Do any of you really sleep?

SquirmingSusan · Post by **SquirmingSusan** » Fri Apr 20, 2007 4:50 am

My RLS symptoms are under very good control - occasionally it acts up during the day in my legs or arms, but I can usually run up and down the stairs a few times and it goes away.

But my whole circadian rhythm is out of whack. If my body had it's way, I'd sleep from 4am to noon every day. While I'm being a stay-at-home-mom that isn't a huge problem, although I'm never up to see the kids and hubby off in the morning.

When I went to Atlanta a few weeks ago, we had workshops from 9am to 11pm every day. At bedtime, I basically took one of everything that I had to help me sleep. :shock:

(I don't recommend this!!!) But I was able to be up and awake all day.

I'm applying for a full-time chaplaincy residency for next Fall, and am wondering if my sleep is going to be a problem. I'll need to get up early and function! I guess I'll adjust somehow, like I did in Atlanta, as long as the RLS symptoms are controlled.

How about the rest of you? Are your circadian rhythms way off, also? What do those of you who work days do to get to sleep at a reasonable time? Sleeping pills just don't work well for me.

I need to get me to a new sleep doctor, I guess, because now I'm on so many meds that say "Caution. May cause drowsiness." But I don't think I'm getting restful sleep.

Susan

becat · Post by **becat** » Fri Apr 20, 2007 5:13 am

Hi Susan,
I understand the question well. I often ask myself the same thing.

What kind of sleep do we have, good , managed, or out of control RLS, all of us?

In my perfect world. I would go to bed by 3-4 am. Then sleep til noon.
That time I heal. The hours before that and the waY I sleep now. I medicate to go to bed around 10 pm and rerad for 30-40 minuted. Honestly, I love a day or tow in the week to do just that. Work, move, and rest as my body wishes.
It 's tons less stress and fight.

Right now I could use some help decompressing, an overview of the time and place I live. Lets listen to my body and someone needs a fire close enough to singe. That time is coming.
I got through cycles. If I get lucky and have little to manageable outside stress long enough.....and the right meds, the right habits, I do so well.
If I get sick or off tracl, UGH!
Middle of the toad, I'm up 4-5 nights a week that I wake during the night, but can get back to bed within the hour. I love how the doc says" well thank goodness your getting 8 hours a night!) uufffaaaa

The wesrther changes here in Texas are just so strange for us. All this wonderful rain, heck of bunch of heavy thrunder stroms, and blessing rain.
It's been painful and a great challenge to just keep up.

wishes,
1 sleep, normal, Im tired and bed feels good.
2 energy. give me the energy to live tomorrow well.
3. I give it the sleep, I'm looking for some positive to bulid up.
hmmmmmmm a nap ona rainly day. I use to love thoses

Hugs Susan.
Lynne

Post by **ViewsAskew** » Fri Apr 20, 2007 5:26 am

I think we're in a bind. . .if the researchers are right, RLS disturbs our sleep because we don't get the dopamine we need until very early in the morning instead of in the evening. Then, we're flooded with it. We sleep blissfully. So, even if we take drugs (with the possible exception of the ones than increase dopamine), we stop the RLS, but we don't get the dopamine until early morning.

Just like both of you, sleeping at 3 AM or so is wonderful. I seem more rested with not as much sleep necessary. If I go to bed at 11 PM, I can't get up until 9 AM or I feel horrible. If I go to bed at 1 AM, I can get up at 10 and feel decent, but not great. But, if I go to bed at 3 AM, I can get up at 10-11 and actually feel pretty good.

Honestly, Susan, the days I have to be up early kill me. When I have a business function and have to do it for one day, it's not too bad. Two days in a row, and I'm not so good. Three or four in a row and I need to sleep for 12-14 hours to recuperate. I do just about anything to make my clients meet me in the afternoon. But when I have to go out of town to meetings and such, I just can't do that.

I have no idea of how to do it. I can say that it was much easier when I was on the Mirapex. I do believe it's because it gave me the dopamine much earlier. I could get up as early as 6 AM and do OK. I can't now. I don't have RLS 80-90 of the time and I sleep well through the night most of the time. But, obviously, it's just not the same to my body. I sure wish it was...

Neco · Post by **Neco** » Fri Apr 20, 2007 6:05 am

I've been a lifelong insomniac, and never had a permanent cure.
Although when I was working relatively most of the week before I injured myself last year, I did seem to have a slightly easier time, but still went to bed later than I should have.

I have tried to correct it many times.. Sometimes I can sleep and wake up in the morning and think everything is ok, but then I may be tired in the afternoon, or not able to sleep that night or something stupid.

It sucks..

jan3213 · Post by **jan3213** » Fri Apr 20, 2007 4:18 pm

I'm more like you, Zach. I haven't been a life-long insomniac, but I just don't sleep that well. No matter what time I go to bed, my body says "GET UP!" by at least 5 am. Lately, I have been able to go back to bed around 6:30 or 7 and sleep until maybe 9 am. But, that's it. So, I'd say I get, mmmm. 5 hours sleep nightly, none of it uninterrupted. I don't take naps, either. Not normally. I'm always tired.

I've wondered (and Lynne and I have talked about this) if my body is just so used to NOT sleeping that it's hard to get back in the groove. Hmmmmm

Sleep pills never work very long for me. I am better than I used to be. So, I guess I should be thankful for small favors! LOL

Funny thing, I can sleep in a car (not driving, of course! LOL). Maybe I should just have my hubby drive me around all the time. LOL

I hope all of you sleep, sleep, sleep!

Hugs
Jan

Sojourner · Post by **Sojourner** » Fri Apr 20, 2007 7:51 pm

I also have the 4 am and can sleep like a baby pattern....usually. My neurontin generally helps in the hours before that and sometime quite effectively. Still, if I'm having trouble sleeping, about 4 am seems to be the magic number. Sometime the "shift" is so dramatic it's almost like someone turning the bad switch off and the good switch on---almost instantaneous and markedly noticeable. As I am retired, I have the luxary of not having to be up at a certain times most days and rarely schedule any appointsments, etc. in the a.m. I do love to golf so in the warm months it becomes a minor issue...we should all be so lucky. There are days when I just lay in bed for an hour or so just enjoying the feeling.

Seems, I read someplace on this forum that if one were to change their sleep pattern to the 4 am cycle (or something similar) that the rls would eventually just follow that cycle after a while. Anyone know that to be a fact. Truth is I actually am a bit frightened about losing this "safe haven" as if I should have several bad days I can usually count on getting some needed relief during this time from sooner or later.

SquirmingSusan · Post by **SquirmingSusan** » Sat Apr 21, 2007 3:48 am

Very interesting, thanks for your replies. I think Zach summarized it best by saying "It sucks." It's like we're either tired all the time or completely out of sync with the rest of the world.

I wonder if that's true that if we just followed our natural sleep rhythms and slept from 4am to noon or whatever, that the RLS would catch up. Isn't the circadian rhythm tied more to daylight?

I was able to adjust my sleep schedule for 6 years when I delivered newspapers. Up at 3am and back to bed by 7 or 8am.

Well, I know I can medicate myself to sleep if I have to. So hopefully I'll survive a year of working 8am-5pm, and being on call at nights.

Susan

SquirmingSusan · Post by **SquirmingSusan** » Sat Apr 21, 2007 5:19 am

I just thought of something else. In my sleep study I had a delayed REM stage sleep of about 200 minutes. I'm not sure, but I don't think that when I drug myself to sleep, I get any dream sleep at all. At least until the morning hours. I know I dream in the morning, and when I take naps during the day.

What happens when you don't get enough dream sleep?

Susan

Post by **ViewsAskew** » Sat Apr 21, 2007 6:11 am

I had a chat with Dr B about this one time. . .

A few years ago, I read that it was better to try to get a second shift job because it would allow us to sleep at that 2-4 AM until noon range. But, when I said this to Dr B, he said, nope, that the dopamine production would simply shift over time - maybe a few weeks and we'd not be able to sleep at 2-4 AM anymore.

I feel that it has helped me to do that, though. I spent my entire college career that way - waitressing nights, taking mostly afternoon classes. I slept much better that way. When I had an internship during my graduate degree, I had to be there at 6 AM so I could get to a 4:30 PM class. I had to leave my house at 5:15 AM. I never got used to it and was exhausted the entire semester, even when I got enough sleep. So, for me at any rate, it does help to go to bed later.

Per the dreaming, if I went to bed at 11 pm and got up at 7, I would likely not be dreaming when I awoke, but if I went to bed at 2 AM and got up at 10 AM, I would undoubtedly be dreaming. I also had delayed REM, but to me, missing Stage 3 and 4 from the PLMD was the worst - it made me very, very tired the next day.

When you are really tired, you don't get as much, if any REM - it's like the body knows you need deep sleep, so it doesn't bother with REM. But, if you don't get deep sleep (because of PLMD, let's say) then you are always very tired and don't get much REM, either.

As I understand it, and I don't know much, non-REM is restorative sleep. They still don;t know much about what happens. Recently they tied sleep to the ability to some type of memory - can't remember how, though.

Walking After Midnight · Sat Apr 21, 2007 6:20 am

I don't think I dream anymore. The only time I remember a dream is if on the weekend, I get up in the morning, use the bathroom and lay back down cause it's cold and doze back off for an hour or so.

Usually, weeknights I get to sleep between 12 and 2 and am up at 6. Now that I work 7-3 instead of that God Awful 6-2 shift I was on for awhile. On weekends, I am awake naturally after 4 1/2 - 5 hours of sleep. That's it. There 's no way I can sleep 8 hours. No way. I don't care if you have a hammer and knock me out everytime. I would like to sleep...just can't.

My Mother has never slept more than 4 or 5 hours at a time either and my older sister is the same way. My older sister Deb is having a lot of trouble with RLS, Leg Pain and Back pain. She's been off work for a while now and always looks tired and ragged. We were talking...why do we have such trouble falling asleep and then staying asleep, and then are so tired in the afternoon? I will be dragging like crazy, but will be unable to get any quality sleep.

Oh well. Just like everything else...we deal with it.

SO...no I don't think we ever sleep. Just kinda lay down and snooze.

Aiken · Post by **Aiken** » Sat Apr 21, 2007 7:00 am

Moi aussi.

I have, since college, preferred to go to bed around 2-4 and wake near noon. I've tried other routines and they always settle slowly back towards that, especially (but not only) if they're earlier ones. I'm fortunate to have found a job that lets me get away with that.

Right now, I'm so anxious about my inexplicable health issues that I make chemically certain I stop being anxious and start getting sleepy by 1ish, because there's no more anxiety-ridden time than 3am and I don't want to be awake for that, but it's unnatural for me and the sleep isn't ideal.

dellkr · Post by **dellkr** » Sun Apr 22, 2007 3:33 am

I know that when I was still teaching in the public school classroom, I had a horrible time...having to be in the class and mentally more alert than my students at 7:30am was REALLY starting to be a problem...and when you teach kids with emotional and behavior disorders...not good!!

The whole sleep issue is one of the reasons I decided to go back to school to get my doctorate...I have more flexibility with the mornings, and since I'm wide awake and pacing at night, it get my best writing done (I'll be finished with the PhD in Aug 08...3 years start to finish!) BUT....it does still affect my mental functioning if my pain is not under control...which it hasn't been for the past 2 months...the klonopin knocks my rear end out, but dosen't do squat for the pain. That's the next step I guess

stitch · Post by **stitch** » Tue Apr 24, 2007 4:26 am

All those posts are very interesting. I can relate to all of them. When my boys were young I couldn't get to sleep until around 2am and wanted to sleep in every morning. Later when I left my 1st husband I went to work in a craft store and had to be there at 8am but most of the time got there around 9 an hour before the store opened. When I worked for the Government and was in a van pool that left at 6:30am my body never did get use to that time. I would come home and try to take a nap and the legs would start

I have read before that ppl like us get our best sleep between 4am to 10/11am. But after I had my back surgery and my legs were under control I would take my nite meds go to bed around 2am and sleep on my back and would not move until 11am the next morning. That is what I like about retirement. But I use to stay up late and do my cross stitching until 2 or 3am but can't do that any more.

So we are all alike but so different with our rls and what meds we can take. The doctor's just don't understand that and what works for one but not the other. And they have no clue about the ferritin levels and they should be 50 instead of 10 like mine was this past week. Jeannie :roll:

SquirmingSusan · Post by **SquirmingSusan** » Tue Apr 24, 2007 5:22 am

Jeannie, it's good to see you posting again. Yes, it is wild about the meds. I'm starting to think that there isn't just one Restless legs syndrome, but about 50 related syndromes!

And in January, I had my blood tested and my ferritin was 8. My doc told me that was fine. NOT. I've been taking iron ever since. I should probably have it rechecked one of these days.

Talking about dreams - I couldn't get to sleep last night - I think cutting back on the Lyrica didn't help. That stuff has just been making me so sleepy and stoned feeling, that I decided to start tapering off. Got the OK from the doc to do that today. But anyway, not much sleep last night. This afternoon I just conked out for about an hour. I had the most wild dreams! In one of them I ran into a lake at high speed, then had to swim back to shore. I could feel the cold water flowing against my body and it felt so great. That morphed into something about being pulled in some kind of dogsled arrangement down the streets - again very high speed.

LOL! With dreams like that, no wonder I don't feel rested. :shock:

Susan