Restless Legs Syndrome
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Proximity and phone screens

Hi, I've had RLS longer than I can remember, even as a kid I used to sleep with my legs pointing up against the wall. I've tried the docs a couple of times but they have little interest, they give me a flyer and send me in my way.

Im past looking for a solution, and no interest in men's but keen on feedback for the following.

Does anyone else find that RLS increases when sharing a bed?

Has anyone else found that looking at a phone screen in the dark almost instantly stops their RLS?

Thanks

LB83

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PS I meant meds not mens haha

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Yes and yes. I find that when I have a bed to myself I feel less anxious about accidentally kicking my wife. We were on holiday recently and had such a massive bed that we could stay well apart and I found I slept better. As for using the phone, I do find that as soon as I engage my brain in any level of activity (even composing a message like this) the RLS symptoms reduce immediately.

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Hi laughinboy83, yes I find it helps to sleep separate sometimes because it's less stressful, which in turn has an effect on my RLS! Keeping my husband awake because of constant movement is not good for either of us.

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Cannot answer about looking at a phone screen in the dark as I do not do this but getting up and doing anything, ie emptying the dishwasher for instance, makes my RLS go....

I am interested to know what the flyer is about that you are given by a doctor before you are shown the door. ;)

I have not tried sleeping alone, we have a large bed and my RLS is intermittent. I usually get out of bed when suffering, but I can understand perfectly how sleeping alone would be beneficial when suffering with RLS.

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I don't have the flyer anymore it was pretty useless, just the generic advice you get from NHS website, avoid coffee, exercise etc etc, I do all of these but doesn't make a difference.

Thanks

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I bet you do not have that useless flyer anymore! ;) Pity it was not a flyer from RLS-UK. I think that may have had more useful information in it. ;)

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Stress and distraction!

The stress of trying not to disturb ones partner inevitably gives rise to rls. Think of being told not to think of " pink elephant " - 😠impossible.

Doing almost anything (except reading) seems to stop the rls promptly- but it returns just as promptly when you return to bed.

So- does that mean there is a large element of psycho something (!?) involved in RLS?

I have tried mindfulness to no real good effect- the restlessness just creeps in from the toes.

Cheers.

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If thats the case then you dont realy have rls because it doesnt go away just like that soz to say.

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Well I do,but apparently your experience makes you more of an expert than other sufferers with slightly different symptoms ... And leading medical experts.

From other replies it seems pretty evident that focusing on something reduces symptoms, hence why reading something on my phone does.

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Everyone is different and ways of coping vary. I play Solitaire or go to eBay, just to pass the dark hours while suffering! Nothing that requires much in the way of concentration, because it is almost impossible 😨

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Well said, Laughinboy. :)

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Jeanniebeannie its the distraction, When you are concentrating on whatever you are doing whether that be on the phone or maybe doing a jigzaw, sewing. etc etc. You really need to not keep telling people they dont have RLS.

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Hi soz but truly i have paced the floor for hours even on mt feet its still there bn on medication for years and no distraction makes it go for me becausr its so severe when its there i got to get up as its pure hell yes distraction if you keep busy and get up but in my case i just need to wait . Torture is all i can say :(

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Maybe you need to look at why your meds are not helping. I know what those nights are like, i have them myself and i do the pacing too.

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Yes .hi i have uped my dose but it makes me worse and my arms too at times .defenately worse and drowsy if i up a dose and made me tired at work .

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Jeanniebeanne which meds do you take? x

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Jeanniebeannie i am asking the same as pippins is, what meds do you take. I am at a guess thinking its a dopamine med, also give the dosage of your RLS med AND any other med you may be taking whether from your doctor or a OTC med.

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Hi i take pregablin one at nite with one and a half pramipexole whick was worked out as more makes me worse and that was a neurologist that prescribed that.

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What is the dose of your pramipexole..? It sounds like you are having augmentation from the pramipexole. If so, then you need to get off the pramipexole. And you will need to wean donw very slowly and ask your doctor for a pain med like Tramadol because you will suffer with the withdrawals. Lots of posts on here on augmentation, you should put RLS and Augmentation in the search box and you will have lots to read about augmentation which should be helpful to you.

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For SOME people, distraction DOES help. Everyone can have a slightly different experience with RLS, people describe it differently, etc. There are also differetnt "layers " and severities of RLS. But, you cannot tell people they do NOT have RLS. Different things help different people, jeannie, and maybe you have not found the med for you, or the "trick" that helps you. But, most assuredly, what is being described here is RLS. Sound like you need some help to get yours under control a bit. , about. We can NEVER completely control it, but some people have some good experiences. My RLS is severe, but have meds that control it, after 45 yrs, about 90% of the time.

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Very difficult to share bed with RLS sufferer. My husband often disappears to the spare room. Listening to my phone really helps during the night but doesn't help with sleep!

Good luck.

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Haven't slept in same bed as hubby for over 20 years because of the RLS so I don't kick him awake and I can walk around huffing and puffing! When RLS kicks in, I sit up and watch boxsets on my laptop while moving my legs constantly, so yes, distraction helps. Just lying there with legs trying to dance out of the bedroom is no fun!

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I only had intermittent RLS before my husband died in February. Sleeping by myself, it has increased horribly since then. After almost 8 months now, I finally found the right meds that work for me. 300 mg gabapentin at 6:00 pm and then another 600 mg at 10:00 pm. Also added 250mg magnesium and I almost never experience the horror of my RLS. It's been a lifesaver for me.

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I find distraction as in getting up and doing something helps but in my case it is the movement rather than what you am actually doing that helps. Distraction such as playing a game /watchtv/playing on phone and ipad etc does not help me personally --I have to move but I know it helps some people. Whatever helps is good! Pipps x

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Distraction of moving is my "distraction". I have to get up and move, it cannot be ignored when it hits me, but meds are helping a LOT.

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My husband breathed a sigh of relief when we got divorced, saying at last he could wake up without bruises and that I moved every 4 seconds even when asleep. For me trying to stay still in a double bed was torture. I always had to get up. In the morning I felt like I had run a marathon...Ah the good ole bad days.....at least I suffer alone now and so can move when I need to etc. etc....!!

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funnyfennel so you have PLMD aswell as RLS.

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