RLS (restless leg syndrome)

Has anyone experienced this - or is perhaps suffering from this?

I am desperate for a good nights' sleep that I would try anything! (don't know how I would manage this but if standing on my head would stop this I would even give that a try if I thought it would work!!!!!!!!!!!!

Any suggestions would be greatfully received - Irene x

19 Replies

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  • Hiya- I get this and find that if I take paracetamol when u feel it start to come on it really helps. Also I went to the states recently and got something called restful legs which is a homeopathic remedy which is also quite good- I've not seen anything like it in the uk though.

  • Hi - will try and look into some alternative methods for trying to end this torture. Have never considered it before but will try anything!

  • Hi

    I used to get this and it I know it drives you bonkers!

    Since hydoxychloroquine I do not get it but I used to walk up and down the stairs and...........if you can have nookie that really helps!!! I think it is to do with circulation!

  • Hi

    I am on hydroxy. and have been for quite a while. The nookie is certainly a novel idea. Must mention this to my husband - or maybe not!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  • I also had RLS for years leading up to developing lupus. I rarely get it now, i think it is probably due to hydroxychloroquine as jomul said. When i do get now, i get up and have a cup of tea, that seems to relax them.

  • Hi

    I am on hydroxy. and have been for quite a while. Some one told me to start taking de-caf tea and see if this helps. Am willing to try anything!

  • Hi Melinda - I too find that getting up and having a cup of tea helps - plus a biscuit and a couple of tablets, a read of a good book and then back to bed again - I don't get it so much since I've been taking ametryptaline for painful legs at night - but still the odd ones - lesaliblue

  • Hi

    Yes I end up going downstairs and trying to relax - you would not believe the amount of rubbish tv I have watched!

    Afraid long term use of amitryptaline has ended up making my pancreas shrink and now have chronic pancreatitis

    .

  • hi Irene, I take ametryptaline to and it helps me, plus putting a pillow under my knees helped. my Mum used to get RLS and she found tonic water helped as long as it had quinine in it!! I hope you get some sleep soon. x

  • Hi

    I can't take ametryptaline as long term usage has given me chronic pancreatitis.

    Have been trying the pillow under the legs and willl try the tonic water as well. Thanks for the help :-)

  • Hi, I take Ametryptaline but still get it. Somebody suggested raising my legs so I put them on a few pillows. WOW it helped that much that in the end after my legs falling off the pillows and trying to get comfortable etc we invested in an electric raiser bed. Well its perfect, it also helps my back and hips when they are bad. If im ill and need to sleep slightly raised It does that as well. It also makes days spent in bed much more comfortable.

    They are not cheap and due to our finances we were able to get a couple of grants to assist us in the purchase.

    Hope this helps and best wishes

    Helen

  • Hi

    Your bed sounds great but unfortunately we cannot afford it but the raising of the legs is a good idea. Someone on the site has already mentioned this helped so am giving it a try.

    Thanks for answering my plea for help :-)

  • Hi

    Both my husband & my motherinlaw suffers from

    RLS & they both swear drinking

    bitter lemon works for them.

    I must say that it does work because

    he dont kick me like a horse anymore lol

  • Hi

    Not keen on the taste of lemon juice but like I have said will try anything. Asda here I come!

    thanks :-)

  • What is restless leg syndrome

  • Hi, if you get some hard pillows and pile them up with a couple of soft ones on top.

    I don't know what your finances are but you could try getting a few grants to help with the cost of a bed. If you go on the turn2us website then the grant application form then on the A-Z list. I know its tedious but I went through it page by page and just phone or e-mailed everybody to see if they could help us. Some people do depend on finances but others just go on medical need etc.

    Hope it helps

    Helen

  • I use codeine phosphate 30mg (one or two tablets) combined with half a clonazepam. Also paracetamol (tylenol) for when the pain is very bad. I was diagnosed ten years ago through an overnight sleep study; I have Restless Legs and Periodic Limb Movement Disorder. So the first makes it hard to fall asleep and the other wakes me after I do! The meds have dramatically improved my sleep and thus my waking life as well.

  • Thanks for the reply

    . Had not imagined this caused so much distress to so many other people. Have never mentioned this to doc before as it was always infrequent and did'nt want to mention yet another thing to him but think I will have to now. If I do'nt get a decent nights' sleep soon I am going to scream

    Will certainly mention your drug management for this and hopefully will get some help from him.

    Irene x

    ps. Have never heard of Periodic Limb Movement Disorder! What is it?

  • hi Irene

    I had the worse night of my life with RLS last night so bad in fact that I ended up crying in pain and wishing I could hack my legs off it is so severe at times that I really do not know what to do for the best getting up and moving doesn't help but I have just seen an article about gastrocnemius stretches which I am going to try... I would try anything to stop the pain and get a few hours sleep

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