PLMA (periodic leg movement while awake)

[tcpace]

SInce a fall last year in which she damaged 3 lumbar vertebrae, mainly at night my wife has been plagued with PLMA resulting in sleeplessness and consequent fatigue during the daytime. If anyone has any useful tips for alleviating this problem, it would be much appreciated. TC

[SueJohnson]

Has her damaged lumbar vertebrae healed and has it been a couple months since then? That can cause inflammation which can cause PLMA. If they have healed and it has been a couple months since then, then:

PLMA is treated the same as Restless Legs. So when I refer to RLS, substitute PLMA.

Has she had her ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. When she sees her doctor, she should ask for a full iron panel. She should stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. She should have her test in the morning before 9 am if possible. When she gets the results, she should ask for her ferritin and transferrin saturation (TSAT) numbers. She wants her ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and her transferrin saturation to be between 20% and 45%. If her ferritin is less than 100 or her transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Above all she shouldn't let her doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex) unless there is some special reason s/he feels she needs it.. They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.

Instead she should ask him/her to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). [If she is over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks to be fully effective. After that she should increase it by 100 mg (25 mg pregabalin)every couple of days until she finds the dose that works for her.

She should take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If she needs more than 600 mg, she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. (She doesn't need to divide the doses on pregabalin)

Most of the side effects 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)."

If she takes magnesium she shouldn't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and she shouldn't take calcium within 2 hours for the same reason (not sure about pregabalin). Have her check out the Mayo Clinic Updated Algorithm on RLS which will tell her everything she wants to know including about its treatment and refer her 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...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, fennel, 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

[tcpace in reply to SueJohnson]

Many thanks for your detailed response. FYI, the spinal injury was in June 2023 and seems to have healed. Unfortunately she had another fall in March this year, resulting in a broken hip and broken bones in the arm and foot. She's now recovering from the hip repair operation and is beginning to get some of her mobility back. We'll work through your very welcome and detailed comments, starting with the ferritin and transferrin saturation.

[SueJohnson in reply to tcpace]

That's terrible. She has had a hard time of it!

Yes I would hold off the medicine as once her inflammation goes down she may not need it.

[amrob123]

I have PLMD and find that it's not always necessary to reduce the limb movement, but rather to get a good night's sleep. I have taken clonazepam on and off over the years and it helps me with sleep. However, medications bring problems of their own so it's important to keep the dose as low as you can manage.

If your wife is having restless sleep at night, is it possible for her to sleep late in the morning? AGain, i have found that if i can sleep for an hour or so after an initial waking (around 6 or 7am) then this is usually enough to get me through the day. I also find that limb movements start up early morning but tend to settle when i go back to sleep.

[Eryl]

In my experience PLMD can be caused by artificial food preservatives like sorbates an sulphites used in all margarines, and some dip, sauces, fruit juices and wines.