RLS symptoms relieved when going to bed

I find this hard to believe myself as mine - and it seems most others - gets worse in bed but I have two friends who have not been formally diagnosed with RLS but after a lengthy 'consultation' with me I am sure they do have RLS!! One is my brother and the other a friend - both report RLS when sat relaxing on an evening but it goes away when they go to bed and lie down?????? Anyone else come across this????

PS - I love this site!!!

19 Replies

  • RLS is usually present at bed time, its at night that the dopamine levels drop which is a reason why we cant keep ours legs still. One of the criteria for RLS is, when trying to sleep or are asleep the RLS will stops us sleeping or wake us up.

    So what sensations are they getting when relaxing, and do their legs jump and to get relief do they have to stand up and walk about. Maybe they just have it mildy at the moment and its not disturbing their sleep...

    But i havent come across anyone who has RLS, that it doesnt disturb their sleep at night.

  • No, not come across that! Lucky them!

    What makes you so sure they do have RLS?

    Kaarina :)

  • this is a new one for me ! RLS is allways worse at evening times, have they been diagnosed with RLS ??

  • That used to be the case for me many years ago. It would be terrible when I was sat in a chair but once I got completely horizontal it was OK. That was in the days when my RLS was intermittent and only came on when I was very tired. As I've got older it has changed so much and now it comes on every night and going to bed doesn't help. Only strong medication does. Last night I took 7mg of clonazepam. It just wouldn't stop. The dose I took would have felled an elephant. I'll have to do something different tonight. Maybe up the gabapentin.

  • Hi magggzzz

    Both the cases I mentioned are mild forms of RLS from what my brother and friend says so that does match with your experiences. I started the thread for a discussion as this site is a good reference guide for others and helps us explore this nightmare condition more.

    My RLS is mega worse when I lie down!!

  • At least they both have RLS in its mild form, and that is why their sleep is not disturbed for now....When mine first started i could "feel" it at night, but just put my legs and feet in a colder part of the bed, and off to sleep i went. The days before it got worse with age, the days before i had to resort to meds.

    RLS, for most WILL get worse with age, i dont really know why, maybe we are not as active, or the chemical dopamine changes in our brains with age...

  • My RLS is also relieved by going to bed. I feel so sorry for those I read about on this site whose RLS destroys their sleep. My RLS starts in the evening, especially if I'm sitting on the couch with my legs down. I am forced to go to bed at that point. Usually I can sleep through the night, but there are nights when the RLS won't be helped by anything and I have to get up and just deal with it.

  • I have had rls for about 8 years now and it is generally better at night when laying down...so far! The only time this doesn't happen is when I have had cellulitis in my leg, that was a difficult time as I could walk properly yet I couldn't stay in bed. I am not yet at the stage of being on medication yet its at the back of my mind as i don't always want to go to bed at 9.00pm every night to alleviate the effects of rls. I am holding off for as long as i can.... and hoping this cool summer we are having will stay so it doesn't get any worse if the temperature rises.

  • I have never heard of this either, I do suffer in the evenings but it does not stop when I go to bed, I wish it did. My daughter hs now developed the sme symptoms as I started with.

  • Thanks for the responces folks - it seems it is a feature of early very mild RLS which fits with both my brother and my friends explanation - not sure if I should let them know its only going to get worse!!

  • when i was diagnose as having RLS i was told it would gradually get worse, i think thats normal practice

  • I would not tell them this bad news. What good does it do to mention it. It may not happen. Mine is intermittent and I am not on any meds for it. I am never affected night, after night like others, for which I am eternally grateful. I am 61 years of age now and the horrid symptoms began to raise their ugly head in my twenties.

    Kaarina :)

  • That's how it used to affect me, when RLS was an occasional irritation rather than a major problem - I could always stop it by just going to bed. That was about 30 years ago.

  • when I was teenager, I used to feel it a little on a long ride. then I broke my back, and I had more sever RLS, but when back then I would never have said anything about it, because I could usually get to sleep. Now it is 24/7; have to take meds all day and all night to keep it under control. Then, I had my hysterectomy when I was 29; cancer survivor- but that is also when the RLS started up big time and never let up after that. when we get older we DO produce less dopamine, so that may have something to with that. For the people that the dopamine meds do not work for at all ( me, for one)

    I just do not think we can connect the whole thing to dopamine. Lots of people have to try other meds than just those. For me, the only thing that calms the beast is narcotic pain meds and sleep meds. It is important to tell newly diagnosed people the fact that there is no known cure, so that they can get prepared. Kaarina is VERY lucky. :o) her story is out of the realm of "normal" RLS stories, whatever normal is. :o)

  • yes this is what happened to me when I had RLS in a mild form, when I wasn't on any medication.Usually RLS occurred when I was overtired so going to bed and relaxing eased the symptoms.Now that I have RLS IN a chronic form and take medication for it I walk the floor at night to relieve the symtoms.

  • Thanks again for feedback folks - maybe this is something that can be included in the UK booklet that might be produced - see other blog - as an early stages indicator for those who dont understand this condition - glad we explored it

    I will keep blogging various points however trivial as its good to expore them and its a good reference point for others

  • I have held off posting exactly because of the fact that for me going to bed (laying flat) provides relief to very painful RLS and that is opposite to what most people describe (they need to get out of bed to get relief). And yet, it sounds like it's actually quite common, especially in the early stages!

    Definatley something that should be listed/noted in any information booklet so that those who think they may have RLS but get relief by going to bed know that they could still have the condition.

    Oh, and although the RLS I expereince is relieved when laying down in bed any chance of an undisturbed nights sleep is totally destroyed by crazy amounts of PLMS (periodic limb movements in sleep)...

  • Glad this was useful to you. Glad I raised the point

  • How nice must that be.

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