Studies claim that RLS patients rarel... - Restless Legs Syn...

Restless Legs Syndrome

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Studies claim that RLS patients rarely report excessive daytime sleepiness. Is this true for you?

Daragh profile imageDaragh344 Voters
122
I'm mildly affected by daytime sleepiness
101
I'm significantly affected by daytime sleepiness
66
I suffer from excessive daytime sleepiness
55
I am not affected by daytime sleepiness
42 Replies
Rubylane25 profile image
Rubylane25

When I am on meds that help with RLS however there have been months when I was not on anything. In those days while not on meds I would spend almost the entire night standing or walking and would be exhausted by the time day light arrived!

blueeyes5262 profile image
blueeyes5262 in reply to Rubylane25

Yep,what a night mare..I would get so exhausted from walking all night,I would go out side..I found that was not a good Idea,as I passed out a couple times,and no one knew where I was..Tramadol,saved me...

extremenightwalker profile image
extremenightwalker in reply to Rubylane25

exactly the same as me. only during daytime i still could not rest. the moment i put my feet up or lay down my rls would kick in, no pun intended.

cicek profile image
cicek

In the early days when I began taking meds I was affected by daytime sleepiness but now I do not have problem.

Carol456 profile image
Carol456

I can sleep on a clothesline after a bad night, and cannot get on a bus without im asleep in seconds

Tonysnug profile image
Tonysnug in reply to Carol456

Ah Carol. 😂 I mean no disrespect, I just loved how you can "sleep on a clothesline!" . Bless your humor within a not fun at all situation!

spike28 profile image
spike28

in the daytime, ironing, im falling asleep, going to appointments, falling asleep, reading, on the pc, eating !!, falling asleep

I went for 14 months without any meds, and i was a mess, no sleep, and kept having to nap in the day. I was completely exhausted, my life wasnt a life. Now since i have found a med that works mostly i am living again, altho sometimes i get the side effect of sleepiness in the day.

spike28 profile image
spike28 in reply to

14 month's how in the heck did you survive that :(

in reply to spike28

Hi spike, i do wonder, looking back how i did survive. But like i said, i was a mess. Hardly left the house, my house was becoming a mess, didnt have the energy for housework, or very little. I had tried almost all the meds and either they didnt work or i couldnt tolerate the side effects. So, after 14 months, i found out the Neupro Patch was just approved for RLS here. So, i was straight down the doctors to get it. I was a happy bunny again, as it was probably the best med i tried. That was until it caused me rebound. So now i am taking Pramipexole, which if i am careful with the dose works most of the time......for now..... :)

spike28 profile image
spike28 in reply to

i have that, mirapexin ER, it works for me to :)

long may it work for us i say :)

desperatedan1 profile image
desperatedan1 in reply to

please tell me what meds you are on

Diane60 profile image
Diane60 in reply to

ironic really. My meds can cause drowsiness with me, and they have also been masking a few things. This happened years ago with an illness too. It is only when symptoms are full on and I can't take it any longer that investigations are done and bingo another ailment added to the list and generally another medication that is sometimes contraindicted to what I am already taking, but the positives outweigh the negatives. I have, amongst others, 3 particular medications that really should not be taken together.

I read so many of these comments that Tramadol is extremely helpful for RLS. I currently take Tramadol Slow Release.... 200mg morning and 200 mg night. I also have Panadol Osteo which is 665mg Paracetamol from 2 to 6 a day. I am on 200mg Zoloft every day and Sandomigran of a night. I also take Stemetil in the morning and Simvastatin at night.

I take Caltrate Plus

Magnesium

Curcumin.

This RLS was bad enough but over the months I thought I just had a muscle weakness but then the same sensations started happening in my arms as what was happening in my legs. I also have recently noticed the same sensations in my back. This is extremely worrisome.

maesllan5 profile image
maesllan5

I stopped myself from sleeping in the day hoping to sleep at night, but that didn't work!

in reply to maesllan5

Sleep hygiene would say don't nap during the day - but if you can't sleep at night a daytime snooze is a must in my opinion - our bodies need the sleep regardless of time of day.

maesllan5, i always nap in the day, when i have had a bad night. The "experts" used to say do not sleep in the day after a bad night, but even their thinking has changed over the years. RLS will get us if it wants to, whether we nap during the day or not. So, nap away if you can, better than being sleep deprived. :)

gypsy49 profile image
gypsy49

I haven't slept years.... not a whole night when i don't sleep at all then im hyperactive in the day but...... if im doing something thats slow texting...ironing... cooking... i nod off strange feeling though never fall to sleep just nod jerk awake , some folks tell me get job at night ... but then still have the probs sleeping in the day rls kicks in any time day or night as Elisse says , wish i could nap might actually help lol

in reply to gypsy49

I jerk awake all night too.

nightdancer profile image
nightdancer

HI, all, Been a while! where are these studies? That pie chart is very accurate, and probably out of the people that report significant daytime sleepiness, the ones who don;t may be afraid of losing their jobs for one reason or another. That is my experience in my groups over the years. some wold dare not tel their doctor that they have lots of daytime sleepiness, because they may be afraid their meds miht be changed that otherwise work well for them, too. :)

I can fall asleep at the drop of a hat during the daytime. There have been times recently when I have had problems staying awake on the bus. Feel disorientated when suddenly coming to. When I have had to go out after a sleepless night, even crossing the road has caused some close encounters.

bedith6 profile image
bedith6

Hi Everyone It's been a long time since I posted anything. For the past year I have been taking 10mg. of Temazepam which now doesn't work as well so Doc has put me on 20mg Temazapam. It works o.k. but I still don't get more than two hours unbroken sleep which I know is better than nothing. My G.P. asked me to see him today and he wants me to try 100mgx2 of gabapentin as well but I'm a bit worried about side effects. Has anyone out there had experience of taking the two meds together and how does gabapentin affect you?

blueeyes5262 profile image
blueeyes5262 in reply to bedith6

That's an antiseizure medication..Go to web MD..You can read about it there,or read about it on the treatment page,for this site..It tells all the drugs,and what they use for RLS..side effects and all..I myself,would not take an antiseizure medication..

ilfordonian profile image
ilfordonian

Haven’t been here for a while, hence my late response. My neuro started me on Modafinil last December which has transformed my life. Not only do I no longer fall asleep at my desk at work, I actually feel awake in the mornings.

VinceFW profile image
VinceFW

Having a sleep latency of 4.8 puts me in the same category as a narcoleptic according to my specialist. The latest polysomnogrhies include tests on daytime sleepiness. It's ok knowing you have daytime sleepiness, but how many people who suffer from it report it to the DVLA? It is one of thier notifiable conditions and you will need to surrender your driving licence. Perhaps this is why so many people won't admit to having excessive daytime sleepiness? The knock on effects are that you can't drive and that can spell the death of your career, livelihood and condemn you to a life on benefits! At £72.20 per week, getting used to that standard of living after earning £750 per week is a bitter pill to swallow..especially when you also lose your freedom to travel and need to be reliant on public transport and the generosity of others to get you anywhere.

Hopeless100 profile image
Hopeless100

After not much sleep at night, what else would you expect? Varies a lot, but trying to settle down with a book in the afternoon, the RLS starts again,,,,

NICTIN1942DANJAS profile image
NICTIN1942DANJAS

I START TO GET TIRED ABOUT 5PM,THEN I TAKE MY FIRST MICROPEXIN, AT SIX PM,THEN MY SECOND AT NINE PM,THEN I SLEEP LIKE A LOG.

rita2u profile image
rita2u

Occasionally, should I go for a lie down during the day, I may find the restless legs kicks in.

BBGuess45 profile image
BBGuess45

I fall asleep often day or evening, in a cab on the way to or from a medical appointment, but rarely at night in bed, because of RLS. My legs get so active in half sleep that in the early pitch-black morning I find myself horizontal, lying across the bed, not for the head to the foot. 'sWeird trying to sleep, seems as if Restless Mind Syndrome is a part of Restless Legs Syndrome. What a curse it is. Once a person dies, RLS does stop, doesn't it? Future zombies

in reply to BBGuess45

yes, i do that, it feels like the weight of my feet hanging over the side of the bed helps.

pete.

i will be 74 next week. a lifetime of rls, i cannot remember when it started. while on holidays in our caravan my whife would sleep in the car to get some peace. we have always had seperate beds and now rooms. i sleep about five hours a night with the three pramipexoles, up about 04-00. but i want to pass out at anytime dueing the day if i sit still. i even have to stand or walk about while playng bingo.

the odd night when i spend it on my knee,s with my legs locked beneath me, ha, ha, ha, i find a tablet next morning still in the box.i had forgotten to take it. i still have rls during the day if i dont keep moving.

when i read all the comments i smile and think, yea, been there,done that.

regards to all, pete.

BBGuess45 profile image
BBGuess45

Nodding out 24/7 is a fact of life, your body must have rest so it can recover to dance another dance, or in my case, violently kick. Care Givers or Nurses dressing the wounds on my degloved left leg learn quickly to work from the side and never in front of me

blueeyes5262 profile image
blueeyes5262

My problem is,I can't sleep,and the restless leg,is much worse,with no sleep!!

BBGuess45 profile image
BBGuess45

I'm very alert during the day, when I'm sleepless for days and days. Four days seems to be the limit. I do nod off during the day uncontrollably, nice two-four hour naps, waking up staring at the same spreadsheet, web page, or looking at a Miro poster on my wall.

If there's a pattern to my energy and sleeplessness. I haven't spotted it. I've come to think of it as me, The RLS is painful and destructive, and could cost me my left leg. The sores on the knee cap from nighttime bashings into the underside of my desk are bone deep, and growing bigger.

This may sound very Lame, because it is. I have Duct Tape and Foam rubber to be stuck to the underside of the desk. Well-Meanings have sat and held the tape and foam rubber saying 'y'know someone should pad his desk, then left on their appointed Well-Meaning Rounds. I can only use one hand, my left side is partially paralyzed.

Writing is my solice

i recently spent 62 hours awake no sleep at all, and for the following week had a total of 12 hours sleep. i was a zombie, i even somehow turned on the toaster whilst in zombie mode picked it up using my fingers inside the slits. burning them. why i did it there is no answer other than the toaster was where my kettle used to be. maybe i was trying to make a drink

justcrazer profile image
justcrazer

after 3or4 nights with out sleep i will crash in the afternoon

hazelrobson profile image
hazelrobson

Before I was on ropinirole I hardly slept at all.nights were hell , I got so anxious trying to sleep. Usually ended in tears. Had trouble coping with work. Driving long journeys difficult and had to back out of meetings cos I was in danger of crashing. If I sat down I'd fall asleep. Became very depressed and put on loads of weight. Despite constantly telling the GPs they did nothing.

If I was drug free I would rarely sleep properly and would be constantly fatigued, I'm surprised at those results.

desperatedan1 profile image
desperatedan1

i have rls and have tried all the meds to no avail i get very little sleep and when its at its worst both legs go off in 20 to 30 seconds and can last for 4hrs I'm at times wanting my life to end as their is no end in sight

Mopsy1950 profile image
Mopsy1950

If to bad nights then very tired

stan38angler profile image
stan38angler

depends on what type of nights sleep ive had bad night will fall asleep when having food/watching tv etc

lmbrrg profile image
lmbrrg

I am awake from the maybe 2 to 3 am .I keeping going all day .

occasionally have a 5 minute doze .

niabxxx profile image
niabxxx

I've never had excessive daytime sleepiness even though I have a horrible case of restless leg syndrome. I didn't take medication for the first 20 years cuz I didn't know what I had. I would be lucky to get 4 hours of sleep and of course that was interrupted by waking up many times. but when I got up in the morning to go to work I would somehow just forget about the horrible night before and gather my energy with a cup of coffee and go forth. Of course I can feel that my energy levels never were at their highest but I had enough energy to get things done during the day for sure and coming home at night to sit down and relax after A Hard Day's Work there was the restless legs waiting for me again. Again and again day after day year after year decade after decade.