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Is PEM only found in cfs?

Discussion in 'General ME/CFS Discussion' started by knackers323, Dec 6, 2013.

  1. Tristen

    Tristen Senior Member

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    I suspect the aspect of PEM that's unique to me/cfs is the delayed crash. There are several other conditions that have activity intolerance and PEM, such as Cardiac problems , but they lay the person out immediately following the exertion.....not 2 days later.

    When my me/cfs was severe, I wouldn't feel any changes for 24-48 following stress/exertion, then I would crash off into the abyss and remain there for weeks. Anyone think of another disease that does this?
     
    vli and Hip like this.
  2. anniekim

    anniekim Senior Member

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    Sorry if this is a stupid question but what is the difference between exercise intolerance and the measurable crash in energy production on day two after exercise that we have? How does excise intolerance manifest? Thanks
     
  3. svetoslav80

    svetoslav80 Senior Member

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    I asked the same question here long time ago http://forums.phoenixrising.me/index.php?threads/any-other-conditions-causing-pem.14502/ , however I have to say my condition worsened a lot during this time and now I often have some experiences similar to CFS and PEM. For example, even if I sneeze a little harder, I'd be sick the next week. Or if I don't sleep enough I'd also be sick the next few days. This is not exactly the same as post exertional malaise but I think these experiences may have the same neurological base.
     
  4. alex3619

    alex3619 Senior Member

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    Exercise intolerance is feeling unwell during or immediately after exercise. Its typically because there is insufficient oxygen or fuel during exercise. So if something blocks energy production during exercise, whether it be lack of oxygen or lack of fuel such as glycogen, then you get symptoms. Those symptoms can persist for some time, and may impact other symptoms.

    The key point is though that the underlying energy deficit restores within a few hours after exercise, and especially with a night of rest.

    With ME we can have this too. However our energy production is worse after that rest, not better. They are still trying to figure out why this is. Something changes during exercise, something that alters either the capacity to get enough oxygen or to convert fuel to energy. This is often a 30% decline. If I recall correctly there have been cases of a 50% decline, though I could be wrong about that.

    Contrast this with almost any other disease. The typical response is a 7% increase in energy the day after exercise. This is the opposite of what we see in ME.

    There has been focus on mitochondrial dysfunction and vascular dysfunction, both of which might impact this.
     
    Last edited: Dec 7, 2013
    bertiedog, Purple, SOC and 4 others like this.
  5. SickOfSickness

    SickOfSickness Senior Member

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    Delayed PEM is common but not a definite thing. My onset of PEM depends on how much I exerted and what kinds of exertion. If I did much, my onset is 1 to 3 hours! Perhaps less. Edit: I should add I have Fibro too, that may account for differences.

    It is more about the duration of PEM. In the primer for practitioners, the M.E. experts write "Recovery is delayed, taking more than 24 hours".

    Also our type of PEM is not only physical pains, but we have intensified cognitive symptoms and other symptoms. I believe many people assume PEM is feeling sore or tired, when it is many more symptoms (at least for those meeting the ICC definition of M.E.)
     
    Last edited: Dec 7, 2013
    Allyson, PennyIA and Ruthie24 like this.
  6. knackers323

    knackers323 Senior Member

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    If this finding is true then there should be no more dispute as to if this is a real and unique illness or not.

    Also you would think a better understanding of the nature of the illness should not be far off.
     
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  7. SickOfSickness

    SickOfSickness Senior Member

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    You would think so but relatively little is happening :(

    Supposedly 80% of us have low blood volume (the other 20% might not have M.E. but have something curable because the doctor who reported this was studying all "chronic fatigue" patients). And low NK cells is another indicator, I do not have stats on that. And a good deal of us have POTS or another form of OI. And most of us can't get expensive SPECT scans but we have hypoperfusion in similar areas.
     
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  8. alex3619

    alex3619 Senior Member

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    This requires a formal study including comparison to other likely disease groups, and replication. It could be done in a year if funding were available. Informally it has already been done, largely by doctors and exercise physiologists. I am not expecting any surprises, but you never know with science. The second day energy crash may yet turn out to be indicative of a family of disorders. However, regardless of which disease, it is solid evidence of disability.
     
    Ruthie24 likes this.
  9. Ruthie24

    Ruthie24 Senior Member

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    The problem being, as always, that funding for studies to validate the preliminary studies is elusive at best..... Hence the never-ending nightmare of this disease.
     
  10. knackers323

    knackers323 Senior Member

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    Has anyone ever tried to contact bill gates, Richard Branson, trump, dick smith directly? Or some other philanthropic organisation?

    It's probably a long shot but, you never know if you don't try. Maybe we could get a petition going to include in the letter?

    I will put my hand up and contact dick smith today
     
  11. Tristen

    Tristen Senior Member

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    I agree. My PEM has always been an exacerbation of all my me/cfs symptoms. For me PEM is not a different symptom, it's a flare of all of them. It's like I have an IV of poison running slowly, then with over-exertion/stress, it's opened up to a faster rate. How long of a delay before I react to that increase, has changed over time.

    True, that not everyone has a lengthy delay in the PEM response. But it seems the majority at some point do experience this, whatever that length of delay may be. I've gone from 24-48 hour delays for years at a time, to currently being 0-8 hours (last 3 years). But the length of my recovery to that PEM has also changed. It did take weeks to months, it now takes 1-8 hours. I have less of a delay, but I also have a much shorter recovery time.

    Our diagnostic tools do list prolonged recovery from PEM as a likely symptom of me/cfs, and rightfully so, but they also mention delayed responses as significant for these purposes. It's just my opinion, but I think the length of recovery following PEM would be common to more conditions that would a delayed reaction to the overexertion.

    Anyhow, I have great respect and appreciation for the our diagnostic tools. I still favor the CCD and all it's listed diagnostic criteria, since it did end a painful decade long search for a diagnosis (it fits me to a t), and it led me to a great me/cfs doc (also a co-author of the CCD). For me, whatever he says goes.....no argument, regardless of my opinion on these issues.
     
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  12. anniekim

    anniekim Senior Member

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    Thanks Alex for that very clear and helpful explanation between the differences, clearer now. So perhaps this explains the difference in PEM say that can happen in MS and our lowered energy production after rest. I never understood when people wrote there could be pem in other conditions as I always felt it was unique in ME. Now your explanation has helped me see other conditions may have exercise intolerance as we do too but they don't have a worsening of energy production after rest.
     
    rosie26 likes this.
  13. anniekim

    anniekim Senior Member

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    Also my abnormal response to exertion, as I am sure like others, can not only cause an exacerbation in symptoms for a few days or weeks but a long term reduction in functioning. I was mainly housebound until 3 years ago when I stupidly did a 200 metre walk. From the next day I went from being able to mobilise around my flat, sit upright in a chair to being only able to walk a couple of steps and always having to be in a reclining position. 3 years on I have never got back to the level I was pre that short walk, it had a devastating impact on me. I would love to know what was the pathology behind it all...
     
  14. rosie26

    rosie26 Senior Member

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    I liked your explanation too distinguishing the differences of exercise intolerance and PEM @alex3619. I have always had difficulty expressing those two as in the severe years the exercise intolerance was always always there and the PEM complicating and worsening the illness overall.

    I found in the severe years it was hard to distinguish between the two, they overlapped each other more closely/intensely. Takes a long time to get to grips and trying to understand all the symptoms that are bombarding
     
    Last edited: Dec 7, 2013
  15. twilightsun

    twilightsun

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    I'm curious how frequently others experience PEM after strong mental or emotional exertion, as well. Physical exertion definitely triggers it (and yet I still go shopping every Black Friday...) but I am currently experiencing a rather nasty crash related to mental exertion from yesterday. It didn't even hit first thing in the morning, but after I'd been up for a few hours today. Although that's not really atypical, I suppose.

    At least for me, mental stress tends to cause me physical stress. It seems to make sense - heart rate goes up, breathing gets rapid, muscles get tense.
     
  16. mellster

    mellster Marco

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    It's definitely fairly unique although there may be few other disorders/illnesses that can express this. I remember a couple of years ago going directly to a cardiologist after a kickboxing class with chest pain/inflammation (during the exam) amongst other symptoms (but never SOB) and the EKG and ECG came back completely normal. Looking back I think it must have been connective tissue and lymphatics plus cytokine overexpression. Although it happened consistently for a duration of 6+ months (with gradually lessening severity), I cannot even recall the exact feeling anymore, it was so confounding. I visited one other cardiologist back then for a stress test which came back mostly normal except for a couple of scattered skipped beats during and some resting tachycardia after exercise and he suggested I was "nervous" which made me want to punch him ;) The report also said that I had above average Vo2max which I found hard to believe given my state at that time but I think the national average is fairly low. I can't speak for others, but at some point I laid the possibility of structural heart issues to rest. I also had chostochondritis and FM dxed at some point but IMO those basket-definitions are pretty much worthless.
     
  17. twilightsun

    twilightsun

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    I remember the first time I went to the doctor (my primary) for chest pain a few years ago, and after making sure there wasn't anything wrong with my heart, she diagnosed it as costochondritis and prescribed my some high dose ibuprofen. (That did clear it right up.)

    The next time I saw my psychiatrist, I told him about it, and I'd thought that costochondritis was a thing. That's when he informed me that it's a junk diagnosis that only describes the symptoms - inflammation of the rib cage - and doesn't really mean anything useful. Story of our lives, right?
     
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  18. Valentijn

    Valentijn Activity Level: 3

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    Focusing on speaking and listening to a foreign language that I'm not really fluent in yet can trigger a crash with me. It's the most cognitively demanding activity for me, and even a relatively small amount can trigger a crash or assist in causing one. Reading a novel for a few days also might do it to me.
     
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Costochondritis Is more of a thing then alot of psychological diagnosis. Its quite common and its real. Maybe the psych doesnt want u to believe u have a real physiological issue, it takes away from his psych diagnosis??
     
  20. SickOfSickness

    SickOfSickness Senior Member

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    Psychological stress does that to me and causes PEM.

    I think valentijn's examples are mostly mental stress, rather than psychological. Mental stress seems different, but overlapping.

    In fact, if you take the example of reading, it overlaps with physical too. As we would be straining our eye muscles, and mentally having to process all those words, and psychologically it could be stressful reading about the character's hard times.

    Yes! :ill:

    Well hooray for ibuprofen clearing it up. I am surprised the doctor actually helped you.

    It's sort of a junk diagnosis. Like someone complains of stomach pain and they can't find anything, so he has "gastritis" or inflamed lining of stomach. At least doctors may believe he has stomach pain, but it's junk because it's the label after they were stumped.
     

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