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Post-exertional malaise or not?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by A.B., Jun 1, 2013.

  1. A.B.

    A.B. Senior Member

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    I do experience a malaise after exercise or stress, but I'm not sure if it would be classified as post-exertional malaise present in CFS. I'm interested in how others experience it so I can better understand what's going on.

    A description of how I experience it follows:
    I'm reluctant to initiate physical activity, but once I get going, it does feel good.

    Somehow I don't tolerate exercise well though, because afterwards or even during I will suddenly notice that I'm starting to feel worse. I'm unable to recognize that I'm going over my limits. I simply don't feel that anything is wrong until it's too late.

    It is not just physical activity, anything that requires concentration, is stressful or exhausting can cause it.

    The explanation that appears to explain these observations best is that my anti-oxidant reserves are low and thus any form of stress can cause harmfull oxidative stress after the anti-oxidant reserves have been used up (this is pretty much the methylation problems theory as far as I understand it).

    What the malaise feels like?

    Rapid drop in body temperature (this goes away after a nap)
    Sudden feeling of intense stress, unease, and depression and generally feeling miserable.
    Loss of productivity and ability to concentrate.
    Pain in the lower back.
    Low energy levels.

    How long does it last?
    It's proportional to the intensity of the activity/stress. Hours to a few days. A negative effect could linger for much longer after intense exertion or stress but I cannot clearly distinguish that from "normal" fluctuations of symptoms (which are presumably already reflecting stressors).
    Allyson likes this.
  2. justy

    justy Senior Member

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    Hi - you describe what i experience very well. Whether this is Post Exertional Malaise or just good old going over the limits malaise is something i am also not sure of. I think most with M.E have what you describe (this is common to many chronic illnesses) but that there is also an element of delay to PEM. In other words i experience all you say above, but also if i push over my limits for a few days, or in one very big acitvity i may not feel the real hit of the malaise until 1-3 days later.

    Confusing isn't it?
  3. A.B.

    A.B. Senior Member

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    I'm not sure if I experience this delayed onset of malaise.

    It is very clear though that the malaise can sneak up on me slowly over days, rather than hours. It is not unusual that I have, say, two weeks where I'm more productive than normal and can handle my responsibilities better, followed by several weeks of higher than normal malaise. It's like I'm accruing debt on the biochemical level which eventually forces austerity on the body.

    Stimulants in particular lead to the above, so they must be used very cautiously.
    Allyson likes this.
  4. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Yes, my rendition of PEM was like being poisoned. And the onset was delayed, as with DOMS.
    meandthecat and Allyson like this.
  5. Ember

    Ember Senior Member

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    This definition of PENE may help you:
    Allyson, ahimsa, A.B. and 1 other person like this.
  6. A.B.

    A.B. Senior Member

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    I don't have acute flu-like symptoms nor acute pain though. At most a mildly painful strain in the lower back.

    Interestingly, since since I fell ill 13 years ago I'm nearly immune to acute infectious disease and never have fever.

    The rest sounds more or less like what I have, though recovery usually doesn't take that long.
  7. Tristen

    Tristen Senior Member

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    AB, your giving a pretty good description of PEM. It's always been very hard for me to determine boundaries because they are not constant. I too feel better during exercise, but it's what comes after that sucks.

    I despise the word "malaise" because it doesn't come anywhere close to describing what it actually feels like. I like the terms "Post Exertional Relapses or Crashes" because for me it's basically an exacerbation in severity of the usual symptoms. I would describe PEM as feeling poisoned. Physical exertion is by far the worst. Mental or emotional stress is next. In the past, infections or getting too hot would cause crashes as well. No longer have those.

    I used to have delayed onsets, but that's not always the case now. My PEM has changed in how it presents based on the level illness I'm in at that time. At my worst, it took very little to set it off, I would have up to 24 hour delay onsets, it would take weeks, and at times months to come back out of it. At my best (currently), it takes a lot more stress to set it off, and when I do it most often hits me right away and is not completely delayed.......and I will recover that same day.

    It can also be cumulative. The amount I do today may not be too much....the same may true for tomorrow and the next day doing the same amount.....but then on day four doing the same amount, I will crash.
    Moxie and justy like this.
  8. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Napping within an hour or two after exercise is almost mandatory for me since getting sick. It's as if whatever needs clearing out gets cleared out best during sleep, even a brief one.
  9. Mij

    Mij Senior Member

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    Interesting. Sleeping or napping never makes a difference whatsoever with me, only time does.
    Tristen likes this.
  10. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    I don't really get PEM anymore. But the urge to nap after exercise is very powerful. In fact, I'm doing a baking soda and exercise test right now, typing between sets. Normally, within an hour or two I'll feel it really come on. But I'll see if the baking soda makes a difference today.
  11. Mij

    Mij Senior Member

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    What does the baking soda do?
  12. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    It counters the lactic acid that results from exercise. It has helped me in recovery. It's also used by non-CFS athletes.
  13. Ember

    Ember Senior Member

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    Acute flu-like symptoms and pain are examples of postexertional symptom exacerbation.
    A.B. and Tristen like this.
  14. Mij

    Mij Senior Member

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    The article you provided says "compulsory". I'm guessing it refers to a diagnosis of CFS and not necessarily all the symptoms listed for PENE.
    Allyson likes this.
  15. Ember

    Ember Senior Member

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    The definition of PENE is from the ME Primer. (The link is inserted.) "Compulsory" means that PENE is required for a diagnosis of ME. Each of the points listed is part of the definition, but acute flu-like symptoms and pain are described as examples of postexertional symptom exacerbation, so they are not required.
    A.B. likes this.
  16. xchocoholic

    xchocoholic Senior Member

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    I can do pretty much whatever I want to within my physical limitations (old age and orthostatic intolerance) unless I have PEM. If I have PEM, I'm camped out on the sofa, mostly zonked out. AKA MALAISE ... Even cutting my food with a knife is risky at that point. :eek:

    I can actually play in the surf at the beach for 30 minutes easily for a day or two in a row but crash within 24 - 48 hours afterwards with PEM. I'm not exercise intolerant tho because after a few more weeks, I'll be up to an hour. Or at least I did that last year. Also, after resting up a bit I can go back out in the water and do it again.

    By definition, PEM is not a reaction to excercise but a malaise that comes on 24 - 48 hours post exertion. Pacific Labs tests for this. If you look at how they run their tests it might help you understand PEM.

    IMHO, it's best not to confuse lack of ability to exercise with PEM. It won't help you figure out why you can't exercise.

    I'm sure you can find a list of possible reasons for exercise intolerance on the web. Or if you have a good doctor, ask them to run some tests for you. You may just be low on iron, B, etc etc ... Low iron and h pylori both made me too exhausted to exercise.

    Tc ... x
    Allyson, Sherlock and Tristen like this.
  17. Ember

    Ember Senior Member

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    Which definition of PEM are you using? Here's the definition of PEM and/or Fatigue used by the CCC:
    And here's an expanded description of Post-Exertional Malaise and/or Fatigue from the ME/CFS Guidelines:
    The CCC test for PEM and/or Fatigue is “Cardiopulmonary Exercise Testing: AMA Guide for Evaluation of Permanent Impairment. Lower cardiovascular and ventilatory values exercise help determine functional dapacity, and peak oxygen consumption levels determine disability categories.” That test isn't the same as the 2 consecutive day exercise stress test used by the Workwell Foundation under Staci Stevens.

    Here's the ICC test for PENE from the ME Primer:
    The Pacific Fatigue Lab recently shut down their program for this testing, leaving the Workwell Foundation to take up the cause.
  18. xchocoholic

    xchocoholic Senior Member

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    It's called "post exertional" because it's after someone has exerted themselves. Not during. Exercisr
    intoleralnce is the term for problems trying to exercise. Pacific labs explains this.

    This symptom may he harder for someone to recognize if they are sick all the time. I used to be sick
    all the time until I eliminated all toxins from my diet. Esp gluten tho. I'm gluten intolerant with
    Celiac disease (controlled via diet but damage may be permanent), hashimoto's (have antibodies but other labs are "normal") , gluten ataxia (resolved via diet), leasions on brain (resolved via diet), seizures, and no telling what else gluten did to me. Google theglutenfile.
    I suspect my left bundle branch block (lbbb) is from gluten too since purkinje cells are involved in both ataxia and lbbb/

    Now I just have constant orthostatic intolerance (oi) and pem. Dr peckerman explains how pem can be
    from oi. Google peckerman cfs. I have a heart condition, left bundle branch block, and lung scarring that may be causing my oi.
    Or my oi could be from the brain damage that occured from gluten. Or ?

    My definition is several years old so I don't know where I got it. Hth .. X
    Valentijn likes this.
  19. Ember

    Ember Senior Member

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    You wrote that "by definition, PEM is not a reaction to excercise but a malaise that comes on 24 - 48 hours post exertion" and that it isn't exercise intolerance. But that definition isn't consistent with the CCC. According to the CCC, PEM and/or fatigue “may occur immediately after activity or be delayed.” Neither is it consistent with the ICC that describes the 2 consecutive day exercise stress test as an “exercise tolerance test with expired gas exchange.”

    Pacific Labs no longer offers that exercise tolerance test, and Staci Stevens, who is now testing through the Workwell Foundation, is one of the authors of the ICC. The ICC uses the term PENE to denote post-exertional neuroimmune exhaustion.

    Dr. Unger complained at the recent CFSAC meeting that PEM is difficult to define. So I wonder what older definition we're using.
  20. xchocoholic

    xchocoholic Senior Member

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    This person is describing exercise intolerance not PEM here. I was merely pointing this out. Not looking for why they feel this way is non productive.

    FWIW, I really don't care what the CCC or ICC has to say about PEM or PENE. There will be a brand new group calling it something new soon enough. :rolleyes: From what I've seen Pacific Labs explains PEM. I'm assuming their info is still on the web.

    I don't know who Dr. Unger is but if he has CFS patients they can probably explain it to him. tc ... x

    PS. I really don't know how to make this any clearer. If you're still confused, try googling exercise intolerance.
    Allyson likes this.

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