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Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 29, 2013.

  1. peggy-sue

    peggy-sue

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    Personally, I'd rather risk a pretty massive crash before I'd have a lumbar puncture.
    (Actually, I'm not sure I'd not prefer to die than have a lumbar puncture, but that's just me.)
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I agree with much of what you say, but not all. Some people do not recover from crashes, but become permanently even more impaired. If people are managing part-time work or self-employment, a crash can have a serious impact on income for a person who may already be on the breadline. This happened to me in 2010 when over-exertion caused a crash that landed me in hospital. I ended up building up a large credit card debt which I have only just paid off thanks to maturation of small occupational pensions accrued before I became ill.

    No one has a right to make someone suffer such adversity just to prove that they are genuinely ill (and I do receive two disability-related 'benefits' - the disability element of Working Tax Credit, and a reduction in my council tax, and these have entitled me to a few further benefits such as free medications).
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I replied to your earlier message before seeing this one, SOC. Let me know if you want me to edit it, as I agree with you now! :)
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I have been trying to work out the sequence of events from my own exertion, but don't have time to go through all my notes and do a proper analysis, as I am still having to work self-employed to keep the wolf from the door. It's very frustrating.

    But so far I have observed:

    1. Initial muscle pain that lasts up to about 48 hours, often much less
    2. No obvious worsening on 2nd day
    3. Mild head and neckache, arm muscle tightness, calf muscle twitching, apparent solute diuresis (evidenced by polyuria that does not respond to desmopressin) Mild upper abdominal pain? Looser bowel movements? Swollen cervical lymph nodes and submandibular glands with very pale skin over them? Twingeing maxillary lymph nodes? Itchy and blocked ears?
    4. Poorer sleep, mild-moderate toothache.

    There are other symptoms that I haven't included and I am not 100% sure of the chronological order.

    Possible explanations for some observations:

    • Excess lactic acid production overloads the liver, hence upper-abdominal pain
    • Hyperlactaemia acidifies gut, hence loose bowel movements, possibly including loss of some nutrients that way
    • Solute diuresis involving excretion of excess lactic acid as sodium lactate and other salts
    • Consequent mineral deficiency leading to toothache and poor sleep

    After my first severe episode of hyponatraemia I started suffering dental damage and also had my only-ever fracture, from a minor fall, supporting my theory of mineral loss, hence the fact that I now take a bone mineral supplement. I don't get these severe effects any more.
     
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wouldn't go that far, but I would only agree to a lumbar puncture to diagnose a possible life-threatening illness that needed urgent treatment. It's a dangerous procedure, the after-effects can be very nasty, and if they go wrong (which some do) it can be catastrophic.
     
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I can sometimes react quickly, and sometimes not. If I could always react quickly I would not have broken my wrist in 2008. I could have stopped myself from falling. I would not have sprained my ankle badly on a step more recently. Again, I could have stopped myself from falling. When I am dizzy, or disorientated, or weak, or ataxic, I cannot react on the way I need to, and the same would be likely to apply in a life-threatening situation. Yes - when not already suffering adverse effects from over-exertion, I can - to a degree. But the distance I would be able to run, or, for example, my ability to climb over a fence or up a tree, would be limited by my ability to keep producing ATP fast enough, which would vary according to my state of health but would probably always be less than what it would be without ME.

    I also cannot rescue all the wild animals caught by my cats as I used to, which is upsetting. I even accidentally killed a mouse I was trying to rescue, due to weakness, slow reaction times and poor coordination.

    I had to turn down my brother's invitation to go on his motorbike to see the solar eclipse a few years ago, as I know there was a danger I would not be able to hold on for long enough, so could end up falling into the road.

    This inability to protect myself and others due to my illness is frightening.
     
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I wonder whether blood could be used for a test similar or roughly analogous to that which was conducted on muscle biopsies - subjecting them to the equivalent of exertion in vitro.
     
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  8. alex3619

    alex3619 Senior Member

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    I have been making similar comments. We need more research in this area. This appears to be the case with fibromyalgia, its probably the case for ME as well. We need this investigated.
     
    Sasha likes this.
  9. Firestormm

    Firestormm Guest

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    Me three :) Think we have a couple of threads capturing our thoughts on this kind of testing.
     
  10. SOC

    SOC Senior Member

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    No problem. :) I wasn't clear the first time around, so it's reasonable people would call me on it to clarify.
     
  11. SOC

    SOC Senior Member

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    During crashes I don't have the initial muscle pain, but I do get joint and muscle aches different from overuse muscle pain. They don't usually hit the first day, either.

    Before I cleared my chronic infections, crashes used to give me swollen cervical lymph nodes and salivary glands. In the worst crashes, I'd look like a chipmunk, the side of my face were so swollen. The good news is that now I don't get swollen node and glands with crashes, so I'm assuming that they were related to the infections. The toothache thing also disappeared. Doc and dentist think, and I agree, that the toothache was from swelling in the jaw area, not directly dental.

    I still get the itchy and blocked ears. I'm wondering if it's a histamine thing...

    For me, there's definitely an element of muscle stiffness (probably from lack of exercise) and clumsiness (which could be related to muscle stiffness or neurological problems) that prevent me from being agile and athletic. I've fallen down stairs 4 or 5 times in as many years. :eek:

    Still, if I had only 15 minutes to get out of a burning airplane, for example, I could do it as well as 50% of the other passengers. There'd just be hell to pay later.
     
  12. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Can you point me to any? Not sure if I have seen them or not. Don't worry if you can't find them easily.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think there's some evidence that it's lymph-related. I may have saved the info somewhere, and I think it's been discussed on here as well.

    I wish I could be as confident. I thought I could react quickly in emergencies but experience has suggested to me that it won't always be the case.

    I have very nearly fallen down the stairs a couple of times due to no longer knowing instinctively where my feet and legs are in relation to the ground. One occasion was pretty scary - I grabbed the handrail and involuntarily swung round about 90 degrees, holding on for dear life. That would have potentially been a bad fall, and it shook me up, with visions of breaking my neck as I might well have gone down headfirst and hit the wall at the bottom. It was a close thing. I have been very careful since then.
     
  14. Simon

    Simon

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    That would be great.

    Perhaps more likely is something like the Lights work on gene expression after moderate exercise, which also has the advantage, compared with maximal tests, that it represents real-life situations where patients actually experience PEM. They now have a substantial NIH grant to try to replicate the findings of very different results in ME/CFS patients so perhaps when that study reports there will be an altogether more moderate test with objective findings of abnormal response to exercise.
     
  15. Mij

    Mij Senior Member

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    It is very interesting how we are all different. From my experience having ME for 22yrs would make me a good candidate for this test. I always stay within my boundaries because PENE is something I try to avoid at all costs, it's just too distressing.
    I have gone through periods when I felt up to 80% improved fir a couple of years but if I do the SAME amount of exercise as when I'm feeling 40% the PENE is always the same. How I'm "feeling" makes no difference in exercise capacity, so the test result will show abnormalities no matter how well I am feeling at the time of exercise, there will be a unique physiological change upon doing just a small amount. If I'm going through a viral episode the PENE will come on within 2-3hrs, so like someone else wrote earlier is that we need immune testing added to the mix.
     
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  16. urbantravels

    urbantravels disjecta membra

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    I think there's a distinction between the ability to produce a short burst of *energy* versus coordination and reflexes. I'm definitely klutzy since I've been sick - I've broken a lot of dishes and water glasses, walked into tables and chairs, etc. etc. But on a bike for the exercise test I managed to put in maximal effort without falling off or anything. No need for coordination or reflexes there - just hang onto the bike handles for dear life and pedal straight ahead.

    Of course any given emergency or survival situation is probably going to require a combination of energy, strength, and coordination, so I'm not sure I could make good on my bear-eluding promises, unless it was on a straight even track. And it was a really short sprint. Hmm, this analogy may not be so good after all. Maybe I should go with "escaping from a burning building." Or "getting out in case of an earthquake." Not like those would require balance and coordination or anything..well, I now have no analogies, except "I could do an exercise test on a stationary bike if I had to."

    Mind you nobody *requires* you to take the two-day exercise test to prove disability. It's just pretty much the only tool you can use that gives an objective measurement of functional capacity, impossible to fake or exaggerate. And I'd also add that no disability insurer is *required* to take any note of this test or consider it proof of anything, since it is not an "officially" accepted test of disability from CFS. The Social Security Administration, in its guidance on CFS claims, says an "exercise test" may be submitted as supporting evidence but is careful to point out that no test is considered *proof* of CFS or its severity. They could, at their complete discretion, ignore a Stevens test completely, or decide it is invalid or irrelevant. Hypothetically.

    Without going any further into matters of which I should not speak...although I have seen a number of reports from people who prevailed in disability claims by taking the test, I feel obliged to point out that it is not a dead lock or a guarantee.
     
    SOC likes this.
  17. rosie26

    rosie26 Senior Member

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    I think in ME we are in PEM all the time aren't we. (sorry I am struggling cognitively today). As our threshold for exercise is so low. We are feeling unwell everyday, always something wrong.

    As for what day extra PEM sets in after exercise, for me it can happen anytime. There is no predictability. I can head out to an appointment and find myself doing a quick run to catch a bus and that short burst of a run can set me back in an hours time, my inflammation starts intensifying, I feel extremely sick. And there is also the accumulation upon accumulation PEM as well. That can result in a major relapse.

    Cheers to the ME sufferers who put themselves up for the exercise testing. x
     
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  18. Firestormm

    Firestormm Guest

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    rosie26 I think I tend to equate 'exercise' with physical exercise. And therefore it's more likely to be worrisome and in need of more careful consideration. I'd probably plan some time out to better account for any PEM even if my exercise now equates to a brisk walk.

    But a period of 'mental exercise' also can lead to consequences. So unless I have to - see below - I try and break it all up with distractions. Takes me longer but I am the tortoise now to the hare and usually get there in the end.

    It is hard to judge what activity or intensity is going to be more likely to lead to a 'flare' and subsequent need for rest. I think through experience we tend to learn our own limitations at any given time and can make judgements accordingly.

    Establishing routines if we can that fit to our own abilities is key but retaining some flexibility is also necessary. And that kind of makes it harder to commit to regular things - though I am ever full of praise for those who can.

    I was just saying to Simon that I anticipated after my night's stay in hospital, the travel and disruption; and then a 3 hour intense meeting on Wednesday; that I would be in need of at least a few days of cleared decks. It still though comes as a surprise and I find it very annoying when the 'flare' hits.

    Not always predictable the degree to which it can affect us - is it? And it's never just about the physical exertion; it's also the mental and emotional that we need to consider.
     
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I think that people who are relatively badly-affected may always feel unwell, but I don't, and suspect that many others don't, as long as we adopt measures to prevent it, e.g. suitable diet and supplements and careful pacing. When I feel 'well' I have negligible bodily discomfort and my brain and body are able to do what I ask of them, which has to be not too much so as to avoid PEM later. So I am not recovered, but feel what I regard as 'fine', a lot of the time. I wonder how often sufferers and health workers mix up the two conditions - well and recovered. Is 'well' the right word for feeling OK?
     
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  20. SOC

    SOC Senior Member

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    I'm in the same place since I cleared my known chronic infections and, equally importantly, learned to use my HR to pace my activities. Without HR-based pacing, I was always overdoing (while doing very, very little) and constantly had symptoms.
     
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