Another possible cause?

Hi everyone, I'm new here but was interested in what you had to say about RLS. I've had this on and off for a number of years and know how frustrating and tiring it is. YOU might want to sleep but your legs or whatever part is problematic, seem to have other ideas. My symptoms manifested as an overwhelming and irresistible urge to move my legs. It generally occurred in the evening or after going to bed. And the more I moved when sitting or lying down the worse it got (a bit like the itch-scratch cycle) until I just couldn't stop moving. It was physically exhausting and, needless to say, drives both you and the person you share a bed with crazy. The only relief was to get up and walk, to bear weight on the offending limbs, but it provided only temporary respite and started up again as soon as the weight-bearing ceased. While in bed I tried lying on my front with legs pressed firmly to the mattress which sometimes worked long enough to let me fall asleep, but over time I gradually recognised a pattern. An 'attack' usually coincided with overtiredness. These days, when I get those first telltale twinges, I know it's time I went to sleep which, nine times out of ten works, providing I respond straight away. It's now quite rare for me to suffer with this maddening affliction. This is just my experience, but if it helps someone else, great!

10 Replies

  • Welcome LinnieB, good to have you with us.

    I'm so happy that you have found a way of dealing with this, however my RLS has become so extreme that once I feel that first twitch, well I reach for more meds! I have no option as nothing at all will help. No matter how tired I am, and believe me I'm beyond tired, it is pointless trying to sleep. I find that the moment my mind is not "busy and distracted" the RLS kicks in day or night with a vengeance (please excuse the pun)!

    At the moment I take Ropinirole, and Tramadol. But also supplement with zinc and magnesium. Sometimes they work to a degree, other times they forget what their role in my life is!!!

    It's good to hear about everyone else's experience's as we all have something to offer each other. I hope you can keep controlling your attacks and you don't need to succumb to the meds, they can't be good for the old body!

    I will take a leaf out of your book and hit the sack as soon as I feel a twitch, but I am so paranoid about trying to sleep, that I often don't even bother trying!

    Keep in touch and let us know how you are doing, good to hear of someone doing well, gives us all a bit of hope.


  • That usually works in the beginning, going in to lay down and sleep, until you get to the next stage, if you do, when it ramps up for most people.

  • Yes, I'm very tired at the moment and had to up my ropinirole last night. It's a known that symptoms worsen the more tired you get in a lovely vicious circle...

  • Hi you are very lucky that you can ward it off by going to bed, I think most of us either can't sleep because of it ,or like me goes to sleep for a while and wake up with it and that usually means time to get up ,hope you never get to that stage as it is sometimes unbearable THAT is when you need someone to talk to and this site is really good for that

  • I guess that is why it is called restless legs! you are experiencing the same as myself. I take temazepam at bed time to help me get to sleep faster also have the Relaxis Pad and now sleep at least 7 hrs.

  • what is the Relaxis Pad

  • kirkdale,

    Type in Relaxis Pad in the Search box at the top of the page and you will be able to read numerous past postings about this.

  • Being overtired certainly seems to make RLS worse, unfortunately the nature of the condition stops you from sleeping so you become overtired and then you are in the nightmare of the RLS vicious circle. I have a limited supply of strong sleeping tablets to take which knock me out within 15 minutes and use them only to break the vicious circle Its true what others have said that going to bed will not work as the RLS has you up and out of bed!! Maybe if symptoms are extremely mild you may be able to get to sleep but not as the condition progresses I am pleased that this is working for you right now x

  • I will admit sometime I know I am tired but I just want to finish something off and won't give in and then I end up in a right state with RLS on at full and nothing removing it except pacing the floor all night and then it's my own fault , but I cannot complain. .Most times it just comes on for no reason and it makes me so mad because I go all night without any sleep and I can't sort it now that Iv'e got used to the clonazepam. Irst dose of ropinerole Tues and in bed all day with nausea . Might ask the doc if I can try gabapentin with the clonazepam as someone recommended.

  • Oh my goodness, I feel so sorry for all you suffering folks out there. I admit some bouts can be worse than others and it takes every last ounce of mind control I can muster to overcome the urge to keep moving. Like the itch-scratch cycle, I find the more I move the more my ability to resist it takes a nosedive. At the moment I can control it and don't find the prospect of more meds appealing since I already take so many for other conditions (Levothyroxine for hypothyroidism; Tramadol, codeine phosphate (prescription strength), Naproxen and Amitriptyline for pain); Sertraline - anti anxiety; and finally Lansoprazole to protect stomach from all the aforementioned plus a multivitamin. I end up shovelling them into my mouth all at once to save time. And if all that wasn't enough to be going on with, since the 7th of this month my left hand has gone semi-numb with pins and needles and fingers so weak I can't even hold/use a fork properly (GP thinks could be nerve dysfunction). Oh well, I guess it matches my non-existent right (infraspinatus) shoulder muscle which apparently withered away due to nerve damage when I wasn't looking. Think I should have myself put down 😁.

    I wish you all well.

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