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Restless Legs Syndrome
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RLS

Hi...newbie!

I have RLS (Bad). Arms, Legs, Shoulders/

I had a bad episode a few days ago, had really severe "ache" in my right arm, stretched etc to do the right thing, and did t so badly, I damaged muscles in my arm!! Ouch!

Anyone else been/done similar?

37 Replies
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Hi Darcy

Welcome to the forum. I am sorry to read that you have a painful arm now as a result of stretching too much. :( So far the demons only attack my legs and I am one of the very lucky ones as I get long breaks of no symptoms or hardly any.

I see that you love coffee. :) Some people with RLS cannot drink it because it affects their RLS so much. Dare I ask, although you say coffee makes you a nice person, have you ever thought of giving it up to see if it made any difference? ;)

Kaarina :)

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Hi Kaarina,

I'm lucky, I do not have any reaction to coffee, it's chocolate that gives me the problems! I get episodes around twice a month, I've been taking Ropinorol, and Mirapexin daily, it does seem to help but not a lot, I'm on quite a high dosage and I don't want take more just yet, as I don't want it to kick back on me.

The episode of stretching quite surprised me as I was half awake at the time, the onset of my RLS is roughly about 15-20 minutes after going to bed.

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Hi and welcome

I'm like you having RLS in both arms and legs but suffer with it 24/7 , i took Ropinorol for couple month not that it did anything after 5 days :( seems quite a few of us become immune to what ever pills they give us after a short period of time ,

Like you seems soon you start relaxing your off on the stretching and moving business rather annoying when all you want to do is sleep or watch a movie but not just to you but them around you too ,

would be nice if we could all find out what triggers it off but seems everyone is different i actually found sea salt makes mine a whole lot worst thinking sea salt would be better health wise lol i'm sure there's lots of other things that triggers it off ,

Funny you say chocolate gives you problems as i've been told chocolate should help ( not keen on the stuff myself) not sure why it suppose to help ,

sal x :)

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Hi Gypsy,

Nobody knows what triggers it. It's defo a Neural thing. The drugs we all take are also for Parkinson's, so I would have thought that maybe there is a commonality there.

When I feel the symptoms coming on, I just get out of bed, take 0.008m of Mirapexin and that usually works, on top of the Ropinorol & Mirapexin I have taked about 2hrs before;-)

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I have PD and have always thought my problem was PD.

Now I am wondering if I have both.

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Hi, people who have PD can also develope RLS. so maybe you have both.

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Hi Darcy

i know no one knows what triggers it off or we'd all be able to sleep lol yeah seems to be a link with Parkinson's bit no one knows for sure ,

i don't take anything now and so have to suffer with it have tried everything to try although weed (not that it works for everyone) did seem to be the best thing that worked for me even Dr said to use if it works but like everything else didn't last long before it stopped working didn't make me high just made me sleep best sleep ever with no side effect ,

can't say when RLS comes on as it's there all the time just worst at times than other even now getting the urge to move while typing ggrrrr ,gotta move....

wishing you a peaceful evening

sal

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Hi again Gypsy,

Forgot weed, that works as well!

I think everyone has their own way way of dealing (or not) with it.

If it works for you...fine. The only problem you face, no matter what the amount is, eventually the dosage or the amount of weed, ceases to work properly, and then you have to up the intake. That's the same with all medications, whatever the problem. Vicious Circle eh!?

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Hi! I wanted to post something along the lines of smoking weed helping bit wasn't willing to "throw myself to the dogs so to speak" because of its illegality. My Rls occurs when I'm tired and trying to relax. I love coffee also but only drink it in the mornings on days off now otherwise it really affects me. I've found that different types of weed help - there are two varieties of it as such, one is sativa which gives you the giggly high and a head stoned effect which is not good, the other is known as an indica which is more of a muscle relaxant and gives you that body stoned effect where you just want to sit or lay down. This is the one that has the desired effects of calming my limbs, I have found this to help no end but being able to buy it is hit and miss as you never know what ur getting until you smoke it ( unless you know where its come from - Amsterdam is handy as the coffee shops label it up well).

Just my 2cents. Tttt

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Not wrong there tttt!

Indica is the best as you say, it produces a 'body stoned effect' as you have concisley stated.

Supply can be problem, but , best left at that.

Needless to say, I had no probs with RLS when I lived on the Continent. Lol!!

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Hi again ..Darcy and hi tttt

your right about it being a vicious circle and as you said tttt hit and miss with the weed i've always said mother nature put it in this earth for a reason that being us to use lol never made me high just makes me sleep as said before with no after effect like some pills the Dr's give,

As you said Darcy getting the right dosage can be a hit ,miss thing too as with any meds just a shame it's illegal although i heard at one time they were going to make it into tablet form but that again will be mixed with man-made stuff that no doubt would give side effect hmm... ,

same as you tttt im at my worst when tired although i live with RLS 24/7 but comes with pain when tired :( not nice ,

I did notice no one had mentioned weed yet i have a feeling most had most probs tried it but darn't mention it lol ,

hope you both got some sleep last night as for me finally nodded off at 6am up at 8 still couple hours better than nothing ,

sal :)

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Hi again Gypsy,

One day they will put it in tablet form, there is a lot of research being done, and I believe testing is in progress. My Doc says he has read lots of cases, and many of the younger, and those that were born in the late 1940's use weed, If you were born in that time, you were there in the 1960's!!!!!!!!! Yaaaaaay!..Those were the days. I've given my age away now , who cares!

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There is a pill form called Marinol in the US anyway. LOTS of people use it at the pain clinic I go to. Plus, in the US, 17 states have medical marijuana laws, with about 18 more states with the upcoming vote on the books. I am a child of the 60's, and I will say it helped me, even when I did not know what I had or why I was going nuts as a teenager with my legs. I live in a medcial MJ state, and the laws differ from state to state, and then you have to deal with the Federal government. State and federal need to get together, and all will be peaceful. :o)

I almost think I remember that they have Marinol in Holland, so maybe it is in the UK?

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Hi Darcy

it's ok them putting it in tablet form but it's what they'll mix with it that'll be the question when there's no need for anything to be added ,

Just gone 5.30am and i've not slept again........... :( 3 nights a week no sleep sometimes more then i'll be lucky get couple hours sleep on the other nights ggrrr no win game get over tired makes things worst lol ,

i was born in the 60's so missed out on all the free movement lol your one the lucky ones ,

hope you slept well :)

sal :)

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Had a bad episode last night, started in my legs just after I went to sleep, so got up, walked around a bit, then the arms started, really painful this time, so took some more meds, then dropped off 'round 0045. Woke again at 3am, and that was it, the full jerky, twitchy, stretchy, thing. No sleep after that. That's the worst I've had it for ages..........I'm dropping off as I do this, but my legs kick off straight away. Oh well......C'est La Vie!!

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Hi everyone, smoking weed, or admitting to it, i dont see as a problem. I will admit to trying it myself a couple of years ago., being such a good girl.(i am 65 in a couple of weeks) and altho the 60's was my era i had very strict parents so the 60's or some parts of it bypassed me... So when i tried weed i felt very naughty, after all i was and am so against illegal drugs. But, i was willing to try it, if it had helped i would have probably still be trying it. But, it didnt, and after 3-4 nights of puffing, i felt ill one morning..Couldnt tell you what one i used, as i am completely niave on this...so i didnt try anymore.

In the States, alot of individual states now have medical weed, and its legal to use. Maybe moving over there to get your fix, legally, might be the answer...LOL... :)

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Hi Darcy and Hi Elisse

sorry to hear you had a bad night too Darcy :( i didn't sleep a wink last night and no doubt be a crap one tonight as tiredness makes things worst gggrrrr ,

like you trying to keeps eyes open while typing but damn legs going you tried texting on a mobile when your like that lmao omg hard work or what lol end up deleting half what you've put and starting again lol,

bloody awful really up all night no sooner sitting down your off again brains knackered eyes sore but the damn legs and arms on full alert hmm.

hope you get some sleep tonight Darcy :) and it be a peaceful one ,.. ,

I don't see it a problem admitting to trying/using weed and certainly wouldn't call it a drug as with most plants a weed is only something someone doesn't want to grow in there're garden lol as said mother nature put it on this earth for a reason to help folk like ourselves and them that suffer MS,folk with cancer on Cemo ,

It's legal in some states in the US but only to folk with Cancer so im told which is a good thing leaste it's been reconised to be of some help just wish they'd see it helps others too,

like you i've tried all sorts of pills from dr's with having RLS 24/7 either don't work or work for short periods of time someone offered me weed and wow slept best night sleep in years.........

sal X :)

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Medical weed, is actually legal for people to use for chronic back pain, in some states in the US. I saw a programme in the UK, where people were going to their doctor, saying their had really bad back pain, getting a prescription from the doctor then off to certain shops where they were allowed to sit and use the weed, sort of coffee shops. LOL.

But i know someone who lives in the States and she and her doctor has discussed using it for her chronic back pain and she has RLS so would take care of both...

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Think them special coffee shops you'll find to be in Amsterdam not in the UK i know one guy tried opening a coffee shop in the UK and had it raided and closed,

know they're allowed to use weed in some parts of the US as part of treatment for many different ailments usually for chronic pains just a shame they don't allow it here at this moment , ,

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Hi Gypsy63, i should have explained better on my comment, I meant they had those coffee shops in the States not in the UK... The tv programme in the UK was about the use of weed in the States...

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My husband has the tablet form of cannabis for his MS and other problems. I've tried it and it did work for the RLS but obviously they regulate what he has very carefully so he's only been able to spare me an odd one here and there. I found even after a few uses it became ineffective but maybe that's just me. Was quite nice though!! I certainly won't be going to the Dr to ask for it as a treatment for the RLS. I'll stick with my Clonazepam.

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Hi Gypsy & Elisse,

Sorry to hear you had a bad night as well Gypsy, vicious circle innit?!

I have absolutely no problems with using weed, using it in your'e own home is not illegal. Took years to get to that stage.

I'm just hoping tonight is a bit better, it usually is after an episode like last night.

I might just take a little bit more Mirapexin and hope that does the trick.

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Hiya Darcy :)

aye was bad night and night before looks like tonight going to be one if i don't stop trying to dance on the ceiling lol ,

I thought they changed the law again with weed someone told me as i don't watch news ,

your lucky if i have a bad night tiredness makes me worst too heyho........life goes on lol,

really hope you get some sleep , I've tried Mirapexin didn't work for me :(

sal :)

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Actually...not too bad a night, no sleep, but constant dull ache, took some knockout Dyhydrocodeine, spent most of the night on the sofa reading.

Just felt spaced out!

Did you have a bad night again Gypsy?

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eh! you had not to bad a night but no sleep does that make sense ? lol

used to love reading myself ... but can't get through a page without getting the wiggles so gave up ...

my night was a restless one did manage couple hours woke up soaked for some reason and bed upside down more or less so couple hours dancing by looks of it lol

how do you relax ? what is Dyhydrocodeine ?

guess i could look it up really

sal :)

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hi GYPSY ITS A STONG CODIENE BASED PAINKILLER

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thank you :o) was meant to go do a search but forgot lol ...

wonder if anyone broke a leg before and how they coped with RLS one my biggest fears would be to break a leg :( or arm for that matter,

sal

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hi Gypsy, i wonder myself..lol, ive now got arthritus in my hands and feet,i used to hold on the back of a high back chair when my legs were playing up, but have to be carefull of that now, my hands are so sore at times,and jigging from one foot to another, certainly doesnt help the pains in my feet, but we struggle on and try to smile :)

jean

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im guessing they'd have to sedate us can't imagine braking a leg or arm and not being able to move ,

think i have arthritus in my feet keep saying it's like my shock Absorbers have gone lol but like you say life goes on and got to get on with it won't let this thing beat us

:)

sal

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opss did see a video on youtube of a woman in a coma with RLS couldn't believe it her legs were still at it even though in coma ,

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well i ruptured my achilles tendon 2 years ago, and i had a plaster cast on, not funny .. not funny at all, just about the worse thing !!!

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ouchy........... can't imagine what it must have felt like think i'd have to be knocked out till it mended lol

just posted a blog (i think) asking if anyone broken a limb and how they coped ,

sal :)

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I have just had a thought!:D

in 1984 I had a major Op. I can remember after coming out of the ICU after 3 weeks. The Physio had to come and see me as my legs and arms were so restless. That must have been the start of my RLS.

Does anyone else have a similar experience?

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I have had major surgery, had many of them when i was a child.

But i never had RLS back then, although i did inherit my RLS from my father.

But i do know some people who have had back trauma seem to say that is when their RLS started..

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When going to a website which says it can cure restless legs syndrome, please remember most of these sites want you to pay alot of money for you to buy their product to "cure" your RLS.. There are many many of these type of "cure" sites on the internet...so they cant all have the "cure" for RLS. Also alot of natural remedies where you take a herbal supplement you must be careful, herbal supplements can cause as many side effects as the prescription meds. If you intend to try a herbal remedy do research on it first or come to that any remedy that you decide to try...

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I do not, nor have I ever had a sleep disorder, unless you call RLS waking you up at daft 'o Clock daily, I say Daily!!

I disgree entirely with the preposition that RLS relates closely to some sleep disorders. Sleep disorders in the main are due to an upset of the Circadian Rhythm, which is not neural, but more Glandular.

Neither are the remedies for both similar.

Does your doc prescribe Mirapexin, Ropinerol, for sleep disorder?

Does he prescribe, Tramadol, Diazepam for RLS?

Beware of making ubsubstantiated comments, unless of course you are a medic!

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I am on Neupro patches which work 24/7 and as a top up sometimes I take a Ropinorole late at night but I dont like them cos of side effects the next day but patches are very good

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