It's 3am and i can't get settled ggrrrrrr 
only 9hrs sleep for the whole last week nowt on tv at this silly hour what there is got no subtitles ...... other than pulling your hair out or getting a chain saw to legs and arms out of interest what do others do when not sleeping ?
sal
know the feeling sal
i never slept much at all last night
isnt it awful when u wide awake and everyone sleeping
i thought i would have slept this morn , but dont feel at all tired even though i slept about an hour last night
i watch tv
or go online , or sometimes read
but the longer u awake the more stressed u get
hope u get a decent nights sleep tonight
rosie
hi gypsy, well i either try a really hot bath, just lay and soak in it, or, p/c games, concentrating on something else instead of the rls, that tends to help, but we all have those nights when nothing works dont we,then we're stuffed, and yes tv's crap atthose hours of the morning.
Hope you get a nap today .
jean
Try itv player on your computer or BBC iplayer with your headphones in. I did that last night and I slept for about an hour laying on the settee. Coronation Street sent me to sleep lol.
Laine
Would go with the hot bath or I get up, make a cup of tea, read a book/go onto laptop...walking around helps too. I've been known to get up and go for a drive - in fact absolutely anything which means I'm not TRYING to go to sleep, if that makes sense. Once you are trying to sleep, not only do you have RLS/neuropathic pain (in my case) to deal with, you also have the anger and frustration of not being able to sleep
Hi
I walk
I sit on my Swiss Ball - see my old post
I over medicate and 'knock' myself out!!! - this one needs practice!!!
I would try the first 2 
Kindest
Bob M
I'm with you Bob with your your first and third options!
I can't sit down, watch TV or anything like that when it kicks in, I would take more pills, go for a walk and hopefully by the time I get back I will sleep!!
I'm already over the prescribed dose for Ropinerole, looking at changing but don't really want to!!
Nev
To Gypsy,
You have all my sympathy! For me it has been "normal" to sleep for just 1 or 2 hours at a time, for years now. I try to accept it because I have learned that worrying about it makes it worse. Like Bob, I take another pill or two, walk around until they settle in, read a book ( it has to be one you really can get absorbed in!), watch a little TV standing up,doing a bit of leg exercises at the same time. Lately I have found a "leg calming oil" has made a huge difference in my sleeping pattern. I can hardly believe that it's true, but so far it seems to work wonders!! Give it a try! Hopefully you can find a product like it in the UK (if that is where you live). Recently I saw a write-up on this site about someone using a "magnesium spray oil" with great success. I have now ordered some. Like so many others, I would love to get off the Ropinirole, or at least get down to just 1mg a day. The oil spray on the legs helps one sleep for some strange reason!
What's the leg calming oil called?
would also like to come off the Ropinorole because of the after effects ie groggy all morning, snappy with people and generally hyper. I use Neupro patches too for 24/7 relief. Also sleep with my bedroom window open.
Sorry you are having such a bad time sleeping Gypsy. I don't suffer in that area quite so much but I find my worst time is in the evening. I cant sit and watch tv as my wriggling and stomping up and down every few minutes means I miss most of any programme I am watching. I love to cook so I find myself baking... bread, cakes or whatever takes my fancy. It takes my mind off things and the family get something out of it too.
Susie
Hi all ,
Like most of you i do the bath thing 2 or 3 times a day do find that helps at the time but no lasting affect not on any meds nothing seems to work for long have tired Ropinirole worst thing i ever tried soon got rid ,weed works wonders doesn't make me high just knocks me out even Dr said to use if it works for me if i can get sadly i don't know anyone that sells lol ,
Love reading but don't even get half page read before the arms and legs start and i'm off... used to do a lot of cross stitch but had to give that up after 10 mins so stopped doing it ,I've heard driving works with most folk sadly i don't drive lol other wise i'd give it go ,
I've had RLS since i was 8yrs old why it's called RLS i don't know as i get it in my arms too ,
I'll give the leg calming a go see if that helps i did try Red vine leaf tablets as someone told me it worked for them but didn't suit me after giving them a go for 2 months not cheap either ,Like you Nev i forget the last time i watched a film on tv from start to end without moving thankfully i live alone so no one else suffers my sudden urge to move about sadly i hate being alone no win situation really,
Hope you all managed to get some sleep i know whether it's an hour or couple better than nowt but give anything to have a full night would be a dream in it's own ,
sal x
i love the "nowt" Sal, havent heard that for ages, last time i was up north in doncaster i think, proper yorkshire word
jean
lol nowt or owt aye both Yorkie words Jean not that i'm from Yorkshire im a Lincolnshire lass but spent time in Doncaster when i went to deaf school there just something i picked up i guess and never left ,
sal x
shh your making me homesick Sal
jean
I am sorry to hear you are having a grim time of it, Sal. When I get an "attack" I go eat something, go on line or walk about the house a little. Eating something often helps me but you cannot keep doing that on a regular basis, can you? ;)
Kaarina
opppsssssss sorry Jean lol 
Hi Kaarina at this min my attacks seems to be lasting months can't remember 4 or 5 hr sleep let alone full night oh...i walk about ,eat,bath,exercise anything and everything apart from knocking myself out with a sledge hammer .. have even asked friends if they own a chain saw lol not a great thing to think about but gets to that point,
sal
Hi everyone, catching up, i too didnt sleep much at all last night. Its happened a few times in the week. So, i have just upped my dose of the patch, and i am expecting it to knock me out in a couple of hours (its 18-40 now) and that will mean a very early night for me.
I did think about adding a half of pramipexole, but decided it would be better to use that when i need a drug holiday from the patch. I dont like the pramipexole, or rather it dosent like me, as it makes me really sleepy in the day. But, if and when the patch stops working, then i will use the pramipexole for a few weeks, then go back to the patch. Last time i did that, i went back to a lower dose of the patch.
Lets hope we all get a better nights sleep tonight.
Irene..
Glad you found something that works wish i could do the same legs already on the off so.... my nights already buggered up i don't take anything now after trying everything else not sure why but i seem to become immune to meds rather quickly ,
as said last week 9hrs sleep in all wonder of we ever catch up ,
hope you have a peaceful night with pleasant dreams
sal x
I've taken to doing jig saw puzzles. It really helps pass the time and can be done standing up. Vic
I have upped my dose of the patch, and it hasnt knocked me out yet. Legs are twitchy.....going to go to bed and just see what happens.
Could be another night of up and down and walking in the kitchen.
I do sometimes use a heat pad, it helps if the symptoms do not get out of control, otherwise its useless.
So sorry Sal, you havent found anything that helps you in the long run.
And no, we never catch up on the missed sleep.. I'm sure thats why i look so haggard..
Wish i could suggest something for you to take, but if you have tried it all, then i wouldnt know what to tell you to try.
When i have a bad night of no sleep, or very little. I am useless the next day, i really cant function.
Irene...
Hi Irene
hope you manage to get some sleep tonight same here mine started earlier first the twitching then the crawling now the urge to walk the ceiling ,
going for me bath soon soak for half hour give me a rest ,
nah....don't think any of use catches up with lost sleep or we'd be in bed for good few years lol , o.......h im the opposite to you if i don't sleep i'm really hyperactive all my friends think i run on adrenalin and that one day i'm going to blow a fuse lol ,
No worry on suggestions im sure one day there will be something on the market that will help us all we can all hope
Marty
thanks for the suggestion of doing a jigsaw Marty i'll give it a try use to do them as a child but always seems to slow a thing to be doing thats just me being me only time i do find myself nodding is when texting on mobile lol purely because i'm so slow at doing it lol
sal x
Hi Sal,
I wish I had any great ideas for you. I do find the Southern Carlifornia RLS Support Group quite interesting to read.
I found this site when I was looking on the net, in desperation, when unable to sleep.
I will not say "night, night, sleep tight" but I really hope you are able to get some good zeeeeeeeeees.
Kaarina
Thank you Kaarina
have been looking for that site for the last couple years i used to have it on my old pc till it blew up and couldn't find it again aye it is a good site ,
I like the idea of the medical alert card in case of accident ,
thank you i hope so too and hope you get some sleep too
sal
Hi, Sal, here is another suggestion for you. Look at this website...rlsrebel.com This is a really lovely lady, who although i dont know personally as she is in the States and i am here in the UK. I have "known" her for a few years through cyberspace.
Her website is free for all to look at, Jill doesnt use medication for her RLS, but has found a way using different technics to help relief her RLS. Its NOT a cure, just a way dealing with it. You might find some or all of her "Tricks" help you in some way...
I did actually sleep last night, the upping the patch dose worked....just hope it stays like that now....
Irene...
The website i have put on the above, hasnt highlighted ,so Sal, or anyone who wants to look, will have to put it in a search engine...
Irene..
Thanks Sal, i guessed after i submitted my comment that was why it didnt highlight....silly me....lol..
Irene..
aye.... lol i've yet to look lol gawd know why i haven't ,
hope you managed to sleep last night ?
sal
Well, that website isnt going any where, so look at it when you have time..It has a lot to it, so you need some time to look through it all.
Yes, thanks i slept well after upping my meds, dose. but have been really sleepy today, that always happens to me. I am hoping it will wear off and i can function tomorrow without feeling drowsy...
Irene..
Evening
aye i know not going anywhere lol seem to get started on something then onto something else but nothing seems to get finished lol usually when im shattered ,
glad you slept last night shame though you have the after affects i know i find if i sleep i actually feel rougher than when i don't guessing the bodies not use to sleeping ,I didn't sleep last night again.................... already left legs on the go finding it hard to keep still and type gggrrr ,
hope you sleep again tonight without the upping of meds so you feel ok tomorrow ,
sal
Thanks Sal, i cant really up the meds, anymore than i have because i will really be out of it the next day. Tried that once before and then had to come off that med. which by the way is the Neupro Patch. I have a very low tolerance to medication for my RLS, which is why i have tried them all. The patch has been my life saver so far out of all of the others.
What i will have to do if it gives up on me, is a drug holiday.
Sorry you have such a rough time of it, i really dont know how you cope...
Irene..
Your welcome
guess it's knowing your limits with the meds and when to take them would think also depending on what your doing the next day lol ,
I've tried all sorts of meds they work for a very short time then stop even upping the dosage doesn't help and so...for the last couple so years i've not been on owt , i'm even amaze how i manage on so little sleep but guess it's in the case of having to,
night night all hope you sleep
sal
Sal, have you e-mailed the doctor on the rlshelp.org site,
I have done that a few times to ask for advise and help with medications.
As he specialises in RLS, he may be able to suggest something for you to try that would work. You would need to tell him a bit of your med. history, as in what you have tried and nothing works for long... might be worth a try...
Irene.
Hi Irene
aye i did in the early hours got reply saying to use proper grammer hmmm hard to do sometimes write in deaf English don't use commers ect! spell checker did all the spelling so know that's right lol but rest of it hmm....
oh well i'll get mate check it out for me on the grammer lol
sal
ohhhhhhhhhhhh most probs forgot full stops too never know where put em lol
sal
explain about that problem Sal, they may give you a bit of leeway,because of it,
jean
Hi Jean did what you said thanks got that and got a reply not that was much of one but then didn't give an awful lot of details guess i was expecting the same as last time returned email lol ,
hope you've had some sleep
sal
aye could try that's if they read it lol could put it on heading i guess
thanks Jean
sal
Good idea to get you e-mail checked Sal, before you send....I think its mostly because that website puts all the e-mails into its letter page for others to read.
Good luck, hope you get your e-mail sent off to him...
Irene..
For me, when I have RLS in my arms or legs, I have to move around - sitting watching the TV or using the computer make it worse. I don't want to wake the family up so I have to find quiet jobs around the house. My husband thinks the fairies come out at night as he gets up in the morning, the ironing is done, presents have been wrapped, cleaning done etc! I find if I'm up with RLS, I then get hungary and do eat cereal or toast but this often makes my RLS go. Problem is, I've put on weight!
Hi
same here in both arms and legs 24/7 soon i sit down to watch tv or computer ,playing cards even doing my crafts ohhhhhhh forget about reading thats worst,
I use to be cleaning my windows at 5am in the summer or like you pottering about trying to keep quiet but now on my own do as i please lol,
snap i get the munchies when im up in the night no matter how many times i go look in the cupboard in the hope something different pops out at me lol but for some reason i've lost a stone and half in matter of few months must be running bout more trying keep warm lol,
sal
I find that the more I stress about RLS the worst it gets, I don't take any prescribed drugs for it, when I get attacks the one thing that does seem to work for me is either a cold floor to stand on or open the freezer door and stand in the cold air. Another one that helps although not the best answer "slap the crap out of the offending leg" works but not all the time.
Hi
know what you mean and agree the more stress you get the worst it gets and like you i don't take anything as have tried just about everything
anything cold actually hurts like hell when my RLS is bad even going to the loo unless someone warms the seat up lol bloody hurts , like you i've beaten the crap out of my legs and arms before now to the point of them being black and blue but that was when i was a lot younger like you said sometimes works but not always ,
when i was a child i'd stretch me arms under the sides of the bed and pull feeling they needed to be stretch what was i to know at 8 yrs of age ,
you ever feel like getting a chain saw out ? hmm... not the best of ideas but a passing thought at bad times ,
sal
Awwwww Sal, Ive been the same with my legs where I want to beat the wotsit out of them. I do sometimes when I get really stressed. My RLS has been really bad since I had my back operation at end of February. I think Ive suffered with it since I was about 8 years old. It seems like its been all of my life anyway!
When I was little I'd try to hang my legs out of the bed too.
I try stretching my legs out with the pain and it just gets worse, but I still do it. Strange! I get stressed before Ive even got to bed.
When its bad I cant concentrate of anything at all. It drives me mad!
I hope you are getting better and have had some rest.
Laine
Hi Laine
know what your saying as i was about 8yrs old when mine started i remember as a child in a single bed laying on my belly putting my arms over the sides and pulling because that's what you felt you had to do ,
I sleep with my feet hanging out the bottom of the bed even now when really bad i'll not have any covers on even in winter and believe me my bed room is freezing and so i try sleep with my teeth chittering and legs and arms going for it ,
I think most of us feel we have to stretch not that it helps but the sensation makes us do it anyway i always know if im in for a bad night as i start itching for no reason then have to get up lol ,
I message a site last week where a dr replies and did get reply i asked why is it when in my arms my speech and concentration goes he said it was common for that to happen hmm...
hope you manage to get some sleep tonight
sal x
Hi Everybody - I'm a 62-yr old (dear God - don't feel that old!) woman, & I've just printed the forms for joining, and will do so shortly. I was triggered to do so by a particularly bad night's sleep last night - normally, if desperate with RLS (and arms too, often!) at night, I watch TV until I drop off out of sheer exhaustion, and usually when I wake up again the RLS has stopped. What worried me was that when I awoke at 4.00am, havinf slept for about an hour, I still had it! This is new, and I do seem to be getting more and more 'attacks' as I get older. Typically, this is in bed at night, or in an aeroplane, or cinema or theatre seat - I gather this is pretty typical of most peoples' experience! I think it may have something to do with my diabetes type ll, as well - anything high-ish in carbs (including wine etc) taken during the evening will make it worse. Does anyone think, too, that as you begin to fear this disturbance every night (and before every plane journey), it becomes a self-fulfilling prophesy, and we make it worse by autosuggestion? I'd welcome comments from any fellow-sufferers, as it is a crashing nuisance in my life, alongside one or two other health problems I won't bore you with!
Hi Ginannie
Like you i have it in my arms too and can be up for nights on end with little or no sleep I've had it since i was 8yrs old and seems to be full blown now with RLS,
Also like you sitting in one position brings it on as it does so many others on here not just a night time thing as you read on a lot of site,
Didn't sleep a wink last night so tired this afternoon RLS hit me big time this afternoon where everything hurt like hell ,
I don't have Diabeties so don't think that has anything to do with what you feel not sure if you've read though all the blogs on this site you'll find out more if you do, Being restricted to one position drives me nuts i know that and as a blog i did ask if anyone has broken a leg or arm as that's my biggest fear ,
Do read everything on this site you'll learn a lot more as you do so it's a bloody good site to be on and one where we can freely babble on when your having a bad time of it and know that everyone understands what your feeling ,
sal
over the years ive done all sorts. till i found that prescription strength codeine (Discovered when my son had a shoulder op and i "borrowed" some) seems to knock me out and kills the rls symptoms, I used to take 3 paracetamol/codeine if i felt it coming on on a car journey or flight or somewhere I had to be still.
at night ive been known to;
clean and sort out cupboards
painting and decorating
cooking
intense yoga positions
lying on the floor with my legs up the wall
hot baths , cold baths , compresses
scratching hard
as soon a it gets light , walk the dog or go out on my bike, till i got knocked off by an lorry!! (no serious damage, except to the bike!!!...)
wish I could be so manic in the day!!!
The pramipexole has stopped the constant need to move my legs, arms etc, but I still sleep in fits and starts because of back pain, sciatica, muscle spasms and cramp,. I have started to take an extra dose of the above med, and take all my others too. (tramadol, diazepam.) If that does not work, I getup and do housework (the Quiet Kinds) and then brouse the internet, I then go off to bed and usually manage another hour or so, I really feel for you, good luck, caz.
I usualy get lifted by the Police for wandering around the local golf course in the wee small hours. Only joking but not too far from the truth; even in the worst of weathers I find myself going out for a walk which is ok for guys , but unfortunately not something most women would consider as safe.
I have listened to meditation Tapes and I have Learned a lot about Buddhism.
How do you all cope and what help do you get?
What can RLS sufferers do when they are no longer capable of walking at night?
not sure if I have RLS or just fidgety - what do you reckon
Just one glass=no sleep!
Can't sleep
