Who else experiences involuntary movements when trying to fall asleep?
A few times per week, usually while lying in bed, my legs would suddenly kick/jerk or my hands would contract.
There seems to be so little data about this. So far, I've found one "sleep doctor and another paragraph on a website that validate my experience.
This is not unusual for RLS. Many people experience these movements, including myself.
If you'd like some help in dealing with this please let us know more details, e.g. have you been diagnosed with RLS?
Are you recieing any treatmemt and if so what?
Hi Manerva 😊
I've been struggling to sleep for all my life and was only diagnosed with RLS recently. Started taking melatonin pills (it's been 4 months now), which helps to regulate my sleep and make me feel sleepy. I still struggle to fall asleep but it's much better now!
Pramipexole was prescribed but I've been hesitant to start taking it, as I read that it can worsen symptoms over the long term. I first want to see if I can manage RLS with lifestyle changes. (I already don't consume caffeine or alcohol, and exercise moderately every day.)
Two years ago, I experienced a month of very intense involuntary movements, mostly of my hands but also legs and toso, at any time of the day (up to 40 times). Turns out I had both an iron and magnesium deficiency. (I also had an emotionally stressful time, which may have contributed??). The symptoms improved as I took iron and magnesium supplements but never totally disappeared. Now it's mostly during the night that my legs suddenly kick for a second or two.
Apologies forthe delay in replying. I thought I had replied, but now I see I haven't.
If you've been stuggling to sleep all your life, then currently your struggle to sleep may not be entirely due to RLS.
You may have chronic primary insomnia, in which case it's worthwhile exploring cognitive behavioural remedies. Melatonin works for some people, but it can make RLS worse.
See my post on sleep.
healthunlocked.com/rlsuk/po...
Iron deficiency is the main cause of RLS. I don't know what you were told at the time but there are different types of iron deficiency. Broadly speaking there is blood iron deficiency and brain iron deficiency, (BID). IF there is no blood deficiency, it doeasn't necessarily mean there is no BID.
Hence, if you were identified as having iron deficiency (blood) and that is now corrected, then you may still have BID.
To assess this you could ask for blood tests for a serum iron, transferrin saturation (TSAT) and ferritin.
If you have blood iron deficiency then all of these will probably be low e.g. TSAT <16%
IF they're all "normal" BUT ferritin is less than 75 then the recommendation is that you try to treat your RLS by taking an oral iron supplement.
There is more information available about this, if you read through posts on this site.
I hope you're not insulted but your RLS sounds mild, if your legs only kick for a second or two. THis does mean however that the iron therapy may deal with it on its own.
Anxiety is an aggravating factor in RLS and can make it worse, (and sleep). Stress management strategies will help.
Other aggravating factors could include any medications you're taking. There is a list on this site somewhere of the main ones.
I note you're avoiding the usual "triggers" e.g alcohol and caffeine. You need to add sugar to that list i.e. added sugar or anything with simple sugars in it, cakes, biscuits , sugary drinks etc.
Longer term aggravating factors include diet, inflammation and gut health. There is more detail on these in other posts on this site.
I think your sleepm,problems may just be that. Howerver if your RLS does become severe then it is poosible youmay need medications.
The first line medications recommended for RLS are called alpha 2 delta ligands, pregabalin or gabapentin. Dopamine agonists (pramipexole, ropinirole or rotigotine) should only be used if the first line treatments fail. This is because of the high risk of augmentation with the agonists, especially pramipexole.
I hope this helps.
Thanx so much for your detailrd reply!!
1. Interesting that sugar worsens RLS symptoms! Do you have a link to an article about this?
2. Yeah, I don't understand why I got a prescription for pramipexole instead of the first line treatment.
I can confirm, I experience this every single time I attempt to rest or sleep. Mostly at night.
I have been dealing with RLS for years. There is so much misinformation on the internet, from soap under the sheets to weighted blankets. Not here, ask away. I will be here to read all the answers.
You're very kind!I'm looking for research or articles about RLS and involuntary movements while awake. So far the resources have been so scarce.
Search for RLS and PLMD (Periodic Limb Movement Disorder)
The statistic I read was 80% of RLS sufferers have some form of PLMD. Mayo Clinic has some good article IIRC.
But if I understand correctly, PLMD is something that occurs only while sleeping... not while being awake?
A lot of us experience quick jerks or contractions while awake. I think it is called PLMA for Periodic Limp Movement while Awake. I get jerks during the day, small ones that most people don't notice. Essentially anytime I try to rest. At night, once the lights go out and I get to bed, everything starts.
I try to deep breath and calm myself, because it feels like a full on panic attack on bad nights. I am getting pretty good at it, but I do have my bad nights still. Lately that means I sleep on the floor next to the bed until my RLS turns off. I really feel bad for my wife.
Once I am asleep, I am OK, it's getting to sleep (and staying asleep) that is the issue.
I also have involuntary movements essentially every time I try to rest or sleep if I haven’t taken my medication. Fortunately, for now, a very small amount of medication an hour or so before bed is enough to prevent symptoms. I take 100 mg gabapentin and .5 mg of indica marijuana each night, but definitely still have the symptoms (to include involuntary kicking, twitching, or shaking) if I try to take an unmedicated nap. I can be asleep, falling asleep, or just in a sleepy state and it will happen.
This is my main problem, twitching legs as I try to fall asleep. I've been diagnosed with periodic limb movement disorder (PLMD) and RLS. I have just few of the more classic RLS symptoms (e.g. desire to move legs, creepy crawly feelings). Sometimes the twitching extends to my stomach and arms and feel more like hypnic jerks. PLMD is split into 2 categories: PLMS and PLMA where S is sleep and A is awake. I have both forms although the PLMA is more rare. These symptoms are largely controlled by 1200-1800 mg of gabapentin, 600 mg at 8:00 pm, 600 mg at 10:00 PM and more later if needed. I also have 0.5 mg tablets of ropinerol for when the symptoms are really bad. I only take this as needed so as to avoid augmentation.
WHAT? 😅 First time I'm hearing of PLMA... that already helps a lot! Gives me a term to search for 😊
Please report back with what you find. We are all searching.
I get those too, just an extension of the RLS I think...... or a build up of the discomfort in that limb which is then expressed. I have hurt myself doing that on occasion. I try to make sure nobody is within reach! That includes the furniture lol! Ouch!
I’ve had a sensation of falling or tripping over and jerked awake when dropping off. I think that’s quite a common thing among everyone.
There are times when I’ve been woken up by RLS and you can jerk before fully awake as you’re not awake enough to choose whether to move or not and the build up of sensation makes you jerk. I’ve found half asleep with my neck flailing around from side to side, and that’s how I realised my RLS had spread to my neck.
It’s more likely when trying to fall asleep or being half asleep that my legs will suddenly jerk as I’m not fully in control of my reaction to the RLS sensations.
I don’t suffer from PLMD as far as I’m aware as I don’t do any of this when fully asleep, leastways no-one’s ever told me I do.
That is my disease precisely. I used to have typical RLS symptoms, but in my hands.
After being treated with ropinerole and pramipexole for RLS, I developed sudden involuntary jerking or twitching movements in my limbs--upper or lower--or sometimes my torso, whenever I try to sleep, or even relax deeply, night or day, unless I am medicated.
It is hell to not even be able to relax, let alone sleep, without the twitching bringing me to full alertness.
Thunderstormy, I think there are a lot of people with these involuntary movements, and we are treated the same way as RLS, but I don't think there is much known about the nature of this type of RLS or whether the treatment should be different.
I hope your symptoms remain occasional and mild and I wish you good sleep or rest whenever and however you can get it. Whatever you do, don't let anyone prescribe dopamine agonists for you.
Paul
How to distinguish RLS and Periodiic Limb Movements?Most effective medications for suppressing Periodic Limb Movements of Sleep (PLMS)
Restless Leg Syndrome with Periodic Limb Movements in Sleep
This may sound mad, when my leg movements get to me I get up and lay on the floor with my legs up the wall put earphones on with loud music 
RLS for 30yrs
