Hi guys, I'm hoping someone on here can help me, I started having RLS about 7 or 8 years ago, it was mild to begin with, I would have bouts that lasted for a few weeks at a time, then it would calm down and i would have a few weeks off, then it would start again. I was given Quinine Sulphate by my Doctor and this worked at first. Gradually over the years my RLS has got worse, I now have it every night and recently I've started having the symptoms during the day, It's only in my legs at the moment, I am on Roprinole which does work as long as I take it an hour before I sleep and it lasts for about 5 hours, but I still have to get up in the night and do leg stretching exercises.
One of the problems I have is side effects, the sickness and drowsiness. I work shifts as a Firefighter it's a sleeping shift, but I can't take the tablets at night as I would not be able to respond to "shouts" so I tend to walk around all night,
one thing that helps for me is sleeping with a very light duvet, or no duvet at all, in a cold room.
I don't know how everyone else feels, but I'm at my wits end, I haven't slept in the same bed as my wife for over a year, it's unfair on her to have me fidgeting around all night. I've never felt so depressed.
Does anyone know if there's likely to be a cure in the near future ? or if there are any effective treatments other than roprinole that don't have side effects ?
Any help would be greatly appreciated.
Rob.
Hi Rob, have you tried coconut water? I have about half a pint at lunchtime. Used to have a banana a day but it was a bit hitty missy, the coconut seems to have done the trick for me. June
Hi rob 58951. I started with RLS way back 45 yeRs ago when there was no name for it ,it. Went on an on until 4years ago when I it got so bad I never slept for weeks now on premipixole 1mid day and 2 ,3hours befor bed and no side effect I'm doing great now JoyceJoyce
Rob, I don't know if there is a cure imminent, but I doubt it as the doctors and healthcare proffessionals look at me as though I'm an alien when I describe my symptoms. I can empathise with you, I get depressed at times with it all. My legs start to judder and throw themselves about in the evening when I sit down and will carry on after bedtime it does'nt happen every night but there is no reason or warning when it will happen. I'm on Ropinerole but the only side effects are as descibed on the leaflet, want to gamble, smoke etc. Sorry I am of no help but at least it shows youre not the only one out there suffering
Thanks Joyce, I will speak to my Doctor about that. 
Thanks, I'll give it a go
I have had RLS since 1986. Symptoms have driven me to the extent that I couldn't visit friends in the evening because I couldn't sit still. I have had to get up and walk round in the middle of the night as I couldn't sleep, very tiring. Tried various remedies without success, but when on painkillers, after hip operations, symptoms disappeared even though I was very inactive and sitting down a lot. I have found that taking 2 x dihydrocodeine tablets about 6pm every night totally gets rid of any symptoms. If I forget to take the tablets the fidgety legs return, but disappear within 20 minutes after taking tablets. I cannot believe how well they work. I get them on prescription from my doctor. Very occasionally I get RLS in the afternoon if sitting still for a long time but I just get up and walk around for a while, as don't want to take anymore than 2 tablets per day. No side affects. Best of luck, RLS can affect your life so much!
Thanks Hazel, I know what you mean, I went to the pictures last night and had to leave after 40 mins. I'll ask my Doc about them. They sound good.
I found that 7 or 8 sessions of acupuncture worked. It didn't start working until after 10 visits for me, but it's been pretty good since. If not, I take tramadol, and I have found that even if I take it in the early evening, it does not cause drowsiness. Good luck.
Hi Rob, I feel for you. I've had it for about 30 years now. It has considerably gotten worse in the last couple of years. Mirapex worked for a long time and then quit. At the moment, my doctor is trying Methadone on me. Ropinerole worked too for a while. I can't go to movies or driving for a long time or anything anymore. I've been on the Methadone for 3 days now and have not seen any changes yet. I'm very hopeful. Dr. did a blood test on me and found my iron to be very low. They say that is one of the causes of RLS. Going in for iron IV's soon. It's a horrible illness. I wouldn't wish it on my worst enemy if I had any. It's so debilitating. I usually end up taking a couple of hot baths a night, which helps. I walk around a lot at night too until I fell down the stairs and broke my foot last year. Imagine having RLS in a cast!! Not fun. Good luck to you and please share if you find anything out there that works.
Ok everyone..I have been following these site for about 3 months and the symptoms all feel like mine plus additional waking up about 4 times to use the bathroom every night..it was hectic...last month I went to my Gynaecologist who listen attentively and said that it looks like all these symptoms atarted when I started Menoupause..it sounds true and she suggested a low dose Hormone Patch (Estrogen) My symptoms completely disappear after 1 week,,,,,I know that it was god who showed the Doctor what to do...I know Estrogen has its own side effect but my Doctor said she will start to reduce the dose after 3 months and also just added Provera to counteract the side effect of the Estrogen...I hope this helps someone
I use to suffer from RLS but now I rarely ever experience it. I'm not a medical professional - nor do I play one on TV - but for what's it worth - this is what has works for me . . .
Diet - low carb, high fat, medium protein. keto diet basiscally. I do not consume refined sugar. Well, very rarely and if I do, I try not to have it in the afternoon or evening.
Exercise: I walk a lot!
Supplements: A high quality magnesium supplement early evening
Homeopathic Remedy: Not needed most nights but if I have had sugar I use this remedy. _____
Stretch: I stretch out my calf muscles for 2 minutes each leg right before bed. This works really well. If I wake up in the night with restless legs, I just stretch and restless legs are gone!
I also take a tylenol if I feel RLS coming on. It seems to help even though there is no pain attached to my RLS. It just seems to control the restless feeling. Strange.
My quality of sleep is also substantially better if I refrain from TV or using any device for an hour before bed.
Good luck everyone!
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Hi Rob,
I hope you have found some relief since your last post 3 months ago. I suffered from RLS for years, and much like you I was at my wits end. I have only one kidney so the medications doctors wanted to put me on was not an option. I went to an acupuncturist who told me that in most cases, RLS is just a fancy word for "magnesium deficiency." Many people are magnesium deficient, although it is difficult to test for because our body does not store it for longer than 24 hours. He recommended I take a high quality Magnesium supplement, and if you are a tea drinker, you can drink Magnesium tea. I take Magnesium-Potasium Chelates by Krebs. I feel the difference immediately (within the hour) and I have not had a bout of RLS since (it has been 3 years). Sleep Minerals II is also great for taking before bed and there are some medical articles written on it for its effectiveness. However, I think you may find that you will get relief with just a really high quality magnesium supplement 250 mg - 500 mg, but make sure to ask your doctor to ensure that it will not interact with any other medications you may be on. To my knowledge, Magnesium is not known to interact with any medications and is completely safe.
Hi Rob, you sound like I feel!!Im on ropinirole as well, now on 3m like u I'm in spare room most of the time!! I get it in arms as well! I'm outside through the night trying to push feet into hard steps, driving me mad! I was at doc the other day and was told no cure! Getting blood done next week to check thyroid as I'm on meds for that!
i know how you feel!! I'm looking at clock waiting to take ripinirole, does help for a few hours!
Well, what works for me is tramadol. As one reader said, there's no pain attached to RLS but for some reason a painkiller (not NSAID) works. You can go to work even though you've taken it (try it first though). Cold water on the legs before bed works too. I found sleeping on my side or stomach, with feet hanging over the end of the bed, also works. There are some leg compression boots that inflate sequentially, and those work too but are cumbersome to put on and take off. You can get them from a medical supplier or look online. Wearing support hose during the day can help also.
Have you tried ice packs on your feet when going to bed.?I have had rls for most of my life, it runs in the family, I have taken sleeping tab Zolpidem for years. Have just had a knee replacement and the rls has gone through the roof! I find sugar, heat, and too much exercise make it worse. I feel for you, until you suffer from it it's impossible to explain. There are periods of remission so don't despair.
Hi rob did you not try premipixole,at first I didn't won't to take them but I could not go with out them now.4 weeks ago stayed at daughters and forgot to take them ,well I was up for about 5 hours so now carry them with me in case I'm late getting home as take them 3hours afor bed time,they have no side effect on me x
Hi Hazel ,tell me have you ever hurt you back ,just wondering as i did 47years ago and it was few years later that RLS started and you no that to visit any one is a no no,our lives are around this RLS and I'm feed up with that wish some one wound really look into it sorry just having a moan x
Hi Sioux I no that feeling I've had it since I was 31 now 73 yrs and life's not been easy that and 5 children and then doctors new nothing of this more or less said get on with it now can't do with out my premipixole x