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ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
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Who's trying to get to bed and get up earlier??

Discussion in 'Lifestyle Management' started by CAcfs, Aug 22, 2012.

  1. IreneF

    IreneF Senior Member

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    I have always been a night owl and it got much worse w/ CFS. I take trazodone and sometimes rozerem for sleep, but the new normal bedtime is hardly ever earlier than 2 AM. It doesn't matter too much these days bec. I'm too sick to go anywhere most of the time.

    I like the blue light/orange light idea. It's something to keep in mind. What can you do if you already wear glasses?

    Thanks,

    Irene
  2. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    The last I read, the recommendation was to move the sleep and wake times forward three hours a day. My responsibilities to my parents do not allow me to do this. For anyone who can do it, it is the best way to shift a sleep cycle.

    For moving backwards the one hour that occurs with the change from Daylight Savings Time to Standard time, I have read to move the sleep and wake times back 15 minutes every three days. I do not know if it would work for a more than one hour change, nor do I have the discipline to do it.

    I just sort of gradually and irregularly move my sleep time back, then sleep until I am reasonable rested (unless I have to get up for something). Eventually the earlier sleep time 'takes' and I start waking a little earlier. I have move it back about 4.5 hours in 2 or 3 years.

    I do have problems with my bladder and digestion. Going to bed too much earlier causes me to need to get up and go to the bathroom during the night. I know that my body is 'really awake' in the morning (or whenever) when my bowels move. I have to be careful what I eat during the first part of the day, eating small amounts of easily digested food.
  3. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    You can get sunglasses that are made to fit over regular glasses. Some of them have blue-blocking amber lenses. The brand I buy is Solar Shields. I have purchased them at Walgreens and K-Mart. I have seen Cacoons brand in the Support Plus catalog.
    taniaaust1 likes this.
  4. August59

    August59 Daughters High School Graduation

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    Upstate SC, USA
    My sleep pattern is messed up because my cortisol rythum is messed up. My 24 hour cortisol is very low at 8am. From 8am until 12pm it rises to right at the highest level within normal range and it stays at that level all the wat through 12am. So, somewhere between 12am and 8am it takes its dive.

    I usually fall asleep about 2am and get right back up at 7am. I'll fall back to sleep at 12pm and will sleep till around 3pm. It has been shifting more towards going to bed later, around 4am, lately. I thought about trying to use adrenal extract in the am and try to get a quicker boost in cortisol and take phosphatylserine in the afternoon and evening to try and push my cortisol down some during that time period. It will have to wait as Im not funded for any supplements at all right now.
  5. ukxmrv

    ukxmrv Senior Member

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    That's really rough August59. When I took P-serine it did feel as if my cortisol went down the next morning. I'me already low (like you) so it was bad for me. I have used it at night on those very few times I get that overhyped feeling though. What I need to experiment doing is to take it earlier and see if the morning effect is any better.

    Quite understand about the lack of funds to buy further supplements.
  6. health_seeker

    health_seeker

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    Hi:

    I haven't posted for a long time because the new upgraded website won't work with my screen reading software. My husband is actually posting this for me because I can't post from my machine.

    CACFS: I can really sympathize with your struggle to get up early and establish a regular routine. Like many people with my disability (I've been blind since birth and only have pinhole light perception), I've also struggled with keeping a regular sleep pattern. I think it's really important that you do what works and feels right for you. In my case I feel much better on a regular schedule as it helps give me a sense of well-being and of being part of the world. When I'm not on the same routine as other people around me I feel anxious, disconnected, and disoriented.

    It sounds like you have some very different challenges to me so I don't know how relevant my strategies will be for you. But if it were me in your position I would first tackle some of the things you mentioned were causing problems for you like being comfortable with your bedroom and having enough room in bed before attempting any big changes to your schedule. The last thing you want to do is set yourself up to be disappointed in yourself. Whenever this has happened to me it's always been followed by a relapse in my symptoms.

    Having said all that, I have made a huge amount of progress in the last twelve months. This time last year I thought I'd never work again and now I'm volunteering two full days a week and commuting over an hour in each direction by bus and train. An important part of my progress has been figuring out how to get 8-9 hours uninterrupted sleep at a consistent time every night. My biggest problem has been waking up and not being able to get back to sleep. This is what I've done:
    1. Balancing my hormones -- particularly being on the right amount of adrenal support, estrogen and progesterone.

    2. Taking in enough salt during the day especially in hot weather so that I retain my fluid and am not up all night going to the bathroom and having muscle cramps. In hot weather I take a teaspoon of sea salt dissolved in water on waking and then another teaspoon of sea salt in a drink an hour later and I find this helps me function much better in the morning. I will also take an additional 1-3 teaspoons of sea salt throughout the day depending on how hot it is and how much I'm sweating.

    3. Using a combination of prescription and non-prescription sleep aids: 1.5 mg time release melatonin an hour before bedtime and another 1.5 mg in a sublingual tablet just before I go to bed. Revitalizing Sleep formula. It's a combination herbal supplement which doesn't do a lot by itself in my opinion but definitely helps when I use it in combination with other things. If I'm feeling like I'm not going to fall asleep at my usual time I will dissolve a quarter of a 10 mg Ambien under my tongue. Taking it this way seems to get it into my system much more quickly and I don't need to take as much as I do when I just swallow the tablet. I will also do this if I wake up in the night for more than 15 minutes and it's more than 4 hours before the time I get up. Even doing all this I still find that 8 hours isn't always enough sleep for me. Once or twice a week I take 3-5 mg of Remeron (Mirtazipine) and this makes me sleep for 10 or 11 hours. I do feel a bit drowsy the following day. But on the rrest is very beneficial for me.

    Using these strategies, My sleep isn't perfect and I still have a few nights where I wake up and can't go back to sleep. But most mornings I am able to get up at between 6 and 8 AM and stay awake for the whole day. If it's any help to you CACFS, I am also on Pacific time and would be happy to offer you support in any way I can. I've been away from my volunteering for the last couple of weeks as my family have been visiting. Tuesday will be my first day back getting up at 6:00 AM and doing a full day. Even though I've shown myself I can do it, a part of me worries that I won't be able to do it this time. So maybe we can offer one another mutual encouragement. Feel free to email me off list if you like.



    et up early and establish a regular routine. Like many people with my disability (I've been blind since birth and only have pinhole light perception), I've also struggled with keeping a regular sleep pattern. I think it's really important that you do what works and feels right for you. In my case I feel much better on a regular schedule as it helps give me a sense of well-being and of being part of the world. When I'm not on the same routine as other people around me I feel anxious, disconnected, and disoriented.

    It sounds like you have some very different challenges to me so I don't know how relevant my strategies will be for you. But if it were me in your position I would first tackle some of the things you mentioned were causing problems for you like being comfortable with your bedroom and having enough room in bed before attempting any big changes to your schedule. The last thing you want to do is set yourself up to be disappointed in yourself. Whenever this has happened to me it's always been followed by a relapse in my symptoms.

    Having said all that, I have made a huge amount of progress in the last twelve months. This time last year I thought I'd never work again and now I'm volunteering two full days a week and commuting over an hour in each direction by bus and train. An important part of my progress has been figuring out how to get 8-9 hours uninterrupted sleep at a consistent time every night. My biggest problem has been waking up and not being able to get back to sleep. This is what I've done:
    1. Balancing my hormones -- particularly being on the right amount of adrenal support, estrogen and progesterone.

    2. Taking in enough salt during the day especially in hot weather so that I retain my fluid and am not up all night going to the bathroom and having muscle cramps. In hot weather I take a teaspoon of sea salt dissolved in water on waking and then another teaspoon of sea salt in a drink an hour later and I find this helps me function much better in the morning. I will also take an additional 1-3 teaspoons of sea salt throughout the day depending on how hot it is and how much I'm sweating.

    3. Using a combination of prescription and non-prescription sleep aids: 1.5 mg time release melatonin an hour before bedtime and another 1.5 mg in a sublingual tablet just before I go to bed. Revitalizing Sleep formula. It's a combination herbal supplement which doesn't do a lot by itself in my opinion but definitely helps when I use it in combination with other things. If I'm feeling like I'm not going to fall asleep at my usual time I will dissolve a quarter of a 10 mg Ambien under my tongue. Taking it this way seems to get it into my system much more quickly and I don't need to take as much as I do when I just swallow the tablet. I will also do this if I wake up in the night for more than 15 minutes and it's more than 4 hours before the time I get up. Even doing all this I still find that 8 hours isn't always enough sleep for me. Once or twice a week I take 3-5 mg of Remeron (Mirtazipine) and this makes me sleep for 10 or 11 hours. I do feel a bit drowsy the following day. But on the rrest is very beneficial for me.

    Using these strategies, My sleep isn't perfect and I still have a few nights where I wake up and can't go back to sleep. But most mornings I am able to get up at between 6 and 8 AM and stay awake for the whole day. If it's any help to you CACFS, I am also on Pacific time and would be happy to offer you support in any way I can. I've been away from my volunteering for the last couple of weeks as my family have been visiting. Tuesday will be my first day back getting up at 6:00 AM and doing a full day. Even though I've shown myself I can do it, a part of me worries that I won't be able to do it this time. So maybe we can offer one another mutual encouragement. Feel free to email me off list if you like.
  7. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I'd been a nite owl my whole life. Yet starting a month or two ago, I've been going to bed early, and actually looking forward to it. Still, I usually wake up after four hours. If I use exercise to tire myself out, then I get five straight hours before waking. A total of seven hours is a good night.
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    When you wake up after 4 hours, have you tried getting up, eating and doing quiet things for a couple of hours, then going back to bed? I have read that was done in the past, but did not keep any notes. It was called first sleep and second sleep. I once came across a reference to second sleep in a novel - by one of the Bronte sisters, I think.
  9. taniaaust1

    taniaaust1 Senior Member

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    I too used to do the same as the poster above at one point.. and found that to be far better then laying in bed just trying to get back to sleep. When I ended up going back to bed after quietly doing things for a while, it was far easier to get back to sleep.
  10. Enid

    Enid Senior Member

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    Sympathies with all who have sleep problems - a twelve yearer now and do tend to go to bed earlier than before and rest in the afternoon as energies allow (rather bod dictates). The deep sleep cycle missing earlier on has returned at last. My brother (Prof Neurology) advised when tired "don't resist it". But wired and tired does need looking into.
  11. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Thanks, Bluestem. In fact, it had happened enough times that I'd tried everything. That insomnia was new to me and I describe it as ferocious. Trying to go back to sleep was impossible, as if a hard chemical switch had been flipped on. Eventually, I settled on the habit of listening to medical lectures for an hour (or 2 or 3 as necessary). Youtube even has a spoken wuthering book.

    Sleep has suddenly gotten better most nights these past weeks, since starting the baking soda. Coincidence? I don't know - but I will test that.
  12. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    yep, get it whenever you can. I also find that at about 2 hours after exercise, sleep is imperative to clear out whatever had built up.
    Enid likes this.
  13. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    I have tried but no success, I'm just cant sleep much. I have tried using Melotonin which helps me fall asleep but I only stay asleep mayb 15-30 mins then awake again.
  14. SickOfSickness

    SickOfSickness Senior Member

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    I definitely believe most of us have our cortisol being released at wrong times, and we have a lot more difficulty changing our sleep times. It is so common for us to not fall asleep until sunrise. I think I have DSPS. I usually go to bed around 3 am, then a few days later it's 6 am. It stays around sunrise for days, but then it will get later and later, and I'll be forced to push forward. So I will go around the clock until I get to 11 pm, but it won't stay and goes to 3-6 am. My main problem is falling asleep. I don't have much problem with staying asleep. I am bad about waking if I have not gotten a good 9 hours.

    Sometimes I feel that I've tried my best for many days, with little result. When I struggle to change my sleep, I usually feel worse for days. However, twice I've had some multi-day event coming up and I was very motivated to change my schedule for it. I succeeded pretty well both times. I don't feel like I was lazy before, when I tried and couldn't change, but this helps show me that it's possible, when I try very hard, because I want it more than anything else.

    Then the problem is, I will usually not maintain the new schedule. I am not sure I can maintain it without help from someone who lives with me. Once I have woken up in the morning a few times, after the difficult days, it starts feeling good. I would love to see how I feel after consistently waking in the morning for 4 weeks or 4 months. I think it would help me.

    Soon I will be changing my schedule again. I am not looking forward to the first 2 or 3 days. If I don't have enough days to go forward around the clock, or if I can't because I have obligations, then I usually have to deprive myself of sleep for 2 or 3 days, getting about half my normal sleep. Without getting too little sleep, I won't succeed. When depriving myself of sleep, I have to use mild stimulants like chocolate to keep myself awake. I have to be very careful of all the foods, drinks, supplements, everything. Especially in the 5 hours before bedtime. Some supplements are wake producing and need to be first thing in the morning. I take melatonin for the first 3 days. I would like to take it more, but I get problems. I have to get out in the sun multiple times, and I think it's necessary to skip sunglasses for better effect. I try not to get blue light for hours before bed. For whatever time is my goal for wakeup, I have a clock lamp that simulates sunrise which helps. It helps me a lot if someone can wake me up - if not, I need 2 very loud alarm clocks. It helps me to have someone else around, who falls asleep when I am supposed to. I also do more physical activity (except the first days with sleep deprivation), so I am tired at bedtime.
  15. SickOfSickness

    SickOfSickness Senior Member

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    I agree with Tania's post too.

    I think it's like taking a healthy person and making them work night shift. I think we get benefit from the day schedule, but we have new difficulties. I still want it, to be like most people in the world. If we make the shift for more than 3 months, I hope it gets easier. It's supposed to take 3 whole months in a row to really be changed. 3 weeks it starts to take hold but that is just a start.
  16. taniaaust1

    taniaaust1 Senior Member

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    Unfortunately most of us find that it dont get easier after 3mths (if one can keep it up as long as that), most find its still taking drugs and everything.. to stay at the time one worked so hard to get happening in the first place... the circardian rhythm thou sleep has been enforced.. still "may not" follow suit at all. The whole thing can be so very frustrating.

    *note ..Im refering to specifically DSPS (DSPD) with my post and not refering to just insomina in which a changed regular routine can often help.
  17. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Let's see... it's said that normal people might have health risks (like cardiac problems) when working night shift. That might be because they are forced to stay active when their normal rhythms and hormones are saying it's time to sleep.

    But if a person with insomnia has their rhythms and hormones shifted timewise, then in an ironic reversal it might be theoretically possible that they can be causing harm by forcing sleep at regular hours. Just thinking out loud.
    taniaaust1 likes this.
  18. SickOfSickness

    SickOfSickness Senior Member

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    I think so. But I think every way is bad for us. Sleeping until afternoon is just the easiest of the bad choices :(
    taniaaust1 likes this.
  19. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I think my physician and dietitian may have both told me to go to bed at 9 pm because people get the most restful sleep between 10 pm and 2 am. I'm thinking maybe 'people' do, but those are some of my most wakeful hours. I probably slept best shortly after my natural go-to-sleep time. Unfortunately, I think that my attempts to change my sleep cycle/circadian rhythm has got them totally disrupted and I am not sure there is any time that I would sleep really well now.
  20. Hi All,

    I have so much to say about DSPS. I've been told by doctors and psych. docs that it "doesn't exist" and for me, it was a very early syptom (or cause) of all my issues. Either in itself or how I was encouraged to"treat it". BUT I don;t want to rant, I want to share a cool app that helps with the blue light/orange light issue by changing your computer display settings in synch with the sunset in your location: F:LUX

    On the site, it says:

    It's free, I love it. Remember to disable it if you are a photographer/graphic designer and are doing image colour correction!

    Available for Mac/Win/Linux/iPhone/iPad.
    Little Bluestem likes this.

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