WED/RLS symptoms while asleep

Post by **badnights** » Mon Jun 20, 2011 5:15 am

Why do all the official descriptions say that RLS symptoms don't happen when you're asleep??

When I wasn't being treated and I could actually fall asleep, I would wake up from the sensations all the time. They were definitely in me while I slept and I know this because they woke me up! So they weren't in me for long while I slept but they certainly were there.

There is no worse feeling than being exhausted and having those screaming vile sensations drag you away from sleep and force you into that waking hell of ambulatory exhaustion.

The sensations come on me when I'm awake or asleep. They can come on me as I sleep and wake me up.

Do other people get this?

cornelia · Post by **cornelia** » Mon Jun 20, 2011 10:20 am

I experience the same thing and many more of us I think.

I guess it is called PLMD as soon as you wake up from it, but I agree that RLS is in you al the time (24/7 RLS) and I don't know why they say RLS is an awake thing.

Corrie

Post by **Polar Bear** » Mon Jun 20, 2011 11:27 am

It is certainly with me 24/7 and I am medicated 24/7 tho the meds are of a much less dosage from about 3am until lunchtime.

And as for being exhausted and having symptoms !!!! .... if we were sleeping we'd call it a nightmare.

Post by **ViewsAskew** » Mon Jun 20, 2011 8:42 pm

I'm in absolute agreement.

I've always interpreted it as you can't stay asleep with it, so it really doesn't happen while asleep. It may start while asleep, but darn if you aren't awake mucho pronto!

Post by **badnights** » Mon Jun 20, 2011 11:55 pm

that's the key. It starts while you're asleep. The last issue of Nightwalkers, and other descriptions I've seen, and the technicians at the sleep lab I went to, all say that it doesn't happen in our sleep. Those technicians don't allow that it happens in our sleep and wakes us up; no, they believe that once we're asleep, we're safe from RLS sensations until we wake up again.

I say, NOT TRUE.

I'm not sure what the doctors believe who write those descriptions, but I suspect a lot of them have got it wrong too.

SquirmingSusan · Post by **SquirmingSusan** » Tue Jun 21, 2011 4:26 am

I don't get it in my sleep as much anymore, since starting Xyrem. But sometimes I do dream about having to move my legs, and trying to move them to get rid of the RLS sensations wakes me up. So yes, I agree that we can have it anytime.

Andreadrea · Post by **Andreadrea** » Wed Jun 22, 2011 5:58 am

Usually I have symptoms when I'm trying to sleep, but sometimes I have them just after falling asleep, and it wakes me up. Then i'm up for 2-3 hours!

dogeyed · Post by **dogeyed** » Wed Jun 22, 2011 2:06 pm

Also, I think they have been doing sleep tests to see how many times a person's rest is disturbed by the RLS clenching legs, and in fact I had one place tell me I didn't have RLS because I didn't wake up at night! But they got it backwards, I think it's PLMD at night and RLS at day, but I SAY RLS is RLS no matter when, where, or why. Maybe PLMD is a subset of RLS, I surely do not know. But yeah, I think most people have a heck of a time at night, waking up early, can't get to sleep, etc., thus the user names and phrases like "Walking At Midnight," or "Night Walkers," and so forth. GG

moonlight · Post by **moonlight** » Sat Jul 02, 2011 9:18 pm

I agree rls is definitely there when I'm asleep as at the moment it wakes me up nearly every hour as i'm in so much pain and constantly moving and kicking my legs and when its really bad my arms have it to.
id be asleep if it wasn't there.I get up in the morning feeling like i've done rounds in a boxing ring my body aches so much.
Also ask my hubby and he will say its there when i'm asleep after all he's very often on the receiving end of the kicks .

sleepdancer · Post by **sleepdancer** » Sun Jul 03, 2011 2:09 am

I'm wondering how often those who suffer at night aren't accurately diagnosed and actually also have PLMD. Although I agree that it just makes sense to me that RLS could happen while asleep. I mean, why not?

Andreadrea · Post by **Andreadrea** » Sun Jul 03, 2011 4:59 am

Actually I do move my legs a lot when I sleep, but it doesn't usually wake me. You can tell which side of the bed I sleep on, because the sheet wears out twice as fast on my side

Post by **badnights** » Sun Jul 03, 2011 6:17 am

I asked my sleep specialist, whom I just saw, why they say RLS doesn't happen when you're awake. He replied more or less as they do in the books: if anything happens in your sleep it's PLMs, by definition.

That doesn't make sense to me because PLMs are rhythmic and involuntary, and they are not accompanied by wierd sensations/pain or an urge to move. RLS is an urge to move, usually accompanied by wierd sensations/pain, and is voluntary (but unavoidable). And it does indeed happen when one is asleep, serving the life-destroying purpose of waking one up.

(That's what's so horrible about it; you have to wake up to perform a voluntary movement, whereas it's possible to stay asleep during involuntary movements if they are not too wild.)

He was slightly apologetic, maybe he understands what I'm saying. It's just semantics to him, probably not worth much thought when there are so many more-important things to think about. But I still find it irritating to be told I don't have RLS when I'm asleep.

Post by **ViewsAskew** » Sun Jul 03, 2011 7:12 am

Beth, I find it more than irritating...they are missing a piece of it and not taking it into account when researching it. Now, it probably doesn't matter, but I'd rather they understood it completely and didn't discount any component of it!

Post by **badnights** » Mon Jul 04, 2011 12:01 am

they are missing a piece of it and not taking it into account when researching it

I suspect you're right Ann. It was distressing to see what I think of as mis-information in Nightwalkers. Gee!

I think we can trace it to Dr. B. The article purports to be based on his Coping book. In that book (p1) he states "A person must be awake and conscious to be bothered by RLS." Yikes! Then what is it, pray tell, that wakes me up? Again (p1,2), "RLS is an awake sensory phenomenon with movement due to the sensations"
please oh please some indication that you realize it begins while we're asleep!
?Maybe he doesn't realize it!

sleepdancer · Post by **sleepdancer** » Mon Jul 04, 2011 5:07 am

I've talked to some sleep techs about this, and even among them there seemed to be inconsistency. But anyhow, one can have periodic limb movements, meaning the legs move periodically and this is not specific to cause. Not the same as having Periodic Limb Movement Disorder. The movements have to meet specific diagnostic criteria before "Disorder" is attached, making it a specific diagnosis, not just saying the legs move sometimes. So, a sleep study reporting PLM's is not the same as being diagnosed with PLMD or PLMS (Periodic Limb Movements of Sleep). Also, it makes a difference if on a report the PLM is followed by a small "s", just making it plural, or a capital "S", making it a diagnosis. Did I just muddy the waters?

About the RLS, all I can say is our sleeping bodies respond to physical sensations all the time - why not RLS? That's why I don't see why it is presented as so absolute when to me the greater question is why would we not expect it to wake us? We wake up to pee. We wake up when joints hurt and we change positions. Those with sleep apnea aren't awake when they have an apnea, but our bodies certainly respond with a struggle to breathe that often involves moving around. I think in the future this won't even be questioned. Medical science just has to catch up with human experience.

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