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Fatigue: late night or early morning type?

Discussion in 'General ME/CFS Discussion' started by Jonathan Edwards, Oct 6, 2014.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member

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    A simple question from an ignorant doctor. I got up at 4.00 to drive someone to the airport. That set me wondering. Is the fatigue of ME like the end of a long hard day or more like the beginning of a day that should never have started yet? For me the second type is more unpleasant.

    Or is it like neither of these?
     
  2. Sea

    Sea Senior Member

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    More like the early start, only closer to having to drag yourself out of bed after 3 nights of no sleep.
     
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  3. lansbergen

    lansbergen Senior Member

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    ''

    I was always felt better in the evening. The fatique severity had not much to do with it.
     
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  4. Comet

    Comet I'm Not Imaginary

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    I have always been a night owl. 14 years of ME/CFS has made it much worse. Very difficult to function in the morning and I always am wide awake at bedtime, even though I sleep late and go to bed late.
     
  5. Sasha

    Sasha Fine, thank you

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    Good question. I get different kinds of fatigue at different times. When I wake up in the morning my muscles are sore. As the day carries on I feel as though someone has turned the gravity up (I suspect that's my orthostatic intolerance, which affects most of us). If I do some kind of activity and need to rest, my muscles sometimes get that kind of sick feeling that you get with the flu.

    I never feel "good tired" - the kind of well-earned tiredness you get after a long walk where you know it's going to wear off in a short while and leave you refreshed. There's always a sense of illness about it.

    So not the end of a long hard day - more like being woken up hours too early, but that's not exactly it.
     
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  6. Sasha

    Sasha Fine, thank you

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    I think quite a lot of us feel better in the evenings (I do).
     
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  7. Sidereal

    Sidereal Senior Member

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    For me it's more like "getting up way too early" fatigue. Before ME whenever I had to get up in the middle of the night to catch a flight I would have fatigue with that certain sickly quality to it. On the other hand, fatigue at the end of a long day felt more like good kind of tiredness which would sometimes feel almost pleasant. I never get the latter kind of fatigue with ME.
     
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  8. Ecoclimber

    Ecoclimber Senior Member

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    Personally, I dislike the use of the word fatigue or tiredness to describe ME/CFS as it really doesn't get to the heart of the issue. There are subtle nuances to these words in the vernacular, which takes on different meanings to different people based on their preconceived biases or prejudices. Those words are often thrown back at the community by those in the medical field, media etc. with the dirisive statement that everyone gets tired now and then and can be equated with malingerers

    The descriptive word that I would use is a total lack of energy production. An analogy would be similar to driving a car on an empty tank of gas. Stepping on the gas pedal or throttle, nothing happens...no energy. There is nothing there. It is more descriptive of what is happening biologically and is the feeling many patients describe...driving on an empty tank of gas (petrol).

    Crashes can be describes as a sudden feeling of debilitating weakness, overwhelming exhaustion, and reduced or non-existent energy production followed by sensory overload.
     
    Last edited: Oct 6, 2014
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  9. Nielk

    Nielk

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    For me, the fatigue is more like I have just gone through a ten mile hike, although I am just laying in bed. It's a feeling of being heavy like lead and too weak to lift oneself up.
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    For me it is more like an illness feeling than anything I remember as fatigue. Kind of feeling like I am in a dangerous physical state where even walking across the room would have bad consequences. There are difficult-to-describe feelings in the head, chest and legs. If I take my BP at such a time, my diastolic is usually raised and systolic lowered.

    The only thing that helps when I am feeling this level of "fatigue" (for want of a better word), is lying down and not moving--at all--except to drink something like Pedialite (electrolyte solution). If I do this, it will pass in a couple of hours and I'll be able to walk a bit, get ready for bed, whatever. But at those times (only happens now if I have done something foolish like go way past my energy limits) I couldn't even manage to do something like heat up some soup. There is a definite feeling when it has passed.

    The last time I got into this state I had been carrying a fairly light bucket of small rocks (arm exertion is not good for many of us). I needed to carry it about 100 yards but halfway there I had to sit down, wait, walk 5 feet, wait, etc. (I abandoned the bucket!)

    Sushi
     
  11. Gingergrrl

    Gingergrrl Senior Member

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    For me, fatigue is not really the right word either b/c I feel it does not encompass the total picture of ME/CFS. Back when I was healthy and working full-time, there were times I would get very little sleep (maybe 2-3 hours) and have to go to work the next day. I felt fatigued at that time but I was able to push through it b/c I was healthy.

    For me now, the biggest cause of fatigue is due to the autonomic problems. My BP and heart rate were totally out of whack causing exhaustion, shortness of breath with literally any exertion, and the inability to walk more than a few feet. I also would often get a "Sickly fatigue" as if I had a severe flu or mono. I would be freezing cold/chills even if it was warm outside.

    In general, I feel better at night than in the morning but this is not 100% of the time.

    ETA: I think the best way to describe it versus "fatigue" is the feeling that the body can no longer create energy on demand.

    and @Sushi, why were you trying to carry a bucket of rocks?!!! :jaw-drop:
     
    Last edited: Oct 6, 2014
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  12. Countrygirl

    Countrygirl ME is not MUS

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    I don't believe that 'fatigue' is the correct term...............although I have never found a word that that does convey the feeling of profound exhaustion that accompanies the illness. I never experienced this type of 'exhaustion' when well. I would describe it as a power failure, not fatigue.

    The only time that I have had a similar experience was when I took statins. Within a short time they created a 'power failure' of the type that resembled ME. I understand that they block CoQ10, so maybe this is involved in the illness too.
     
  13. golden

    golden Senior Member

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    Neither.
     
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  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    New house, working on a French Drain--trying to be "independent" and do things myself! (Which is often a road to ruins for us.)

    Sushi
     
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  15. dancer

    dancer Senior Member

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    Before ME, I experienced various sorts of fatigue. The fatigue of interrupted nights with each new baby. The fatigue of eight hours of intensive ballet dancing until every muscle turned into a noodle. The fatigue of jet lag when traveling internationally. The fatigue of recovering from a flu. Normal life, nothing to complain about.

    That's one of my frustrations of trying to be understood. I remember "normal" and this is NOT it.

    The ME "fatigue" is unlike anything I'd experienced before.

    I believe it's the ICC that uses the term "Post Exertional Neuro-immune Exhaustion" (could be forgetting here) and I think that's a bit closer. It's a bone-weary exhaustion (often from ridiculously small efforts or activities). In my case, I'm never sleepy or that delicious healthy "tired" - instead there is a burning/itchy/twisting misery that feels like it's INSIDE my bones. There is the weird yucky feeling of the last time I had a high fever (I've had no fevers since ME began, but I remember my last 103 fever, and it feels a bit like that) - that pressure in the head...throbbing bones. Mentally and physical spent. Not a peaceful tiredness but a miserable "not right" inability to function.

    Sometimes when I absolutely have to push past my limits, I can ride an adrenaline "wave" for a bit to do what's needed, but I can feel the "crash" coming on--the throbbing that begins creeping up my spine. The waves of faintness and nausea (yes, I also have POTS), the limbs feeling "bloodless." I lose words... can't name nouns and end up pointing and saying "that thing" instead of "book" or "cup."

    Hope that description adds a bit to the discussion. Others have said it better. :) Thanks for asking. I appreciate your curiousity and interest so much.
     
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  16. Mij

    Mij Senior Member

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    I start feeling more energy after 6pm providing I got adequate rest throughtout the day.

    I would describe the "fatigue" as, I just want to lie down and put my eye covers and ear plugs on and be left alone unitl my energy comes back. I don't want to deal with anything. Early in the illness (23yrs ago) I stayed lying down most of the day/evening.
     
  17. SDSue

    SDSue Southeast

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    For me, it is neither.

    The best depiction of how I feel is from a show in the US called "Naked and Afraid". Two people are dropped in extreme environments, such as the Amazon, without food, water, or clothing. They have 21 days to survive until they are rescued.

    After several days without food, water, or shelter, all the while working hard to try to obtain these things, their bodies literally shut down. Many of them are left lying on the ground, unable to perform the simplest of tasks or converse coherently. When they try to walk, they are shaky, uncoordinated, and collapse easily. They complain of severe headaches and confusion. Once fed or hydrated, they spring back to life quickly.

    The first time I saw that show, it was an "Aha" moment. My body seems incapable of processing food into energy or water into hydration.
     
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Good point about not feeling sleepy or "healthy-tired." In fact the deeper I get into "Post Exertional Neuro-immune Exhaustion," the harder it is to sleep. In fact I don't remember ever feeling sleepy in the last 8 years.

    Sushi
     
  19. DanME

    DanME Senior Member

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    Usually, when I wake up in the "morning" (more likely at noon), I feel a total lack of energy, a bit confused and the brain fog is really heavy. After awhile (usually an hour) my body starts to get ready and I feel more like a normal person again. The feeling reminds me a bit of the foggy, confused state, you are in, if somebody disrupts your deep sleep in the middle of the night. You need one or two minutes to get a clear mind. But since I have full blown ME it lasts for hours. I often wondered, if this feeling is caused by the lack of cortisol in the morning, since I learned cortisol is the "get ready for the day" hormone and e.g. releases sugar into the blood stream. My cortisol curve is clearly inversed (I got it tested twice). If I wake up very late, this special confused fatigue doesn't happen. Maybe more cortisol? If I try to push through, I get really bad episodes of PEM later. So I try to avoid that and just listen to the radio, while I lie in bed.

    The exhaustion and fatigue from PEM feels very different. More fluish and sticky. My whole body feels like I am going to develop a heavy flu (especially in the muscles and in my head). PEM is usually combined with hurting lymph nodes in my neck. Maybe a rush of cytokines? Or Microglia activation??

    At late evening I usually feel a lot better and sometimes even my OI symptoms vanish totally. The good kind of fatigue (like this warm, tired feeling I had after sports, before ME) I only get very rarely. Maybe twice a month. It feels good and normal and I quite enjoy it. It usually comes at late evening after a quiet day with no PEM.
     
  20. Scarecrow

    Scarecrow Annie Gsampel

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    To borrow a line from Shakespeare, let me count the ways. For me, there is no one type of fatigue. I've experienced most of what has already been described.

    There's the one that you already got perfectly
    .
    Fortunately, this is very much an on-off state for me now (mostly off) but it was much more of a constant when I worsened suddenly at 21 following a respiratory infection. For me this is the typical ME fatigue.

    The next most typical is the 'getting up in the middle of the night without having had a proper nights sleep for days' feeling - with the sick to the pit of my stomach quality like Sidereal. I interpret this just as it feels - a lack of good quality sleep.

    Ecoclimber's accelerator pedal resonates with me as well - it's how I often think of it. Ever driven one of those old Ford Fiestas that had a flat spot and died on you briefly about a third of the way down? The ME flat spot starts at the top and goes ALL the way down.

    I'm not sure if fatigue is an appropriate description for this next one. It's the feeling of being in a permanent semi-stupor, of not being completely conscious. It isn't the confusion of brain fog but it isn't too dissimilar either. It's one of my top three ME hates.

    The 'honest' tiredness after a hard day's work is something that I almost never have. The tiredness tends to get bypassed as I head straight for exhaustion and a compensatory wired feeling. Until a couple of years ago I wondered if I imagined that really cosy sleepy feeling that I thought I remembered up to my late teenage years, it had been such a long time since I'd experienced it. Then I took some methylcobalamin for the very first time - and within half an hour I was in a state of absolute bliss.
     
    Last edited: Oct 6, 2014

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