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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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Reversed energy levels!

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by ozikiwi, Oct 5, 2013.

  1. ozikiwi

    ozikiwi

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    Why do I feel better while I'm actually exerting energy than I do if I spend the day sitting around or in bed???
  2. Snow Leopard

    Snow Leopard Senior Member

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    Adrenaline, Dopamine etc?

    I do believe it is worth it to go out regularly and do something that you enjoy, even if it means spending a few days recovering. It is better to have a small piece of normality than none at all.
    PennyIA likes this.
  3. ozikiwi

    ozikiwi

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    Thanks for your input SL.......much appreciated.
    I googled Adrenaline and it made sense to me, but does that mean I don't actually have CFS?
  4. Valentijn

    Valentijn Activity Level: 3

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    If exertion doesn't make you sick immediately or a day or so afterward (usually different symptoms at different time periods), then you don't have CCC- or ICC-defined ME/CFS.

    In that case, you should press for further investigation to look for an alternative diagnosis.
    SOC likes this.
  5. rosie26

    rosie26 moderate ME

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    I have that experience as well. It has baffled me at times. I do suffer payback though.

    I think Snow Leopard is probably right as to what is happening - adrenaline - feels that way to me.

    Just have to be careful with how much you do when you have the adrenaline happening , as I tend to get stuck into jobs that need doing. And end up in an awful crash.
    justy likes this.
  6. rosie26

    rosie26 moderate ME

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    ozikiwi

    I must say you are lucky if your body is not wanting to crash/lay down. I have no choice but to lay down. Would you describe yourself as having mild ME. Are you sure you have the correct diagnosis ? x
  7. ozikiwi

    ozikiwi

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    Thanks everyone for the time & energy to respond to my query!
    I seem to hit multiple walls during some physical activity, but push through. It usually results in immediate lethargy that only seems to last a coupla hours. Is that CFS-esque?
    And then on a day I do nothing but sit around (eg at a training workshop), I get my usual crash symptoms and just want to lie down. Again, is this CFS or simply blood-pooling?
    That is my conundrum!
    I keep a daily record of my health status, and I seem to crash once a week.
    I also have heart probs, which are being addressed medically, but am never sure if it's CFS causing the symptoms or the heart........aaarrrrrggggghhhhhh!!!!
  8. Snowdrop

    Snowdrop Senior Member

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    It's always difficult to untangle the experience of symptoms to what they might mean when there is no certain diagnosis.
    I will say in response to your query that right before my big crash from which I have only marginally recovered I experienced something like what you're describing. My symptoms had been building for years but they were not always fatigue, more often neurological and cognitive. I think I had been living within my 'energy' envelope naturally for quite a long time. Then when my children started growing and I tried to do things to be more active so that I could keep up with them (beyond what I was used to and comfortable with). That's when I noticed what you describe. An inability to do the activity and a desperate need for a nap afterward. Although movement always beets sitting or standing still.
    So to sum. I might have experienced PEM much sooner but somehow knew to work inside that energy envelope probably from early experience without knowing what it was. But as soon as I decided to try and do more (to keep up with my kids) I experienced first mild and then progressively worsening of symptoms leading to a crash. I wish I had stopped trying to push so hard sooner.
  9. Snowdrop

    Snowdrop Senior Member

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    Also, is there a reason that you have taken to sitting around or lying in bed? Is that because of how you feel physically drained if you keep active but you feel better mentally if you keep moving? Depending on what you mean exactly, I think we all feel better when we are active it's just a matter of the 'payback' we get when doing so. Maybe you can explain a little more.
    rosie26 likes this.
  10. ozikiwi

    ozikiwi

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    Thanks SO much for your detailed response, Snowdrop......I'm just sorry my story sounds so confusing......though in reality it's probably just a reflection of where I'm at, at the mo.
    Basically, when I'm doing, I cope.........when I'm having a total bed-rest day, I often feel worse.
    Having said that, I overdid it yesterday and am now convinced I don't have the energy to do everything I want to do.
    My life history tells me I have always been lousy at pacing, so I'll probably keep going till I can't any longer......it's just how roll. But at least I no longer feel the guilt of not working full-time........volunteering part-time is definitely my limit.
    How anyone has cfs AND children to bring up at the same time, defies belief........my hat goes off to you!!
  11. SickOfSickness

    SickOfSickness Senior Member

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    From your last post with more detail, I think that's adrenaline too.

    The problem is you can make your adrenals worse and worse over time and then your energy envelope shrinks. Then you get more and more "payback" or PEM.

    Also it seems that your immune system gets weakened more, so you have the risk of getting some virus and not fighting it well. I think that is one reason someone will have a big crash. They say they get some kind of virus or infection that never goes away, or they never feel better even though it goes away.

    The point being, in my opinion some of us kept going until crashing hard, but it's better to learn not to, so you don't become worse (can be housebound or bedbound).
    rosie26 likes this.
  12. Snowdrop

    Snowdrop Senior Member

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    Good luck to you, however you decide to handle your situation. There is a definite learning curve involved with this illness. And because it's variable/different for everyone it's hard to know what to say by way of help. I don't have access to many treatments so the thing that has really worked for me is what SOS is advising above. Aggressive rest. It is so much harder to do than anyone who is not ill can ever imagine. We are no different from well people in that there are things we wish to accomplish. We want to do, participate, connect. For years I thought I was resting enough (not that I felt any better) but it seemed somehow excessive to rest more when I could get something done. Fear of increasingly poor functioning made me reassess how much rest is enough. It was hard in so many ways. I am recovering very slowly.
    rosie26 likes this.
  13. ozikiwi

    ozikiwi

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    Thank you both SOS and Snowdrop. I value your input and advice......and agree I prob need to be more aware of my adrenal function and resting regime.
    After having 'worked' every afternoon this week at the rest home, I am once again convinced of my limitations......unlike the amount of need going on amongst the poor elderly!
    My current situation of relieving is only temporary..........so with an end in sight, one can do anything.
    I just hope I end up as sensible as you lot with my energy envelope.
    Take care, y'all!
    rosie26 likes this.

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