My legs jump and jolt ONLY when I doze off, at night. The actually falling asleep triggers it. Otherwise my legs are fine. Does that mean that my RLS is relatively mild, or...?
Also curious as to why the dozing off is the trigger. Dopamine a factor?
Thanks for any insights 
It means you don't have Restless legs syndrome. Simple. Rls stops you getting to sleep.
However-( and you'll be so glad to hear this 😊) what you do have , is PLMD.
Now! Isn't that better ?😊
It's very similar, and is treated as a sleep disorder. But not the remit of this site, or within my limited competency.
(Periodic limb movement disorder) in case you were wondering!😉
Cheers.
Interesting but I think you're wrong, my RLS always woke me up about 40 mins after I fell asleep, it also struck while I was awake sometimes.
Quite, RLS causes you to wake up, PLMS doesn't. You can have PLM when awake, but it's unusual.
However, us folk living nearer the European continent tend to make mistakes at our time of day.
I’m sure it’s different for everyone but PLMD causes me to wake multiple times during the night. It was how I was diagnosed in the first place.
Yes, you're correct, it may be different for everyone. Not waking is the text book pattern for PLMS and is my experience of it. I had both RLS and PLMS. I have no information on statistics but most people, I believe, don't have a clue their legs are moving and only have it confirmed by sleep studies.
However, even if PLMS is not waking you up, it doesn't mean you're sleeping well. You will miss out on deep sleep, which can cause fairly serious problems.
There is a significant difference, I think, between having leg movements before and at the point of falling asleep and having them whilst asleep. One is, that you may not have any sleep at all, as has been my experience of RLS. Strangely, I haven't had PLMS for years according to my wives.
Having looked at descriptions of the leg movements in PLMS and my own keg movements, they are different and a neurologist agreed with me. Furthermore, as far as I'm aware PLMS affects legs. My twitching, due to RLS, is more or less all over, legs, arms, shoulders, abdomen.
Hi, sorry again Madlegs, I don't think Madlegs has got it quite right OR maybe I haven't.
If you're saying your legs start jerking just as you're falling asleep, before you completely fall asleep and actually prevents you from falling asleep. This is RLS.
Periodic Limb Movement whilst Sleeping (PLMS) occurs when you are actually asleep and you won't be aware that your legs are moving.
I take it you mean the first of these, in which case you are experiencing exactly the same as me. It was 12 years ago that I was referred to a neurologist because I was unable to get to sleep at all because of the twitching of my legs. The neurologist diagnosed RLS.
I again saw a neurologist in 2012 as again not sleeping. Again the twitching was discussed and he thought this aspect of my symptoms was not Periodic Limb Movement.
To this present moment, if I become sleepy during the day and try to take a nap within a few minutes I am prevented from falling alseep by the twitching.
I DID suffer form PLMS in the 1980's. However I did not know that it was PLMS at the time and have only realised it more recently. The only way I know that I was having a problem at the time was that my wife told me I was kicking her in bed., I had absolutely no idea that I had been.
The movements due to PLMS are described as "Involuntary" and in RLS the description is "irresistable urge to move". Certainly, if you're asleep, it's defintely involuntary because you're unconscious. However, I think there's a very thin line between "involuntary" and "irresistable urge". After all, if you can't resist it, then it's not voluntary.
To cut a long ramble short.
The symptoms you describe are not unusual. It's most likely RLS. You could have PLMS as well, 80% of sufferers do. The teratment for both is more or less the same.
RLS/PLMS are circadian conditions. They occur at particular times of the day as they are associated with daily variations in hormones and neurotransmitters. The neurotransmitter Dopamine is a significant factor in RLS/PLMS and symptoms will be worse when dopamine levels are at their lowest during the day. This is usually in the evening and especially as you're very sleepy.
Damn. Okay, thanks for the info.
Sorry, bad news? If you're twitching so much that you can't get to sleep regularly, I'd say that was more than just mild.
Hopefully others on here will give you advice on the various non pharmacological things you can do to relieve your symptoms. If you've not yet been prescribed any medication for your RLS and are thinking of asking for some, there are medicines.
However, in relation to dopamine, one group of medicines used for RLS, dopamine agonists (DAs) are very effective (at first) in eradicating RLS symptoms, but can be very problematic in the long term. I would advise avoiding them, there are alternatives. If your doctor suggests a DA, I wouldn't accept it.
Yeah, I said "mild" because I am likely in a bit of denial. I've tried magnesium oil, didn't work, CBD oil, didn't work. Cut out caffeine, didn't work. I may try calcium supplements next, as I've also radically decreased sugar and gluten.
Wonder how much stress has to do with this? And also, the quality of air I am breathing? Moving from the beach in Los Angeles (really clean air) to Brooklyn, NY (really dirty air) seemed to have made a negative impact. Also, it seemed
in LA that I needed only 7.5 hours of sleep at night to feel well rested, and with very little sleep interruptions. Now, in NY, I need 9 hours of sleep to feel rested, with at least one time where I am awakened and have to get up and stretch and do leg bends and squats to relieve some of the leg tingling. I went to the beach in Mexico a few years back and for 5 days had zero RLS.
Curious why I slept so well? Lack of stress? Really good air.
Has anyone moved to a less air polluted place and felt relief.
And I apologize for such a seemingly ridiculous hypothesis.
I think there's some merit to your hypothesis, especially the stress aspect. Stress is a sympathetic nervous system and hormonal response that can affect the balance of chemicals in your brain - hence RLS. Additionally, there are physical causes of stress not just psychological. This could include air quality etc
Stress is a real trigger for most people with RLS. It's a bit of a vicious circle- you stress about the RLS kicking in ( literally) & then of course it does. I have found deep breathing & yoga stretches helpful. The best stress reliever has been to accept RLS will wake me BUT just to go with the flow- reading and doing housework as a distraction in the middle of the night & then telling myself I will have good nights again. Pollution is a factor I'm sure, particularly in big cities like NY and here in London. I can often taste the diesel fumes in the air.
I suggest you read all you can on this site and ask your doctor for a blood test to check your iron, ferritin and trans ferritin levels. Many people find their symptoms resolve when they raise their serum ferritin above 100. You may be one of them, so consider this before any meds.
Some people have reported relief using folic acid, also upping their iron levels.
Yes, more specifically vitamin B12 and folate. B12 can be a bit of a problem because there can be difficulty absorbing it from the gut. Iron is even more problematic, again because there can be difficulty in absorbing it and also because you can only take so much. It is a toxic metal.
There was once a french guy who ate metal objects He ate them a bit at a time. It took him a long time I recall, I don't recall how long, my memory's a bit rusty.
His name was Michel Lotito, he died quite young!
en.m.wikipedia.org/wiki/Mic...
There was also an Australian man who ate a whole car. It took him 4 years. Something must have driven him mad.
I have both RLS and PLMD. Quite which one wakes me sometimes when I am nodding off i don’t know but that was how my experience with these conditions started. Just drifting off then twitch back to wakefulness. Thankfully it is largely under control now
This is called a hypnagogic jerk, it is quite common and not problematic.
It is an interesting phenomenon, I myself used to have it but no longer. My RLS remains.
You might be tempted to confuse hypnagogic jerks with the twitching caused by RLS. They are very very different.
A hypnagogic jerk is a singular almost total body spasm and it feels like you fell off something. I once read a theory that it is an evolutionary remnant dating back to when we lived in trees. As babies we went to sleep clinging to our mum and if we let go, we'd probably fall to our deaths. The jerk then is a kind of reflex to prevent this.
I've never lived in a tree, but I'd like to. Avatar comes to mind!
RLS twitching is not so total a body thing and it is repeated jerks and if you try to wait it out, it can last for hours. Even when you're now completely awake.
I think of it as exercise without effort! Probably not a good idea however, if you live in a tree.
That is very interesting, thank you Manerva.
Hello kenBR
NO ONE REALY KNOWS WHAT CAUSES RLS
BUT THERE ARE SOME THINGS YOU CAN TRY IF YOU RESEARCH MAGNESIUM DEFICIENCY AND SYMPTOMS OF MAGNESIUM DEFICIENCY ALSO VITAMINS D3 K2MK7 IF YOU CAN DO A HEAVY METAL DETOX COULD HELP ALSO LOOK AT REDUCING YOUR VIRAL LOAD IE LOOK AT L-lysine to help with this . My explanation of why you get rls just as you fall asleep, durning the day you’re brain is busy as you fall asleep your brain starts to relax
If you have heavy metals like mercury,Aluminum in your brain the heavy metals interfere with your brain causing the rls it can also cause involuntary movement anywhere in the body .also research drinking celery juice first thing in the morning good luck
There are a few causes of secondary RLS. "Idiopathic' or primary RLS is a different matter and idiopathic roughly means no known cause.
However, as if often the case when it's said there's no known cause it means not yet.
Many such 'idiopathic' conditions have been found to be constitutional due to complex genetic factors. There is some research unto RLS which seems to support this. There are also known mechanisms involved including a failure of dopamine receptor sites in certain parts of the brain and oversensitivity of motor nerves in the spinal chord. The neurotransmitter glutamate is also involved.
The genetic factors in RLS are not simple like blood type, hair colour or inherited conditions such as haemophilia. Some condition which have complex genetic factors require both an inherited disposition plus some other trigger. Not everyone who is a descendant of someone with RLS has RLS. Identical twins don't necessarily both have RLS.
There are quite a few conditions associated with dopamine overactivity or underactivity in different parts of the brain including RLS, Parkinsons, Attention Deficit Disorder, addiction and Schiziphrenia.
This means any treatment for dopamine underactivity may cause a condition caused by overactivity and vice versa.
But yes having heavy metals in your brain isn't good in either the long term or short term. Mercury and lead are the main culprits. Aluminium isn't heavy, but it's still toxic nonetheless.
RLS however is associated with NOT ENOUGH iron.
How do we check metal & mercury levels on the brain? MRI of the brain?
I imagine the only certain way is by post mortem. You would only suspect it if there was a history of exposure to a particular metal and symptoms of some kind. E.g. if you've lived for a long time in a house with lead water pipes.
Mercury used to be used in thermometers and pressure testing devices such as barometers and blood pressure machines. They're not so common these days.
In the UK there are COSHH regulations which Control the use of Substances Hazardous to Health.
It may be possible to detect metals in cerebrospinal fluid which can be drained from the spinal chord. But nobody would do that if there wasn't a strong suspicion.
I believe there have been studies in relation to dementia, but as I say, I think they were post mortem.
There's no way of scanning for a heavy metal unless it's a radioactive isotope.
You are awesome. Thank you for replying to me but also for all your insightful other replies.
I am 49, the day before Valentine’s day I ate 3 delish (reason I ate all 3) french pastries. That night is the 1st night I discovered I had RLS (in my right leg). I panicked as I’m otherwise a healthy person. I don’t drink (socially only - once every few months) and I don’t smoke.
I totally freaked out and made an appt w/ a Neurologist. Nothing to worry about, thus was not given meds to control. Eventhough I have excellent insurance, they said they will not cover the cost of a MRI so I continue(d) my reserach on all RLS.
I started taking iron, zinc & magnesium which helped BUT I also noticed that I had to watch my sugar intake and carbs intake (I’m addicted to rice which turns into sugar ofcourse). What has REALLY helped me is drinking oodles amounts of water. I start drinking water @ 7 am and try to stop by 2 as I have an hour + commute. So please al try this. Yes you have to wake up more to go to the rr but you don’t have that awful feeling.
I also read about sensitivity to for lack of better wording “scents” in your environment, which supposedly has something to do w/ chemcials in your brain too? I live in an old building and need to look into doing an air quality test. I also have a neighbor downstairs who smokes like a chimney which seeps into my unit (no I don’t have the finances to move at this time).
I do also think that STRESS has LOTS to do w/ onset of RLS. I have a very stressfull job + commute (7-7 M-F).
I don’t believe in man-made meds so yes the supplements I take but anything else I hopefully don’t have to take but will as a last resort.
Anyway thank you for your insightful info. Much appreciated. Love this place where we can help each other.
Perhaps you should first check that you have RLS at all. It does not suddenly appear. You might have it for a while and not noticed it and then something's triggered an exacerbation. Danish pastries, if that's one of the things you normally eat, isn't likely to be a trigger.
There are known triggers for exacerbating RLS if you have it. Alcohol and caffeine don't help. There are some medicines that are triggers.
Diagnosis of RLS is mainly by symptoms alone. However if it's suspected that the RLS is due to some underlying condition. then blood tests can be done. Iron deficiency and kidney disease can cause RLS for example.
An MRI will not detect RLS. Unless there is any strong reason to suspect another neurological condition due to physical changes in the brain or spinal chord an MRI won't be of much value,.
You can find a diagnosis checker here
You can have an underlying susceptibility to triggers with rls. Like alcohol or sugar etc.
Many people never get an attack unless they take a trigger substance.
That was my experience before I had the spinal reconstruction and was put on heavy opiates for pain. Now I have continuous rls unless controlled by opiate.
Yes not enough iron reaching the brain
I started many years ago with random jerks in my legs on closing my eyes to sleep. Similar to when a dr does your reflexes! Then after a traumatic couples of years from 2014 they are with me every night and sometimes my arms and torso. I was referred to a neurologist and had a mri and she put it down to a highly sensitive nervous system. I have suffered anxiety and panic for 40 yrs which at times has been chronic. Now I have started what I believe is another disorder where I can act out my dreams so I can end up kicking out or flaying my arms, this week I bashed my foot on the side of the bed frame and it really hurt. Also I can shout and swear (like a fishmongers wife), something out of character for me !
"HIghly sensitive nervous system", from its description, appears to be an overactive sympathetic nervous system. The sympathetic nervlous system is part of the autonomic nervous system. The symptoms of it are anxiety symptoms.
RLS on the other hand is an oversentivity of the motor nerves of the somatic nervous system.. Dopamine is the "braking system" of the motor nervous system and without the brakes the system becomes "oversensitive". This is demonstrated by the use of Gabapentin, which reduces nerve sensitivity, and also relieves RLS symptoms.
Alternatively, anxiety can cause "nervous" type symptoms, such as shaking, tremors, unusual sensations and so on. I have experienced these in the past and found a beta blocker helps.
They are qualitatively different to RLS in that -
RLS gives you an irresistable urge to move, which is relieved by moving.
RLS generally appears in the evening, anxiety any time.
Being "sensitive" emotionally, (or anxious), is not the same as motor nerve sensitivity. Perhaps you should look at the symptoms of RLS and see if they describe what you experience, you may have RLS after all.
Acting out your dreams, I read may indicate that you have "parasomnia" or REM behaviour disorder. Presumably it's someone else that tells you what you do, as you will be asleep.
You may find this link informative
Not often but before my RLS “kicked in” (pun intended) I at times would yell and scream in my sleep when I was in a scary situation. I would also physically fight. This all happened before the onset of RLS. As I don’t sleep ling enough now to dream because of RLS, I have not had those episodes.
My RLS is exactly what you describe. I have had it for over 55 years, getting progressively worse. Almost everything I have tried seems to work for a while and then doesn't. If you haven't tried it yet, use an analgesic like A535 or Voltarin. Apply it to your legs as soon as the twitching starts or before getting into bed. Simple remedy.
Have any of you have had been told by friends or family that RLS it's only on your mind?
I need help coping with my RLS
I thought my restless legs were a symptom of my Fibromyalgia, but could I have RLS as well?
Does this sound like RLS?
What can I do to help my wife with her RLS?
