vHowever it's a long queue nearly 16 months already. Good Neurologists are few and far between. It's caused by the nerves receiving the wrong signal from the brain for the arm thing known as a spasm.
It’s common for RLS to kick in as your activity level reduces or you go to sleep. I rarely have any symptoms in the evening, and never have any problem falling asleep, but quite often the RLS will kick in straight after I go to sleep and I will wake up twitching anywhere from 30 minutes to two hours later. I believe it is related to your dopamine levels which drop when you go to sleep or when you are at rest without any stimulation.
I have had RLS for years and although on meds for it something sparks it off some evenings/nights. As others have said, stretching, marching on the spot, cycling in the air while lying in your back sometimes helps. Sounds crazy!! However, the one thing that definitely works if you just can’t get relief in the bed is to spray your legs from your thighs down with very cold water from the shower, using hand held shower hose. I sometimes spray my arms too as I get the jittery feeling all over. Torture I know, but only for a few minutes! Then more often than not I can finally get to sleep. Might help?!!!
You have described precisely my symptoms!!At the moment I take 2 maybe 3 x 50mg Tramadol capsules around 8 to 9pm and mostly it gives me relief (but not last night!!!!!)
I have the same problem: periodic limb movement disorder. To say it sucks is a gross understatement. I think I've had PLM for many years and just slept with it. When I was about 64 it started to kick in as I tried to fall asleep which of course keeps me awake. In other words it gets worse with age. None of the usual triggers make any difference for me (alcohol, sugar, caffeine, nicotine). I do find that exercise helps and the more the better. PLM is treated the same way as RLS. See the mayo clinic paper and algorithm. I'm on 350 mg of pregabalin 2 hrs before bedtime and its not very effective. I had an iron infusion that raised my ferritin to over 300 but this offered little help. Sigh.
Have you tried adding in a small dose of clonazepam (klonopin). I take 0.25mg in addition to 300mg and it usually works provided i get to sleep on time.
I have both and some nights the kickings worse and some nights the constant movement of the RLS is worse. It sounds like you need to get a better doctor to help you with this. 😞meds are the only thing that keeps me going.
For those who suggested tramadol and klonopin: practioners assume I'm a drug dealer when those kinds of medications are brought up. I have begged for the last six months to get enough klonopin to treat my anxiety and finally got a comfortable amount. For me, tramadol doesn't do much for pain in general.
I did have a new neurologist appointment scheduled for August, appointment made in October of LAST YEAR, and just yesterday they called to say the doctor had better things to do that week so I need to reschedule.
There is no pain when the kicking starts. Just that "urge" sensation seconds before the kick.
I am a light sleeper and have used Lunesta since before it was available as a generic, partly to mitigate my 10-a-month migraines. I suspect I would not sleep at all without it. And of course one of my recent providers said, gosh, you can't be on that long term.
I did start pramipexole last summer, stopped using it early this year when my kicking got significantly worse (presuming it was augmentation). I then got on 300mg of gabapentin, and upon review had that upped to 600mg. I think that is helping, at least it makes me less aware that the kicking is happening, but I still wake up exhausted, presumably from all the kicking. A pulmonologist put me on ropinirole, lying that it was TOTALLY DIFFERENT than pramipexole. I tried it three nights and was a zombie during the day, needing to take a 90+ minute "nap". Back on the gabapentin for now.
600 mg of gabapentin is a very low dose so it is no wonder it is not working. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. If you take magnesium, take it at least 3 hours before or after gabapentin (it is OK with pregabalin) as it interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people.
Since you live in the US it is easy to change doctors to one who could see you much much sooner. That is ridiculous to have to wait that long. Where do you live? I might be able to provide the name of a doctor near you is is knowledgeable about RLS and PLMS which is treated the same way. Also there might be a health clinic near you that could do the test. If needed your doctor could phone it in to the clinic.
The long wait is for a first new patient appointment with an out-of-network provider that has been significantly more receptive to my wife's needs than our in-network PCP who is more concerned about wearing a mask to fend off the dreaded coronavirus than actually thinking outside the box.
Nonetheless I will ask that PCP to prescribe the bloodwork (per Mayo, it's "early morning, fasting iron panel: serum ferritin, iron, total iron-binding capacity, and percentage transferrin saturation", right?
And the gabapentin was prescribed by my mental health provider who just took me from 300mg to 600mg. Now that I've seen the Mayo info, I'll see about getting that increased.
Have you had your ferritin checked? Ifso, what was it? 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 multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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.
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.
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