So glad to have found this forum! - Restless Legs Syn...

Restless Legs Syndrome

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So glad to have found this forum!

clearstream profile image
19 Replies

It is 02h03 here in Norfolk, UK. I have been sitting in front of my pc since I left my bed at 23h30. I can't move my legs around too much in bed as it wakes my husband up and he needs his sleep. So I slide out of bed, creep downstairs, watch TV, go for a walk in the garden, go upstairs, go downstairs, surf around on the internet, EVERY night! I seldom manage more than 3 hours sleep; its been like this for nearly a year now. Sometimes I just collapse from exhaustion during the day. I was prescribed sleeping pills by my doctor but though they worked for a few nights, it didn't last, doctor told me to double the dose, but I refused. Was I wrong? Possibly. I am rambling on and on here. Sorry. Just want to go to sleep, but I can't.

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clearstream profile image
clearstream
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19 Replies
LeahK profile image
LeahK

I know the feeling. Im here in bristol at 0220am. I have to be up at 6 for work. Dont think im going to sleep at all tonite. Jumping around the.place too much nd itching constantly. Im watching rubbish late nite tv nd surfing the internet on my mobile. My poor mate has had to go to bed as she has broken her wrist nd needs sleep! Really getting depressed by this :-(

Rish profile image
Rish

You both need to see your doctors and get some medication to help you, if you both have RLS then there is a lot of information on here about the drugs that can help but what works for one does not work for another!

I am on my 3rd different medication and I find the neupro patch works for me so I do get sleep after all these years of an odd hour here and there! Please get as much information as you can and see your gp as there is nothing worse than suffering and getting no sleep! :-) don't give up!

Marisa-35 from Cumbria uk.

connie50 profile image
connie50 in reply toRish

hello rish I have had RLS know for nearly 15yrs & it make's no difference what you are taking, I have tried everything,& I mean everything going, in fact I could open a chemist shop (pharmacy) with all the stuff I have tried, but after a couple of wks. may be less it stops working the medication that is, I can take my meds (had to wean of D/A got augmentation) Tramadol for the pain about 10.0 o'clock at night go to bed because I'm so tired but after about an 1hr or so my RLS kicks in so I have to get up.(this as been going on for mths or so)come down stairs watch a bit of telly then go back to bed, fall asleep, but the next day I'm so sleepy all I want to do is sleep. Know this is not normal to me. I have tried everything going but until know I just cannot find the right med .Like I have said its just finding the right combination of drugs to suit you.X CONNIE50

cefndaniel profile image
cefndaniel

Leahk You said you were itching, are you Diabetic and if so do you take metaformin as that made me itch like the devil? Just a thought. You both need to see your GP and get some medication as Rish says. A lot of GP's do not understand RLS and if yours is one of them ask if you can visit again and bring some info from the net with you.

in reply tocefndaniel

i always know im in for a bad night when i go to bed first sign is itching all over ... not sure why but bloody annoying wonder if anyone else gets that too...

in reply tocefndaniel

Diabetic and liver problems sometimes announce themselves by

itching..maybe and probably it's not either..Itching is not any good.

in reply to

tell me bout it lol drive you nuts itching but no reason for it liver fine and sugar level fine i always just thought it was a sign that i was in for a bad night usually just settling down and feeling relaxed then you get an itch then another .... then another .... wonder if anyone else gets it ,

just gone 2am didn't sleep last night ... been on feet all day tonight nothing but going off my tree one them nights it hurts ...

sal

LeahK profile image
LeahK

Hiya, I am already on a 2mg dose of.ropinirole every night. Some nights it works nd othera it doesn't. My gp doesn't understand RLS. Im not diabetic so im not on any meds thqt would make me itchy. Its just part of my RLS xx

Krappie profile image
Krappie

This sounds like EXACTLY my story for 28 odd years. Tried EVERYTHING in the book. Most work for a day or mostly a week or two, the you have to up the dose. PLEASE read my posting under the heading THERE IS HOPE. Posted a week or two ago. I am in heaven. Have been sleeping through the last 10 weeks.

Good luck. Please let me know how it works for you.

Jan Theunissen (Potchefstroom, South Africa). e:mail: econo@telkomsa.net

eileen49 profile image
eileen49

take Ropinorole in half tablet doses throughout the night as they work for a few hours then cause insomnia.

There are other meds available, if the one you are on isnt working so good. Its no good keep taking the same one and not sleeping. But i will say RLS meds. are not 100% proof and we all seem to get bad nights. Its when the odd bad night becomes regular that usually a different med is needed. If anyone has a doctor who doesnt understand RLS, either take info along with you, what meds can be used etc...or if in the UK, ask to see a different doctor in your doctors surgery, you might have better luck.

clearstream profile image
clearstream

Thanks to all of you! Last night I finally got to sleep about 04.30, and was up and dressed again at 07h00.......so a pretty typical 'night' for me. I have taken all your advice on-board and will be contacting my doctor today armed with some good information.

The sleeping pills I was prescribed were not for my RLS but to help me sleep when I was going through post traumatic stress (that's finished now, -the ptsd) and it only worked for a little while without me upping the dosage. I didn't tell my doc then about the RLS because I thought it was, well, secondary to the ptsd. Thanks again to all of you. I'll let you know what my doc (when I can get an appointment that is!!) does for me. Rish, the neupro patch sounds very interesting, I'll do more research on that. Krappie, I'm off to read your THERE IS HOPE. I'm beginning to believe there might be :)

thedragon profile image
thedragon

I have the problem that even if I have a rare rls free night I still can't get to sleep waiting for it to start. I think I have lost the sleep switch. Can't seem to sort of click over into sleep. So I'm awake all night. I've tried loads of relaxation techniques to no avail.

in reply tothedragon

If you find that switch, let me know. I'm looking for mine too. <3 haha.

clearstream profile image
clearstream

thedragon! I have the same problem, I sort of wait expectantly for it to start, and of course it always does. I wonder if there is a mind switch technique (apart from relaxation ones) that would help us?

Not a good idea waiting for it to happen, we know it probably will, but try to use distractions rather then lay there waiting.

Try this website, i have posted it before and i dont know if anyone has looked or not. You will find lots of coping technics and distractions to do. rlsrebel.com better than just laying waiting for the RLS to arrive. You never know something you try might just help you.

clearstream profile image
clearstream in reply to

Thanks Elisse......I had a look at your website, -very interesting indeed. I will be making good use of it.

thedragon profile image
thedragon in reply to

I can't get onto that site....I go to the main page and nothing loads. It may be a phone internet thing. I've tried and tried .

!!!! it says 1 comment on here and theres a stream of them

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