How can RLS be classed as a sleep disorder when you can have an attack at anytime day or night mines just as bad in day as it is at night , no sooner i sit down my legs start surly it's a muscle disorder not sleep ......
sal
how can RLS be classed as a sleep dis... - Restless Legs Syn...
how can RLS be classed as a sleep disorder ?
67 Replies
•
well i know it knackers my muscles after an attack 
but im sure its a neurological condition, not sleep disorder...
nightdancer• in reply to
It is technically listed as a sleep disorder and a movement disorder., one reason being that most RLS does occur at night, and that is what most literature shows. BUT, lately more and more people are saying that they get it more and more during the day; 24/7. Most early studies labled it as a sleep disorder because of the severe sleep deprivation it causes, and normally it does floow the body's inner clock. Cramps are msucular, but not RLS. We may find in the future that it is nerve disorder, because of the involvement of the spinal fluid "excitement" shown in sleep studies. Some doctors are saying we really have to look elsewhere besides the dopamine system, because so many people do not respond to the dopamine meds. It's all going to change as they keep studying it. It was first described as movement disorder, but got thrown into sleep disorders because it does cause such sleep deprivation.
• in reply tonightdancer
hi thanks for the reply , i have it 24/7 get it as bad in the day as i do at night 
no chance of catching up on any sleep last night was my worst night other wise i've only slept 4 hrs this week so far ,
at night can be just nodding when i start to itch then the legs start then the arms and so get up do this several times during the night in the day can't even sit to watch a film all the way through can be on my feet all day then come dinner time sit to eat damn legs start and so i feel im on my feet 24/7 gggrrr ,
have had meds but seem to become either immune after a few days then up the dose thats when they make me feel ill bad head, or feel sicky , that's why i asked the question how can it be a sleep disorder when it happens during the day i'm getting to the point where i feel im going nuts and finding im getting rather nasty tempered which is so unlike me ,
thats what i mean it's not a sleep disorder when it can happen during the day i can have an attack of RLS any time day or night hmmm...
nightdancer• in reply to
It is changing as they find more and more info from the longer studies.
well theres so many different doctors who have such different thoughts and ideas on it, my neuro told me today that "drug holidays do not work" this after i told him they work for me pfffff told me to get plenty of rest and no stress, its bad for my b/p, all this is to do with the stoke i just had, excuse me RLS!!!! not sleeping !!! and he wont change my rls meds,!!
• in reply to
agree.............. with you ... half them don;t know what they're yapping about ( gawd i must be ill )
This doctor's a idiot.
• in reply tobeardedtwitch
agreed... but hes a consultant so im stuffed basically
Hi Gypsy63, primarily RLS is a movement disorder as opposed to a sleep disorder, however, because 'typically' it occurs in the evening or at rest, sleep deprivation occurs and it is mistakenly assumed to be a sleep disorder - it also gets misdiagnosed for PLMS (periodic Limb Movements in Sleep)
When I carried out my dissertation research on the condition for my first degree, the literature (admittedly mainly from the US, cos the UK are waaaaaaaaay behind!) refers to it as both a sleep and movement disorder. I cant remember what it is classified as at the moment in the DSM or the ICD, but I could probably dig out my dissertation and check once I have finished my marking!
I know what you mean though it is as frustrating as heck, I had a meeting with a colleague this afternoon, and could not sit, I had to stand throughout - I felt a right plank!
Don't know if this helps you at all?
Best Wishes
Ellie
• in reply toPinkEllie
thats how i was at my neuro appointment, but his to busy fiddling with his hair in the mirror to notice me.
• in reply to
and we would love for you to dig it out for us
PinkEllie• in reply to
just noticed your avatar - that is very very funny! might have to pinch that to use on my FB account! ha ha x
• in reply toPinkEllie
i have it on mine
• in reply to
ok you can pinch it but there will be a small finders fee
nightdancer• in reply to
I am going to pinch it, if I haven't already
• in reply tonightdancer
ooo the nerve of the woman, i thought you did agesssss ago !! dont forget the fee
nightdancer• in reply to
the check is in the mail!
• in reply tonightdancer
hmmm think i would rather have a male in check, thanks 
• in reply to
I got this avatar too, got mine for free from niah..!!
• in reply to
oi shhh.. i willl share the profits with you
• in reply toPinkEllie
i've got it on my fb too lol hmmm think thats where niah nicked her's from lol
x
• in reply to
nope ive had it at least 3 years now so there !!
PinkEllie• in reply to
now now girls, no bickering!!! It's really amusing! not you two arguing, the avatar! 
• in reply toPinkEllie
pff, i think us argueing is fun to, dont be a spoilsport pinkie
• in reply to
lmao she's always picking on me Pinkie hmmm give her the sack lol Xx
PinkEllie• in reply to
Sorry, blame it on the day job! Stuck in teacher mode after a day of hormonal 15-16 yr olds 'bickering' ha ha bicker away! Don't let me spoil it 
• in reply to
lmao to you too let you off i guess .... hehee good job your getting use to my humour lol
• in reply to
ooo your sailing veryyyy close to the wind young lady ! grrrr ;/
• in reply to
lol shhhh.... i hope i dont get sea sick too lol xx
• in reply to
lol... i only get sal sick
nightdancer• in reply to
thanks for the laugh. I have been dong what it says in Niah's avatar all morning.
• in reply tonightdancer
nothing out of your usual routine then mrs !!!
• in reply toPinkEllie
thank you for reply know exactly what you mean when even the simplest of things in life gets taken over by RLS such as sitting talking to friends or like you in meeting with someone can't sit still for a moment which is why i thought of the question how it can be called a sleep disorder when it happens any time ,
would be great if you could dig out info ... and yes we're wayyyyyyyyyyyyyyy behind even seeing dr's that understands what we're on about is hard then trying to get them to understand ,
would be a great help thanks
I think there are possible two answers to this question.
Firstly, yes, RLS can come on any time, day or night, However, if it lasts for many hours during the night, one would suffer from sleep deprivation and feel very tired the next day. Accumalative tiredness can cause all sorts of health problems.
Secondly, based on my own personal experience, the expression RLS is often incorrectly used to cover two conditions, which can lead to confusion. RLS per se can affect one any time and you know it! However,the similar but not the same condition, Periodic Limb Movement Disorder (PLMD) is only there at night and you don't know it (but your sleeping partner does!).
I have had RLS for as long as I can remember but it wasn't until I went to a sleep clinic for oud snoring that they diagnosed sleep apnoea and PLMD (and gave the "evening kicking legs" I've had since boyhood a proper name, RLS).
So, I think that could answer your question: PLMD, which is a sleep disorder is often called RLS in error.
All the best, Tpebop, Kent, Britain.
• in reply toTpebop
mine last days and days not hours ggrr be easy if it did getting beyond the joke now ... i've not got a partner so can't ask how i am when and if i sleep lol ,
all i know is when i do go to bed just as im settleing down i start by itching then along come the muscles but thats how i am in the day too no sooner i sit down i start including the breathing like im sighing...... muscles goes into spasm more i try keep still ,
i've had it since i was about 8yrs old ,
as said try getting a dr to understand is hard work ,
got meds but seem to stop working after 3 nights up the does i get bad headache no win game gggrr
Yes, but RLS DOES happen at night when you are pacing the house. That is why we are pacing all night,, and lots of us DO do it 24/7. so, you can have RLS ALL day and ALL night, to be claer. PLMD happerns when you are asleep. RLS happens when you are awake. It is actually classified as a sleep related movement disorder, not a full on sleep disorder, but the sleep deprivation comes along with it, so it has to be considered "sleep related". How's that?
Ha ha PinkEllie beat me to it! T xxx
In the new DSM 5 which is due for release in May 2013, RLS is categorised as a Sleep-Wake Disorder, the DSM-IV classified it as a sleep disorder, I'm not sure on the ICD, I will look into that too xx
PS The DSM, for those who are not aware, is the Diagnostic and Statistical Manual of Mental Disorders version 5 now! The ICD relates to the International Classification of Diseases, that was at version 10 last time I had to use it, goodness knows where it stands now! Apologies if you all knew, just playing safe!
• in reply toPinkEllie
still can't see how it can be a sleep disorder when its muscle that keeps you awake or from sitting down for long time very confusing ..... it's a neuro problem that makes your muscle go nuts ... ohhhhhhhhhhh heck.... yep confusing .....
• in reply to
yep cos your brain tell your body wot to do !!! you with it now dear...lol
• in reply to
got that bit..... lol now.. but still not a sleeping disorder bloody brain working over time on the muscles only good thing with RLS ive got good muscle tone for my age apart from the bags under the eyes... ,
thank you for the reply Pinkie just working out why the medical people make it so hard on something they don't really understand themselves yet don't listen to us
xx
nightdancer• in reply to
it is not muscular, it just feels like it, Sal. It is what Jean said-your brain telling your body what to do. Your muscles may get tired from all the moving, but the actual RLS has nothing to do with muscles.
People sometimes get muscle cramps mixed up with RLS, not saying you are at all, just some people do, even doctors and nurses.
That is why sleep doctors and neurologists generaly know more about RLS than other doctors. They are the only ones who study sleep disorders in medical school. Very little study on sleep disorders is required for a GP to get his/her medical license. Literally, in the US, anyway, they spend about 4-6 hrs on all sleep disorders for their whole time in school unless they pick it as a specialty. very sad and ridiculous.
PinkEllie• in reply to
its Dopamine which is implicated, but precisely 'how' remains the question! Lots of progress has been made into the physiological origins, but the fact remains, everyone responds differently to treatment which makes it all the more complicated to establish the precise aetiology (or etiology!)
It is not necessarily the muscle which is the problem, more the neurotransmitters which relay messages from the brain. If the excess (or lack) of dopamine is giving them the incorrect message to begin with, they only 'do' as they are instructed by the brain - does that make sense or have I made it worse?
Niah177 beat me this time, and reading it back, I think i basically said what you did! See THIS is why I need to win the lottery so I can do my PhD and continue MY research! 
• in reply toPinkEllie
if i did the lotto and won i'd give you money to do your PhD to continue your research ... maybe we should set up a funds thingy ...
xx
• in reply toPinkEllie
if i win it i will sponsor you hows that.. and Sal can carry your bags for you
• in reply to
hahahahhaq your to kind ...... knickers...come to mind
• in reply to
no dear i said bags
• in reply toPinkEllie
aahhhhhhhhhhhhhhh with you now.............. oh gawd what a silly moooooooo i am lol
understand all that ... but still not a sleep disorder ... ,,
know what you mean bout meds though i know everyone i've been on i become immune to really quickly and they stop working , something else i've never had a cold in my life and very rarely ill never pick up bugs when they go round either ( thankfully)
• in reply toPinkEllie
It must include the nerves. the nerves make your legs jump...??
PinkEllie• in reply to
kind of..... the neurotransmitters send the messages through the nerves - we're get very biological now! ** I must not be in teacher mode!*** xx
• in reply toPinkEllie
Sort of what i meant.....everything comes from the brain. So, movement being one, so the brain is giving the neurotransmitters wrong messages sending them through the nerves which is causing certain nerves to give us the weird sensations and in turn makes our legs jump,....Sounds right.....yes....no...??
A study in Australia showed when they did MRI scans on people with RLS and those who dont. The RLSers movement part of the brain showed different to people who didnt have RLS. That study needs to be expanded on, it might just hold the answer or part of the answer to why that part of the brain is different for us...
I should have learnt more at school, as i have always had a fasination with how the human body works...
nightdancer• in reply to
You are not medicated, so it is going to show up during the day, too. The more you have it, the worse it will get. And, when it gets that bad, it is very hard to stop it, unfortunately. what meds have you tried??
• in reply tonightdancer
going Dr's monday hopefully get something sorted once and for all did ask the Dr over the phone if she knew what RLS is she said just a little hmm so could be fun ... tried Ropinerole,Pramipexole both them worked for few days then stopped so up'd the dose as told worked for few days then stopped but gave really bad head and made em feel sicky kept to them but then started making me ache every where ,have tried meds they give to folk that have fits can't remember the names of them tabs few yrs ago dr gave me antidepressiants hmmm they made my life hell made RLS worst ,
at the moment im on nothing need ask dr why every now and then i ache all over to the point it hurts to move of course have to move with RLS gggrrrr ,
so......fingers cross monday i'm writing all the meds down and taking list with me just incase lol
I hate that it is listed there in the DSM. I had sent that to my groups last years some time. It is NOT a mental disorder in any way, excpet that we FEEL mental most of the time. It does not help our cause one bit that it is listed in the DSM. I wish that would be removed from there, because Ekbom Syndrome is the mental disorder, not RLS. Ekbom Syndrome is when people think they have real bugs crawling under their skin, another reason not to have a name with Ekbom in it since it is psychosis. That is one reason to fight the name change in the US. I am very glad it is not being changed over here for my friends in the UK, but it drives me nuts using "Ekbom", and then having it listed in a mental disorder manual does not help. Thanks for your info, and for reminding me about the DSM!
HADNT A CLUE ABOUT ANY OF THAT THANKS PINKIE
;s haha. Like that you started Pinky..My legs and arms jump in
my sleep. My hubby says that my legs never stop moving...
in my sleep. He's a saint for putting up with that.
• in reply to
hmmm, thats PLMD surely ?? (periodic limb movement disorder)
nightdancer• in reply to
Yup, PLMD is when you are asleep. I used to kick my poor dog out of bed, but only knew about it when he went flying, or I would wake up in the a.m. and my covers would be on the floor.
I did read somewhere that there is a gateway mechanism in the brain to cause sleep that isn't working properly with rls but that doesn't explain daytime symptoms .
Our inner clocks get all messed up with RLS, so probably the "clock" is the gateway mechanism. r the lack of a "clock". As we get older we make less melatonin, less dopamine, and we absorb iron at a slower pace. So, we have it all working against us.
I do not know if it is classified as a sleep disorder in
ICD-10
What I know is that it"disorders" my sleep most nights.
It has kept me awake up to 72 hours- result an epileptic confusion seizure
sorry to hear that but pretty much same here keeps me awake 3 nights in row pretty often but then can't sleep in day either due to the fact RLS sets off no soon i feel settled so don't bother
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