No sleep again!

I'm new to the site but not to the pain in the backside that RLS is! I've had it since my early 20's and has not caused too much trouble up until about a year ago and significantly worse since April this year. I can probably count on 2 hands the number of complete nights of sleep I've had in this time span and it's beginning to have an impact. I'm beginning to get tired in the day and I will drop off after work if given half the chance, which is unheard of for me.

I'm usually affected down one side of the body, both arm and leg or just arm or leg. I have a general sense of restlessness that sees me rolling over and over! I generally get up and walk around and hope to get to sleep but this outcome has become less frequent. I'm now finding the walk Reprieve does not last and then I'm up again later and my sleep is poor and shallow. I'm now at a point where I'm getting angry that I can't sleep and almost dread going to bed.

Doc tested for all the obvious stuff - I'm a little anemic but they won't give me iron tablets (not bad enough). So currently it's after 2 in the morning, I've had little sleep since 10 pm and I've a full time job to go to in the morning! Somethings going to give at some point I fear!!

Not keen on take medicine but I'm getting a bit desperate, l used to sleep so well....

Any non Meds tips I may not have tried? I've tried quite a few!

18 Replies

  • Poor thing , altho I too have not slept a full night for years, you do have my sympathy, and I am retired so work is not a pressure. Firstly you do have to get your iron levels up. I know that for me it helped a lot. Also Magnesium in its many forms is good. Either as Epsom salts in the bath or tablets. There are people more expert than me on this site, so tell us what you have tried and we will all help. You are not alone

    And why have I been awake for hours ?? so early?? RLS !!

  • Hi , yes what a horrible thing rls is . Had a bad night but own fault I had couple of drinks which legs hate. You can buy a gentle iron from health shop but to be honest it's unlikely to help . In my opinion you need something like pramipexole but after 7 yrs on it I need to change meds. My gp isn't interested so I'm seeing a neurologist privately to avoid the long wait . In 25 yrs this is the 3rd time I've paid . Good luck but the drugs do help !

  • Sorry to read about you I have had the same trouble now I am on iron tablets and pramipexole they work really well all the best tony

  • I used to walk round reading till I was so tired then go to bed, that didn't always work. I have gone back to something I loved as a child. I get up and do some colouring; that way I find mind preoccupied it works most of the time. But other times it doesn't. You don't say if you are on medication. I went to my GPS armed with information from RLS website, I also researched the medication they suggest. When I went to my go I just said I had been looking into RLS &found this info. What do you think. I was lucky to have an understanding GPS. Good luck to you hope all goes well.


  • I am so sorry you have this terrible condition added to by yet another f**k-wit Dr.

    A little low in Iron is a lot bad for us - get Gentle Iron and take it at night on an empty stomach. People with RLS can show good Iron levels and still not store Iron in our brains there for cannot activate the Dopamine pathways properly or something like that!!!!

    Look into Magnesium too and maybe consider getting a Dr that knows what is going on and is able to do their job. You can get help from here:

    also if you are in the UK then look at NICE guidelines - you Dr should be working from these:

    There is a lot of info on those sites and on here. Arm yourself well with knowledge as you are facing an uphill struggle trying to educate Drs.

    Welcome adn Good luck and know there is good help and support here.

  • Jewell Militant I know just how you feel and it's B awful ,yes all the walking in and out of bed the pain in the legs then that effects the back,well I have had lots of meds and if you can have the Neupro patch have it I have that and Tramodol the patch helps rls and tram helps the pain it works well, magnesium baths are good to,I do wish you well because having to work all day must be bad, take some advice of this site and you will get help

  • Hello Militant,

    Your experiences sound very familiar to mine some years ago, so here is some advice:

    Pramipexole works well and quickly (within 2 days) for someone who has never taken any medicine for rls. There is a catch: if you have taken it for some years and it doesn't work any more it is very hard to stop taking it (withdrawl symptoms).

    Try to avoid isolation which often accompanies not well-known chronicle illnesses. Talk to your friends and family even to people at work about your condition. Some of them will understand your condition and support you.

    Try to find some kind acceptance of your rls. It is not easy and sometimes it is impossible, I know. You cannot get rid of rls, but often you can avoid the additional suffering of being angry or frustrated with your condition.

    To continue with non-medical advice: a lot of sufferers will confirm - but maybe not in public - that the relaxation that comes after sexual excitement really helps to fall asleep.

    As for as iron is concerned: try to have your ferritine level checked. My neurologist it should be above 50 ( in contrast to none-sufferers for whom >25 is enough).

    But maybe my most important advice would be: get support from your GP soon and often. You will need it for the rest of your life.

  • Agree with all above.

    If you take magnesium tablets make sure it's the citrate.

    Also check what other meds your may have taken ( antihistamine etc) and various food triggers ( rising agent and sulphites do a job on me!)

    Theres a good list in rlsuk

    Good luck.

  • hello, suggestion- try a very strong cup of tea, (at least 2 t bags)when goig to bed, and massage the soles of your 2 feet for about 2mins each, this has helped me a lot, very seldom do i have restless legs now.I have been doing this for about 3 weeks. let me know how you get on ? hope it works for you, as its a terrible thing. xx

  • Hi, I really feel for you understanding how you must be feeling. I too have suffered with RLS for years & until recently cannot remember a good nights sleep. Probably 2 or 3 hours would be a good night after taking Ropinerole, usually though although I was mentally & physically shattered I couldn't sleep whatever I tried.

    10 days ago my GP switched me to a basic dose of Pramipexol & as far as I am concerned it has been like a miracle. I take 1 tablet a couple of hours before bed - I have now had 10 good nights & importantly no RLS.

    I know there are side effects & this isn't a permanent cure but would recommend you talk to your GP & find out if this helps you.

    Hope this helps.

  • Welcome to the fold Militant.

    You definitely have my sympathy along with a the other people on this site. I "love" the way your Doc goes ahead to test for problems and when finding one (your low iron) that he doesn't provide the treatment because it's "not bad enough!" How "bad" has it got to be to merit receiving treatment?!? Does he/she/they have any trouble with their sleep, I bet not.

    Like Funnyfennel said, give us a list of anything you have tried. There are people on this site who deserve the highest clinical awards judging by their knowledge and I'm sure between them they can help you. Also, do you record when you have "turns". If not, it might be beneficial to do so. When I was turned away by my GP she said, "Go and try non-prescription treatments as all I can offer you is Anti-Parkinson drugs". She obviously wanted to save money. I think your Doc might have been trying to do some cash-saving.

    Feeling completely at a loss I started experimenting to see what might help. A lot of things helped temporarily, but eventually lost their effect, but the one that's helped the longest (about 10 years, still working) is a mattress topper that cools the bed all night. I take it when ever I travel. Unfortunately, mine RLS occurs at times during the day and they haven't made a more portable version of the topper. Later after no other luck I took a record of my turns to the GP, was pleased to find that the previous doc had left and the new one I saw had the presence of mind to say that he knew nothing about RLS and because of that he was going to refer me to a specialist neurologist. I'd showed him the records of my turns and he agreed that it was "a problem". The neurologist I saw told me to kepp recording the turns as she found it very useful when checking how the medicines were working.

    I've kept records religiously ever since!

    Try some simple things like putting your legs out the bed to see if they ease off when cooler. But provide the info Funnyfennel suggested and I'm sure you'll get some useful help.


    P.S. sorry I've rabbitted on for so long!

  • I would consider taking iron for my rls, but Iv`e read that too much is toxic.

  • I would recommend asking your doctor for a ferritin level test to see if your level is low before starting any iron pills. As you are correct, too much iron can be dangerous.

  • I just recently started taking 600 mg of Gabapentin at about 9:30 pm. I don't fall asleep til about 1:00 am but then I sleep solid the rest of the night.

  • My gp also put me on Vitron C (iron but easier on the stomach.) My ferritin level was 85 but she wants it at least 100.)

  • I totally sympathize as was the same for 30 yrs but a few months ago I strated taking a very high doses magnesium 1600mg every nite and I sleep like a baby. My legs used to be vertical in the nite and I wld thrash around like a washing machine. A high doses does get my system going in the morning but it's worth it for me.

  • Thank you all for your replies I think I will look at taking some iron supplements and see how I go!

  • I agree with Raffs try the Gentle Iron on an empty stomach before bed. Works for me!

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