'RLS won't stop me doing things'

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Living with restless legs syndrome

Living with restless legs syndrome

Having restless legs syndrome is exhausting, and can be quite embarrassing. The other day, the whole family met up for my brother's 50th birthday. But while everyone else was sitting down, I spent half of the afternoon and evening pacing round. It's the only way to control the pain and spasms I get when I sit still for too long.

I first noticed my RLS when I was a teenager. I had to stay standing on train journeys into London, because sitting down for so long was agony. Some people only get the pain and the restless feelings in their legs, but I also get them in my tummy. It's almost like labour, the feeling that you should be moving.

I didn't bother going to the doctor, especially as my mum had always been the same. In our house, the poor cat never had a lap to sit on! But as the years went by, the feelings got worse. I was finally diagnosed in 2002 by Dr Chaudhuri, a specialist in restless legs syndrome. I actually wept when he said he could help me.

Since then, I've tried a variety of drugs. They've helped a bit, but I still can't stay motionless for long. It makes things other people take for granted almost impossible sometimes, like going to the theatre or on long car journeys.

But I'm determined not to let RLS beat me. When I go to the theatre, I always book an aisle seat. I even flew to New York a couple of years back. I just made sure I was sitting at the back of the plane, and that I walked about as much as possible for seven hours.
Bev Finn, 58, Medway, Kent

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glad to have found this thread-my hubby has suffered with rls for years now and there is no help from dr's-just amytriptyline to aid sleeping ( which sometimes doesnt even work, even when he takes 2 ). He is up a lot of nights, beating his legs, or me massaging them-its a bloody nightmare-if he could cut them off he would. I will try these links posted, Thankyou

Donna McLellan

I have been reading the comments on here, and most of them are old, but I certainly hope some of you have gotten the help you need. I have severe RLS. On a mild night a hot bath might help, but on the nights when your whole body is bouncing around and the thought of chopping off your legs seems like a great solution, a hot bath does not help it at all. I can't even sit in the tub. I manage several support groups, and we are definitely not alone. My online support groups can be found listed on, the RLS Foundation's web site, as well as several others. Combined, there are about 1500 members, so we havev a lot of support.

gillian edwards

I also have suffer from RLS and have done since my youth.But I became Diabetic 5 years ago and since then it has got worse. It is every day and night of my life,I can,t go to the theatre or long journey,s in cars or any transport. I have a marvellous G.P who has helped me a lot.Tablets are not without side effects but at the moment I am on Mirapexin 0-088mg I started with 1 tablet which was slowly increased to help releive my symptoms and now I have reached 5 nightly the maximum dose is 6 tablets I hope I don,t have to get to that point. It,s the only one that I have not had side effects from. I am also suffering badly from lower back pain.Another thing I do is rub a Boots intensive foot care product into my feet and all the way up to my knees I do it every morning and always at night and sometimes during the night if needs be it costs &#194&#1632.99 for 150g but I think it,s worth it. Try it.,it might help you too. I,m not saying you will be cured but these are the things that give me some releif and anything is better than nothing. I,ve even felt suicidlal where mine has been so bad and so exhausted through lack of sleep. I still can,t sit for very long but I am much better in myself than I was and that has to account for something.. hope I have helped a little..... best of luck!


I have suffered for many years and still do with Restless Legs. I work full time nights at my local hospital and being on a very busy ward i don't sit down all night. When i do get a dinner break i often spend it walking up and down in the staff room.My legs and lower back drive me mad and this is everyday and night. I go home in the morning and I'm lucky if i get 2hrs sleep and there are many times when i don't get any. I have to take tablets for High Blood Pressure and a Thyroid condition and for my RLS i take Dihydrocodeine and Ropinirole. This gives me a few hrs relieve but out of 24 that's not much. I have tried Amitriptyline but that made my legs worst. My life is one long nightmare, I feel like screaming when people tell me to try sitting down and relax. They just don't understand and that also goes for most Doctors. If anyone out there can help please let me know. Thanks.Susie.


I have RLS as well and it won't stop for anything! One thing for sure is to do away with soda's and caffine. That only adds to it obviously. I eat things like banana's in the evening. I've done hot cocoa at night too, for some reason that helps me when I wake up in the middle of the night miserable. It has also caused some severe leg aches below the knees. Has anyone else experienced this. It feels like the bone (tibia) is being stretched out. At this point the only thing helping me is tyleol pm right now!


My partner suffers from RLS and he has started having Nytol a few hours before going to bed, he will only have it 2 or 3 times a week so he can catch up on his sleep, but it really makes a big difference.


cost u nothing take a hot bath before bedtime it has worked for me for many years now for rls syndrome good luck mags scotland


I recommend you try EFT - Emotional Freedom Technique. I am sure it will help you. It is a simple tapping method that can help you unlock symptoms, feelings and fears. Elements are used by Paul Mckenna, it is not hypnosis and is easy to learn, Once you have learnt it you can use it for all sorts of illnesses, stress and pain relief. It has made great breakthoughs in helping MS sufferers, injury recovery and phobic difficulties. Do a web search - you won't regret it. Good luck


Hi Carol, Just wanted to share that I too suffer from RLS occasionally and I feel that taking nutritional supplements like Zinc, Magnesium and Iron help me a lot.Even milk lessens it.So do try this.

Mavis Thurley

My husband has suffered from RLS for many years and has tried several remedies, none of which helped. Recently, I started to get it as well but only when sitting up reading in bed. (A new bed with memory foam topping). I find that if I lie on my side the RLS goes away, so I suspect that it is pressure on my upper thigh/buttocks which is causing it. Can this really be RLS?


Hello, I have got restless legs syndrome too, and it started as night cramps in my legs, but then they started to burn up and kick, the feeling like something is crawling up your leg is unbareable. I then went to my gp who referred me to a specialist who then said that it wasnt night cramps but RLS, but as there is no cure for it at present, he put me on various treatments, but the side effects were more than the benefits of the drugs. So he took me off them (Cabergoline/Dostinex, as was on the restlesslegs website,), There is an issue with the treatment, as I have Thallassemia (blood disorder), and it says that this tablets for RLS, can affect the Feritum Serium, (which is what my Thalassemia gets checked on), it says to take Iron tablets, but again I cannot do this, too often due to the Thal... I wish they could find a tablet that has minimal side effects, and that will help me, get a good night sleep, and be able to sit longer in the daytime. instead of on my feet all day, which is giving me pains in the lower back because I am standing all the time. In the night I have kicked my partner so many times, that he is bruised, as the leg just jerks uncontrollably, and it wants me to move it, but my partner has massaged my lower legs/calves loads of times, but in the end I have to get up do some stretches and walk about, then get back to bed, but after a short while it is back... Please can anyone suggest anything, so that I can get on with my day to days and sleep at night more. thanks

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