Hello! I am writing here hoping other people have experienced symptoms similar to mine and can help me better understand this problem that I'm struggling with right now.
It all started about two months ago with sleep problems, it was difficult for me to fall asleep and then I noticed that right before falling asleep my body was having these jerking movements. It lasted for about a week and then they disappeared and my sleep somehow improved.
After that, I've started to notice involuntary muscle contractions during the day, while awake, only when I am resting/sitting in bed (for example when I sit and read something or just laying in bed and watch something) - contractions of the muscles like jerks or startle, especially of my feet but sometimes of my arms as well. Moving my legs or being involved in some physical activity makes them disappear or occur with a lower frequency. I haven't noticed these movements when I am walking or when I exercise, they only appear while resting and I don't have them anymore before falling asleep. I also realized these jerks and twitches are not present when I am having hot baths and sometimes if I am distracted while lying down, I don't have them as much.
I've started to take magnesium for about a month now but no improvement.
I did some research and it seems like I'm experiencing PMLD in wakefulness, which may not be that common since these movements appear mostly when sleeping. Has anyone else experienced these? It makes me so anxious and is stressing me out, it's so annoying and uncomfortable.
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Cristian206
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As you'll read in the linked piece "The treatment of PLMD needs an accurate diagnosis and explanation of the problem. Medications used are similar to RLS".
So assuming that your doctor/neurologist has ruled out other possibilities, follow Sue's guidance: while magnesium does help some of us it doesn't help others, and resolving your iron/ferritin levels is the first step.
And PS: as Sue writes at the end of her reply, it would be good if you could complete your Profile - getting the right help is more difficult in some countries.
Welcome to the forum. You will find lots of help, support and understanding here.
Have you been diagnosed by this by your doctor? Has he considered and ruled out anything else that it might be?
PLMD known as PLMA as Chris pointed out is treated the same way as RLS. So substitute PLMA for RLS in what follows.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS. 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, don't eat a heavy meat meal the night before and fast after midnight. 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 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 you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation. Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.)
Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 as the peak plasma level is 2 hours. 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 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 you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin). 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...
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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Hello! Thank you for your prompt reply! Regarding my iron-related blood levels (including transferrin, ferritin, and TSAT), I checked them last year and they were within normal values but back then I was not experiencing these involuntary muscle contractions.
I haven't talked to my doctor yet about this problem as I studied medicine and I have some knowledge about this condition. As I was researching my symptoms, I learned about PLMD, although not have many details I could find about having these manifestations during the daytime. I wanted to know if other people experienced the same symptoms and got finally diagnosed with it.
Given that your symptoms came on suddenly, have you started any new medications or changed your diet or lifestyle (eg exercise) in any appreciable way?
Many people experience limb movements. These limb movements typically occur at night and when asleep.
When these movements go beyond a certain threshold, and impair daytime function, the phenomenon is termed Periodic Limb Movement Disorder (PLMD). People who have PLMD may experience periodic limb movements of sleep (PLMS) or periodic limb movements of wake (PLMW). PLMW is alternatively known as periodic limb movements when awake (PLMA).
Most people who have PLMD only experience PLMS, however a subset also experience PLMA.
To diagnose PLMD, a sleep study is usually required.
The most important question is, do you feel that your sleep is restorative?
While what you report sounds like periodic limb movements, there may be alternative explanations. If they're causing you stress and anxiety, it sounds like it's worth having it checked out by your doctor.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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