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Anyone else improve at certain times?

Discussion in 'General ME/CFS News' started by Yungas, Sep 17, 2011.

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Do you Improve @ certain times?

  1. The morning is my best time

    2 vote(s)
    5.9%
  2. Afternoon

    6 vote(s)
    17.6%
  3. Evening

    6 vote(s)
    17.6%
  4. Late night

    15 vote(s)
    44.1%
  5. I feel like shit all the time

    5 vote(s)
    14.7%
  1. Yungas

    Yungas

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    Hi just wondering if anyone else improves at certain times.
    Most of the time I will improve a lot after about midnight, my mind fog clears up and my limbs
    feel supple again...In the morning I feel shit again though.

    Do any of you experience something similar?
    Somebody pointed out this may be a hormone imbalance, as if a hormone is switched on at night, which is hopeful.

    Anyone have any more ideas...I may be o to something.

    Cheers. :thumbsup:
     
  2. richvank

    richvank Senior Member

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    Hi, Yungas.

    I think this is caused by a rise in cortisol. Normally, cortisol is high at about the time a person rises in the morning, drops down steadily during the day, and is low during the normal sleeping hours at night. However, in ME/CFS, the diurnal cortisol variation is not normal. It would be interesting to see results of a 24-hour saliva cortisol test on you, to see if it would correspond as I've suggested. Sabre Science offers one through www.directlabs.com, which does not require a doctor's order, and can be done at home and sent to the lab, with results coming directly back to you.

    Best regards,

    Rich

    P.S. I've suggested that the abnormal cortisol variation in ME/CFS results from glutathione depletion in the pituitary, which causes the ACTH secretion to be lowered and to be routed to the constitutive secretory pathway rather than the regulated secretory pathway. The result is lowered cortisol output by the adrenals, and dysregulation of the normal diurnal variation.
     
  3. maddietod

    maddietod Senior Member

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    East Coast, USA
    Rich, do you mean the Adrenal Stress-Sabre Science kit ($198)? I ask because it's difficult to find tests at Direct Labs, and I once bought the wrong one (similar names).

    Do you know how this compares with the DiagnosTechs test that all the naturopaths use? Can I compare results of one with the other?

    Madie
     
  4. richvank

    richvank Senior Member

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    Hi, Madie.

    Yes, that's the one.

    The Diagnos Techs test is a good one, too, and it also includes some other things, which is helpful, but the cortisol sampling doesn't run all night, as it does in the Sabre Science test. I think it's important to know what happens to the cortisol level in the wee hours of the morning. In some people it goes up, and this interferes with sleep. In other people, the HPA axis is operating so poorly that when the blood sugar level drops during sleep, there is not enough cortisol response to bring it up, so a signal is sent to put out adrenaline as a back-up, and this rescues the blood sugar to save the brain, but it can also cause a person to leap out of sleep with a panic attack, which I hear is not a lot of fun!

    I don't know about comparing the levels directly from one lab to another. They may not be standardized the same way. But you can see how the levels compare to each lab's reference range, and also see the shape of the curve over time. These relative features should be comparable from one lab to another.

    Best regards,

    Rich
     
  5. Emootje

    Emootje Senior Member

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    The Netherlands
    I always improve in the evening.
    Besides cortisol, the sympathetic tone (noradrenaline) could be an important player in the day and night variations in symptoms.
    Sympathetic tone is high in the morning and low at night.
    heartrate_and_epinephrine_circadian_881.jpg
     
  6. Boule de feu

    Boule de feu Senior Member

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    Ottawa, Canada
    I can't sleep in the morning. So, I'm always up around 5:30 - 6:30 A.M.
    I have lots of symptoms but they are very manageable.
    I start feeling very sick around 10:30 A.M. and then I spiral downwards.
    I get a bit better after supper but not enough to stay up or do things.

    I've tried to rest more in the morning to see if it would help in the afternoon,
    but it does not matter what I do or how much I do, I get really sick around 10:30 A.M.
    It is so predictable!
     
  7. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    Mine has been linked to cortisol, although I have only had the regular cortisol tests here

    glen
     
  8. mellster

    mellster Marco

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    San Francisco
    I do best either in the afternoon (after quick rest) into the evening or early morning (5-9AM), also around 10:30AM it starts getting worse. The flu-like symptoms when present peak around lunch time.
     
  9. jimells

    jimells Senior Member

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    northern Maine
    thanks for starting this poll. I've long wondered how many folks wake up sick every morning and feel a little better late in the day. I'm staggered to see over 70% reporting 'late night'.

    The frequent migraine attacks almost always start early morning, say between 4 - 7 AM. If they are bad enough to wake me up early, and I force myself to crawl out of bed to take the medication, I usually recover quicker.
     
  10. maryb

    maryb iherb code TAK122

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    Jimells me too - I feel at my worst first thing in the morning, various docs have said its due to toxins building up during the night, as the day goes on we are able to eliminate them and so feel a bit better. I too get the migraines at the same time as you and do the same thing, I know from experience that the pain of getting up to take meds is less than the suffering later on if I don't:( I get worse after late afternoon and can't wait for bedtime most nights, haven't seen 12 midnight for a long time.
     
  11. kaffiend

    kaffiend Senior Member

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    California
    I have a nearly identical pattern. Low-dose hydrocortisone is helping tremendously. This pattern developed about a year into the game for me, so I suspect it results from damage (oxidative stress? virus?) to brainstem neurons in the hypothalamus.
     
  12. I have two peaks, the main one mid-afternoon and a secondary one late night.

    In between, I experience spells of unconsciousness.

    Sleep is something like 1 A.M. till 11 A.M.
     
  13. ty98

    ty98

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    I had my cortisol tested. It was Ok in the morning and noon, but low in the evening and night. This is almost opposite of how I feel, which is really bad usually in the morining. So there is some lagging energy recovery occuring.
     
  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Well, not in any specific short term cycle I know improves things, except as explained below
    but, warm dry weather helps enormously

    and in mornings I feel gawd damn horrible on waking...except if I get woken early and stay awake
    found getting only 5 or 6 hours sleep prevented me from feeling like a damn zombie on waking...but leads ot eventual build up of tiredness resulting in sleeping 16+ hours every week or two :p


    I suspect that "dream sleep" causes stress, my dreams are extremely vivid, screw Hollywood, my dreams are high grade thrills and chills, lol! ;)
    So, that causes stress...and stress makes me worse, so perhaps dreaming is why I get so bad with an 8 hour sleep?
     
  15. Boule de feu

    Boule de feu Senior Member

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    Ottawa, Canada
    Vivid dreams

    My dreams were horrible and extremely violent, but they stopped at some point and I don't know why.
    Maybe it's something I took? Anti-seizure medication? L-tryptophan? Oxygen from the C-PAP machine? or maybe all of them at the same time?
    Anyway, I'm happy now. I don't recall any of my dreams, anymore. I miss the good dreams, though.

    I hope yours will disappear soon.
     
  16. justy

    justy Donate Advocate Demonstrate

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    Hi Silverblade, your description of your dreams sounds just like mine! you are not alone. Vivid, mindbending, nightmareish and exhausting is how i would describe mine, night afetr night after night. Utterly exhausting and stressfull. My theory is that its caused by a lack of stage 4 deep sleep so we get stuck in dream sleep -although i suppose that doesnt explain the vividness or sometimes down right gory nature of mine.
     
  17. Grampus

    Grampus

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    I chose "I feel like shit all the time" because generally I do. However, I do tend to have a little bit more zest for life late in the evening 10-midnight, if I'm allowed to stay up that late (like on weekends.) Since I have to go to work at O'dark hundred in the morning I try to take my sleepytime cocktail around 830-9pm so I can attempt to get some sleep.

    I generally wake up feeling nauseous and head-achey, sometimes to the point of calling in sick. Other days I just go with it and hope it goes away after a while. Around 10am I start crashing. By lunchtime I'm usually passing out at my desk at work. At least I have an office!

    I slog through the rest of the day until mid-afternoon, when I go home. I'm exhausted by the time I get there and have to take a little rest break before resuming any activities. If I sit still for more than 15 minutes I WILL fall asleep. In fact, I have no problems falling asleep during the day, it's just that I cannot stay asleep at night :( and if I don't get any sleep at night then the next day is 10 times worse! Sometimes I get a snowball effect and will have to stay in my house all weekend sleeping in order to catch up.

    Gawd, I hate this CFS! :cool:
     
  18. mellster

    mellster Marco

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    San Francisco
    I wonder why most people's worst time is in the morning - hormones and immune system activity must play a role, it cannot be solely explained with unrefreshing sleep.
     
  19. svetoslav80

    svetoslav80 svetoslav80 at gmail.com

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    Bulgaria
    If I sleep in the afternoon from 2pm to 4 pm my brainfog is significantly cleared after that. But if I sleep during the day I can't sleep at night so I don't do this anymore.
     
  20. HTree

    HTree

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    northeast
    Ah, thanks for starting this poll! Although I am up at 6am, it's because I' haven't been able to sleep yet...
    I usually sleep off and on from 2 or 4am until 3pm. And fall into what is just a "nap"about midnight. I've tried EVERYTHING under the sun to adjust this, but no luck trying to do anything out of bed/horizontal position before about 1pm at earliest. Been this way for several years now (and consulting work/school I was able to do all in afternoon and evening).
    I think it's a matter for me, in part, sleep is just so difficult, it takes so long to get into a decent state-- hot baths for muscle pain, enough energy to stretch etc etc. And sleep is so terribly fragmented regardless, a series of naps really, that unless I try to go to bed while it's still light out, there's no way a morning schedule would work for me.
    Yup, AM has been impossible for a long while--and like others my cortisol chart was abnormally low in Am ad Noon, only to get back to normal at 4pm (just, coincidentally, when I prefer to move about..)
    My family has had such a hard time understanding this (at least, initially-)-- I might have to print this thread "See Fam, i'm not the only one with no control over this lack of AM thing!"

    H-Tree
     

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