Since around March (when anxiety has been high, go figure haha) I am having bouts of leg jerks/spasms as I am dozing off to sleep. Getting to the doze stage is no problem, but once there my leg muscles suddenly contract which wakes me up. Sometimes this is accompanied by an itchy or prickly feeling in my thigh area as well. This goes on for an hour or two most nights.
The doctor diagnosed it as RLS, but everything I’ve read describes more of an urge to move (vs involuntary movement) and recurring movements during sleep which I don’t have. Just wondering if anyone else has experienced or heard of anything similar. Thanks.
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JFishing2
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Thank you Kaarina! That is very helpful. It discusses in a lot more relatable terms than anything I’ve seen before.
Hi, sorry to hear you're having this problem.
Kaarina has given you a link to the RLS diagnostic criteria and by comparing your symptoms to the criteria can indicate whether you have RLS or not.
However, not everyone has the same experience of RLS nor does everyone describe their symptoms in the same way.
Looking at your leg jerks. - There is quite a common experience known as "hypnic" jerk and almost everybody experiences this time to time. This is usually a "one off" (it just happens once) jerk and can involve the whole body and it feels like you've fallen off something.
It doesn't usually recur and it only happens on the point of falling asleep.
Although the RLS criteria don't mention this, for some people the "urge to move" actually becomes a real involuntary movement. Some RLS sufferers describe this as "twitching". At times in my RLS history I have experienced this more than any "urge to move". More often than not when trying to fall asleep, but also at other times.
In addition, 80% of folks with RLS also suffer from a condition known as PLMD (Periodic Limb Movement Disorder). Conversely, there are very few people that have PLMD that don't have RLS.
There are two forms of PLMD. PLM when Awake and PLM when Sleeping. PLMS is the most common form, PLMA is rare. With PLMS legs start jerking when you are asleep. this is a repetitive movement and can occur up to every 20-40 seconds. Most people that have PLMS aren't aware that they have this condition until somebody else (who's being kicked!) tells them. It can also be observed by undergoing polysomnography testing in a sleep clinic. This also detects sleep apnoea which is also associated with RLS/PLMD.
The movements can be fairly violent and some people injure themselves.
In practice, there is considerable overlap between the causes of RLS and the causes of PLMD. The treatments for these two conditions are more or less the same.
Hence
It is possible that you do have RLS, in which case you probably have PLMD as well. Most doctors don't seem to dwell on any differences between the two.
If it's agreed that you have RLS, PLMD or both then the next step is to consider what treatments can be effective for it.
Hopefully, your doctor has not yet prescribed anything and/or you've not taken anything as yet.
If and when the diagnosis is agreed it would be good for you to discover all the possible treatment options and find out their relative benefits and risks before making any decisions, especially about taking prescribed medication.
Thank you for the in depth reply! Your description of the urge to move becoming involuntary is a perfect description....almost as if once I begin to sleep it becomes out of my control. This is very useful and much appreciated.
I have the same thing happen but can get an itch, prickle or sharp twinge anywhere on my body and it starts spasms. It's periodic limb movement disorder which apparently you must have rls to also have plmd. Not everyone has both and when you read up on it, you'll find most people are asleep when it happens and are less likely to realise. Like you I have it when dropping off to sleep and it can go on for hours leaving my very sleep deprived.
I’m sorry that you go through the same, it’s such a frustrating thing! That’s what I thought from reading too about PLMD, that it occurred during deeper sleep. Thank you for sharing your experience, it’s helpful to understand it.
PLMS occurs when you're asleep, although it tends to disturb deep sleep. thus reducing the quality of sleep. If you do have PLMS, you also seem to have RLS. As I wrote before. it doesn't really make a deal of difference when it comes to treating it.
I have the leg jerks when I am awake too. I can get them in the evening when I am relaxing and watching TV and also as I start to doze in bed at night, before I am asleep. They have got worse over the years and can be quite violent with my legs flying around. I can also get it in one arm and occasionally my head will join in and turn to one side. My legs feel quite painful too when this is going on. Getting up and walking around helps and mental distraction like reading or doing a Sudoku.
Thanks for the reply!! I have had the head thing as well. I also get something similar in my midsection, like a twisting jolt in bed. I have found that distraction works great as well, even if it’s something small. Almost as a reset button
I know what you mean about the jolt. Sometimes when I'm dozing off I can get a little one off jolt or quiver anywhere in my body or even my face or jaw and that's when I know the limb movements are on the way.
There is so much research they need to do about what's going on with this condition.
Another thing I have discovered is that if I focus my attention on a particular limb or my neck I can bring on the movements there. So if my legs were doing the flying and I then focus on my arm that will go next. Not particularly helpful of course but I wonder if the experts understand what's happening there.
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