Who's trying to get to bed and get up earlier??

[CAcfs]

I'm trying to do this....though I am facing a huge uphill battle.

There are groups on Facebook and Twitter where people motivate each other to get up early, and to exercise first thing. They post daily, things like, "good morning, just got up!" I joined one of those groups, but my cycle is so different than these "normal people" that I feel like I don't fit in....I mean, some days I get out of bed at 2 PM! HORRIBLE, I know. Trying to change it. I have certifiable Delayed Sleep Phase Syndrome (DSPS), am seeing doctors, etc.

I am looking for emotional support, wondering if anyone else is going through this? Does anyone want to post somewhere about your daily progress, and we can cheer each other on? I would like to start a Group on Facebook for those of us trying to change our sleep cycles, but I'm nervous and don't know if I have the energy to keep logging on. Just don't know if I should/can take that leadership role. I wish a group for DSPS people who are trying to change already existed online, but can't find one. I need a place that will hold me accountable daily, and can't really drag family/friends down this crazy path with me....it's moreso my issue and it is too much for them.

I think a lot of us with ME/CFS have this issue anyways.

I may just start posting here, and see if anyone joins in.

But I dunno, I'm less likely to get on first thing and post if I feel like no one is listening, haha. Just wondering who else out there has this issue, and who else is trying to change. Thanks.

 

[CAcfs]

Also, I'm on Pacific Standard time (California), so I think someone in my time zone or close would be ideal....but I dunno, I am desperate, so I would probably compare notes with anyone. I guess we don't need to be on the same time.....

 

[Sushi]

Also, I'm on Pacific Standard time (California), so I think someone in my time zone or close would be ideal....but I dunno, I am desperate, so I would probably compare notes with anyone. I guess we don't need to be on the same time.....

Hi CAcfs,

I think a lot of us have messed up sleep cycles--I do. But I don't really see the need to change it--I just avoid any appointments, etc., until at least mid-afternoon. We may not be able to change this just by training and will-power, cause the cause is physical.

I know some go right around the clock with their sleep cycles. Eventually you get to normal, but then the cycle keeps going and you are out of sync with the world again. I find it is best just to try to adjust the timing of the things I need to do. If I am making appointments or something, I just say that afternoons work better for me.

A group of "normals" just isn't going to work for us--cause they can adjust sleep timing just by slowly changing bed time and getting up time--many of us really can't cause it is a medical issue.

That said, I certainly sympathize!

Sushi

 

[CAcfs]

Thanks. For some reason, I have decided recently to try to change it....because some things like daytime sleepiness are getting worse...though I do agree with you that it's just how we are. For awhile, I was trying to just change my appointments, like you said, but now, prompted by my doctors, I am thinking of trying to actually change it. Like maybe even going to bed at 1 AM and getting up at 10 AM. The docs are convincing me that having my schedule this messed up is actually now a CAUSE of the fatigue, not a result of......I am not saying I believe them at all, but I am desperate and so am willing to try in the off-chance it helps....

....Because right now, one of the main issues I'm having is severe sleepiness when I'm awake, and yes, that can just be from not getting into deepest stages of sleep, possibly from not getting actual light into my retinas which controls wakefulness. In other words, not getting daylight is affecting my waking hours. So I am willing to chase that theory for awhile, see if it actually helps how I feel when I'm up.

 

[CAcfs]

Also, the other interesting thing is that I have gotten myself to a point where my stamina isn't super awful, it's just the feeling of sleepiness that's affecting me, and that screams "sleep cycle issues as cause." SIGH.

 

[ukxmrv]

I'd hate to encourage other patients to try something that may make them much, much worse. My health deteriorates every time I try the early to bed and early to rise regime.

If I go to bed late and sleep late then my all over health and functioing is for me at my (low) optimum level.

Low morning cortisol can mean that it is a huge strain on the body to try and do things AM. This doesn't get any better for me over time.

Maybe you need to change your doctor?

 

[Sushi]

... prompted by my doctors, I am thinking of trying to actually change it. Like maybe even going to bed at 1 AM and getting up at 10 AM. The docs are convincing me that having my schedule this messed up is actually now a CAUSE of the fatigue, not a result of......I am not saying I believe them at all, but I am desperate and so am willing to try in the off-chance it helps....
...

I agree, it is good to try things for yourself and see if they make a difference, but unless your docs are ME/CFS specialists, they may not realize what the problems are. I'd say go by your own experience. You can always change docs if they push you in a direction that doesn't work for you.

Good luck!
Sushi

 

[Grampus]

I've had this problem (delayed sleep phase) for so long now that the daytime sleepiness is just part of my personality. All the doctors I've seen have said something like, "just keep at it, keep going to bed early and waking up early, and you'll get there." Okay, so I've been on the 630am shift at work for... oh... FOREVER. Like 6+ years. I absolutely cannot adjust to it. I feel zonked out most of the day unless I take Nuvigil (or Provigil? some kind of vigil). If left to my own devices, like on a vacation, my body will do it's normal 12pm to 8am sleeping thing and I'll be somewhat okay. However, for everyday living this just DOES NOT WORK.

I'm on Central time so maybe I just need to move to Pacific?

 

[CAcfs]

Either way, I'd still like to try.............Is anyone else currently trying? In all the Facebook DSPS groups, people aren't actually trying to change it (not judging either way, just stating a fact), they are just talking about DSPS. I am trying to at least alter this to the best of my ability but am finding few places for support.

 

[Whit]

There was daily jackhammering next door for a whole year starting last summer, so I was forced to start getting up at 8:30 every morning after having a very late schedule. It sucked. I'm now getting up at 9:30 every morning and trying to keep a somewhat sane schedule, so I get up then even if I'm up late. Well, sometimes I push it to 10.

I have a long night time routine to get me to sleep at 1:30am. Certain things I don't do after 10 (like read this forum, because it can be upsetting), I start my bath by a certain time, then I watch certain TV shows after 11 that are happy and superficial. That 70's Show, Friends and The Office lately. So I am filled with very light, positive energy before bed. Really helps because it's hard to get to sleep with all the ominous and upsetting stuff in my life right now.

 

[Little Bluestem]

I have been slowly working at getting my sleep cycle backed up for quite a while (2 or 3 years?). I have been increasing helping my aging parents during that time, so cannot just sleep whenever I feel the need. I live in a small town where the bank closes at 4, the post office window at 4:30, most of the stores at 5, and the grocery store and dollar store at 9. I can remember when it was a push to get to the bank before it closed. I am now almost always up before noon.

I think what needs to be done is move the going to sleep time back. Getting up early when you haven’t slept enough just adds to the fatigue. To that end I have been:
avoiding caffeine after noon
taking prescription and non-prescription sleep pills
drinking herbal teas for sleep
wearing blue-blocking sunglasses before bedtime - the latest addition and I really like them
listening to a bedtime CD
wearing a sleep mask

I have some CDs that are supposed to promote sleep. I have found that I prefer to listen to my favorite regular music CD. Often just playing the last three tracks will do. If not, I start over at the beginning and am usually asleep before the end.

I tried ear plugs, but they made my tinnitus worse.

There is more than just sleep to circadian rhythms. You have to give your whole body time to adjust to the new schedule. When I am at my apartment, I rarely get up to the bathroom during the night. If I do, it is in the morning not too long before I get up. When I stay at my parents’ house and have to go to bed when they do, I am usually up twice to the bathroom during the night. The first time is about my normal bedtime and the other is early morning.

I am starting to move some of my computer time to the daytime. Part of my problem is getting through everything I want to read on the computer before bedtime. I am aiming for a 1 am CDT bedtime.

 

[CAcfs]

Thanks for the comments. I just read them, but will comment more "tomorrow."

 

[peggy-sue]

I'm a "non-sleeper" rather than a hypersomniac.
I sometimes manage to get myself into a good routine - bed at 3am, up at 11am.
This suits me. I can't do much in the mornings, I seem to get a burst of being able to be active around 4 in the afternoon, although I can start this earlier, with a push.
I find it much harder to pass the time during the day, I can't bear too much tv, certainly not daytime stuff, but I seem to be able to cope with it better late at night.

IF you want to change a sleep cycle, the easiest way to do it is to keep going, to stay awake for a long period until the time you wish to be your bedtime has arrived, NOT to try to go to bed early.
This should set whatever circadian rhythms you may have to where you want them.
It would if you weren't ill.

The biggest problem we have with sleep is the lack of stage 4 deep sleep - this is the wonderful and refreshing stage promoted by lovely, hard physical labour during the day.

 

[caledonia]

Boy can I relate to this. I was one of those whose sleep cycles ran constantly forward, so I never had a set schedule. Here is how I fixed it:

1) Get a sleep study to detect anything obvious. I did and found out my feet were twitching all night long, waking me up a million times during the night. I politely declined a prescription for Xyrem and consulted my naturopath. It turned out, I was very low in magnesium. I now take magnesium glycinate throughout the day and a bigger dose before bedtime. Problem solved.

2) My sleep was still running constantly forward. No doctor had a clue. I tried sleep hygiene, setting the alarm, getting outside for morning light, an Apollo Golite, etc. etc. Nothing worked. Last fall I got very sick for a long time and couldn't be on the computer or watch tv. My sleep cycle straightened out. I did some research and found out that I'm very sensitive to blue light in the evening.

I found some orange blue-blocking sunglasses and voila - problem solved. I wear them from sunset until the time I go to bed. I have also been experimenting with running the GoLite in the morning to reinforce my sleep cycle.

So this is what you want - blue light in the morning to wake up and produce serotonin. Orange light in the evening to feel sleepy and produce melatonin.

3) Be aware that certain medicines deplete melatonin and will screw up your sleep - the two I know of are clonazepam and beta blockers. There may be more. If you're on one of these medicines you need to take melatonin to compensate.

 

[LilacGardenia]

Well, I know this is an issue among a lot of high school and college students. Some of us (especially during summer break) enjoy staying up late, then waking up at like noon time. Of course this has to change before we head off to school, so a lot of people switch their sleep cycle around like the week before school starts. I really don't have a problem with it, I just set my alarm to wake me up earlier, then go to bed earlier (with no electronics.) I also avoid caffine after like noon time because even one cup of caffeinated tea or coffee will keep me up and going for hours. Eating cherries or drinking cherry juice close to bedtime can help because of the melatonin in them.

Once school gets started and all the activities, I don't really have any issues with my sleep cycle, unless I stack my plate up too high or procrastinate. I'm not one of those people, so rarely (if ever) does that happen.

A lot of my friends are night owls, but I enjoy being a morning bird. I find I'm happier and less stressed than my fellow night owls.

 

[CAcfs]

Thanks all.

I think part of the problem IS caffeine, yes. I do drink it a little too late, because I get up so late, and I pretty much NEED it to get out of bed. So need to work on that.

Calcedonia, thanks. I will focus more on the blue/orange light at certain times. I guess I need to get some of those glasses......if you have a site handy, i'd be interested to see it, otherwise, I'll just start googling.

I hate my bedroom, so maybe that's part of it. Everything is cramped. And I don't like having to share a bed with hubby.....and I don't like having to wear the CPAP mask.....all those things make me dread going to bed. I am slowly working on fixing those things, but it involves potential surgery for apnea, and/or cramming another bed in the bedroom, etc etc. Very rough! The mask and the husband keep me from being able to move freely during the night.....

 

[ukxmrv]

LilacGardinia, you may simply lack the typical CFS finding of low cortisol in the morning. One of the reason your night owl fellow students may be feeling more stressed is that they are trying to fit their lives around timing that is not right for them. My family all seem to have this low AM cortisol finding and we are largely night owls. Just an idea.

 

[ukxmrv]

CAcFS, what size bed do you have? We found that buying the biggested bed we could fit into the space made things more comfortable for me. May not be possible of course if you are already cramped but may be better than 2 smalls bed?.

 

[GracieJ]

All my sympathy! Before I was diagnosed with ME/CFS, for many, many years I thought it was just me -- no discipline, or whatever, and would work sooooo hard to get a good schedule going. I would keep it for a while, then it would fall apart. Of course, I blamed myself. I even took a job at 6 am once to prove to myself that I could do it and was not lazy!

For about two years while living in Alaska, I worked extremely hard to get my daily regime back to where I was up and dressed by 9 am. This was during the time when 3 pm was a nice start time for my typical day. It took months to accomplish. For anyone with ME/CFS, it is a huge accomplishment in self-discipline. I sure wish my then husband had recognized how hard I worked to get to that 9 am routine.

These days, I roll with the flow, and sleep just as long as I can every morning before doing anything. Ten am for me is someone else's 7 am, probably. Just not worth the drain in energy to upset the routine, and I find I sleep much better at night if I follow my need for rest into the morning.

I wish I could join your group, but had to get past wanting to change my routine. The jobs I take MUST always start at noon or later.

 

[taniaaust1]

Hi. I used to have about four different issues (at once) going on with my sleep .. one being DSPS/DSPD.

One cfs specialist told me that if one is trying to correct DSPD .. it can be near impossible to bring sleep forward to get back to a normal sleep time but rather its corrected the other way by try staying up a couple of hours later and later each night/day.. until your whole cycle is exactly at the point where you wish it to be.
...............

The issue thou is that those with this issue often cant maintain the time and then end up going back into a cycle which is at an abnormal time. Circardian cycles arent just about sleep but rather about many other things in the body too.. from digestion, hormones etc etc. So even if you do manage to get yourself to the point of going to sleep at a normal time.. the body rhythem of all the other things usually remains still all wrong and not in sinc with things even if you manage to get into the routine to sleep, at time you want.

eg So those with DPSD if forced to go to bed at good times, will even then often still will get bouts of tiredess at wrong times I(even non ME/CFS people) or may not be ready to eat meals at normal times as digestion isnt really ready to at the normal times... etc etc .
Hence many who even do manage to force their bodies into sleeping at right times.. often purposely then allow things to go back to how it was as its just too difficult in various ways (the issue is deeper then just about getting to sleep at the time you want). When one forces ones body into sleeping different hours, one finds that one is now sleeping throu the time in which one felt the most energetic at (this is for the healthies..so worst for us).. and that just dont happen at another time.

You probably cant find many groups trying to change this as most of us have already tried and found even if we forced our bodies to do it how we wanted for a few weeks, our bodies just didnt like it. (I now dont eat well due to it as Im getting up at an earlier time then my body really orginally liked.. and my digestion isnt ready to eat until about 1-2pm... so it takes me a few hours before I can eat breakfast).

best luck with it... The fact your doctors didnt tell you to correct your time by going to bed later and later until you reach the point you want which is what many doctors now recommend, due to it being more achievable to those who have this disorder, may indicate that they actually dont know much about this disorder.

The wiki article on this disorder is actually quite good. I suggest to read it all or scroll down to the Management part and read the Chronotherapy part (as that is how those with this issue get their bodies to go to sleep at a normal time). Those who truely have DSPD just cant just bring regular sleep time forward in other ways then using Chronotherapy Maybe there is a Chronotherapy online group you could join with others trying to fix their cycle http://en.wikipedia.org/wiki/Delayed_sleep_phase_disorder

Id like to add if a persons ONLY issue is DSPD and if that person is allowed to sleep in the cycle his body wants too.. he wont then be be sleepy when he's wake. (so if you've tried going with your body and are still sleepy at the other times.. it would mean you have more then just DSPD going on).