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The only disease with PEM?

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Samuel, Dec 3, 2009.

  1. Samuel

    Samuel Bedbound with NO DOCTOR

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    Forgive me for asking what should be a really obvious question, but I'm not sure I completely understand this, and I want to.

    Some people say that ME/CFS is the only disease with post-exertional malaise. Shall I interpret this to mean that people with bad flu don't experience malaise, profound exhaustion, and worsening of symptoms upon physical or mental exertion?

    And people with chronic untreated Lyme (I don't know what the correct term is) don't? People with FM, atypical MS, or non-HIV AIDS (I don't actually know what this is -- is it ME/CFS?) don't? People with Lupus and Behcet's and CHF can exert themselves without payback?

    What is it like for those, then? Just kind of hard to do stuff but it doesn't affect other symptoms and you don't need to recover afterward? But surely exertion requires rest afterward?

    When people tell people with the flu to get some rest, what are they saying? That you're OK if you don't rest, but it's better for the immune system to rest?

    Maybe I have been sick for far too many decades to remember any other disease experience.

    Maybe somebody can clarify this.

    Thanks.
     
  2. Victoria

    Victoria Senior Member

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    Samuel,
    may I suggest that "Some people" are wrong?
    (I think there are many health problems that have post-exertional malaise).
     
  3. Michael Dessin

    Michael Dessin Senior Member

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    For years and years I read this too be true of PEM being exclusive to ME/CFS, however my doctor tells me differently now, so I have to agree with you.

    Mike
     
  4. Lily

    Lily *Believe*

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    Samuel

    From what I have read and experienced by talking with friends who have MS, lupus and rheumatoid arthritis - they do experience what they call post-exertional fatigue/malaise, however it does not include the myriad of symptoms like CFS. Not at all.
     
  5. Michael Dessin

    Michael Dessin Senior Member

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    lodershaw

    What you said is how my doc explained it too me.

    I think what ME folks experience with the entire package of symptoms along with PEM, the kind that feels like we get no oxygen to our brain....is different than any other condition

    Mike
     
  6. dannybex

    dannybex Senior Member

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    Heart disease...

    I would think that anyone with severe heart disease would experience PEM...?
     
  7. Michael Dessin

    Michael Dessin Senior Member

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    Dannybex

    Don't know?

    I think our PEM is a result of respiratory system issues, stemming from ANS dysfunction, don't know what a heart condition alone may cause.
     
  8. caledonia

    caledonia

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    I have a friend with post-polio who seems to get PEM. Increased fatigue, increased pain, and the last time he did a trip he ended up the hospital with breathing difficulties.
     
  9. anne

    anne Guest

    Might I divert your attention to a nice write-up on the Phoenix Rising site?
     
  10. Michael Dessin

    Michael Dessin Senior Member

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    Thanks

    Thanks Anne for posting that link.

    I actually just met Staci Stevens, super nice lady.

    Mike
     
  11. shrewsbury

    shrewsbury member

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    I heard a video of Staci Stevens and team (Pacific Fatigue Lab) leading a session at the University of Calgary conference fall 2008. It was a video but I could only get the sound. Hopefully you'll have better luck. She starts with exercise intolerance and post-exertional malaise. She had some graphs that sounded fascinating - one showed post-exertional fatigue if I remember correctly.

    LOVE that they say that "appropriate exercise is exercise from which patients recover".

    The video doesn't address whether other diseases have PEM, but does go into great detail about what PEM in ME/CFS is.

    Here's the link - it's the 10th podcast. Had been hoping to do a full post on it as found it addresses "exercise" in the best way I've seen to date, although there are very occassional weaknesses with some of the team. Think the title should be "life, 5 minutes at a time" as she says that we have started using our aerobic system after any movement, even just sitting up, and that our aerobic systems don't work. She advocates training with 30 seconds of anaerobic exrecise followed by rest.

    Have searched for a transcript of it a few times, but not found one yet. If anyone knows where they are, would appreciate hearing.

    In looking for the podcast, discovered that Dr Klimas was also at the conference (she's the 9th podcast).



    islandfinn:)
     
  12. Michael Dessin

    Michael Dessin Senior Member

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    isalndfinn

    Thank You!!
     
  13. fds66

    fds66 Senior Member

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    Maybe they are talking about the delay we sometimes get between the exertion and the after effects or the fact that the after effects can last way longer. I'm sure lots of conditions can make you feel really tired and not too good if you overdo it but maybe they don't make you feel so awful a day or two after you do something extra or suffer for days after overdoing it for a day? Also I've had situations where I've slightly increased the amount I do and been fine for a little while only to crash spectacularly weeks later. This is just a guess that we may have different post exertional effects. Just an opinion.

    Island Finn, think you posted while I was trying to make this post make sense. Off to look at that now thanks.
     
  14. Alice Band

    Alice Band PWME - ME by Ramsay

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    I'm not sure how many other WHO classified diseases will have sore throats, glands up and viral symptoms after a small amount of exercise.

    It can depend on how PEM is described.

    Ramsay spoke about severe symptoms after small amounts of exercise.
     
  15. Michael Dessin

    Michael Dessin Senior Member

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    Alice Band

    Yes! there can be a miriad of symptoms after exercise, some lasting from during exercise, 1hr after to PERMANENT!!!

    Bottom line, with the ANS including respiratory function....NOT adjusting properly to exertion can lead to catastrophy if not very cautious during exercise.

    Our bodies just are not equipped for exercise or pressure changes, anything that has to do with CNS-VASCULAR System working together.

    It sucks but true!

    Mike
     
  16. Mithriel

    Mithriel Senior Member

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    I've felt for a long while that post exertional malaise doesn't describe what happens with ME.

    Any one who goes to a gym for the first time will experience post exertional malaise - it is the normal reaction to suddenly exercising or exercising beyond what your body is able to do.

    I think it is this sort of problem you get in heart disease, flu, even Lyme disease. A normal reaction to exercise if you are weak or your body is not right.

    Dr Ramsay said that with ME there is an abnormal response to minimal effort.

    I used to know I had walked too far when I got double vision (which could lead to blindness). The next thing would be vertigo, then a confusion where I would not be able to remember where I was or where I was going.

    This could happen after a long walk round the shops or before I reached the bus stop, depending on how my illness was doing.

    I think it is this that is unique to ME.

    Exercise causes a global exacerbation of symptoms. In fact, exercise, or rather effort, is to ME what pollen is to hay fever.

    There is also the lack of energy which is common to other illnesses even if we experience it extremely. I have to rest after getting into bed before I have the energy to pull up the bedcovers.

    Then we also have the delay. I get my payback after three days. It doesn't mean I don't get some problems at the time, but three days later I will know just how badly I did, whether it will be confined to bed unable to eat or sitting in a recliner all day.

    Mithriel
     
  17. Michael Dessin

    Michael Dessin Senior Member

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    Mithriel

    Thank you for sharing that! :D
     
  18. MargeM

    MargeM MargeM

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    I don't think post exertional malaise or the global exacerbation of symptoms is unique to CFS. People diagnosed with genetic mitochondrial disease experience this also. Actually, the reaction to exercise appears to be quite the same for both conditions.
     
  19. Kati

    Kati Patient in training

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    I am not 100% sure but I believe that Chronic Lyme disease has that symptom overlap with CFS. The other thing that overlap is the lack of caring from most physician that think that both diseases do not exist...
     
  20. Robin

    Robin Guest

    heart failure?

    Last year I took care of my grandmother until she passed away this Spring. She was in moderate congestive heart failure. (Incidentally, I had a cat in heart failure too at that time.)

    I was struck by the fact that she seemed to have post exertional malaise. She would have a "good" morning, overexert, and then spend the rest of the day and the next day complaining about how tired she was. Then she'd say, "but I didn't do anything today! Why am I so tired?" I coached her about pacing but she was 88 at the time and couldn't really grasp the concept.

    It happened over and over. At times I could tell how much she had gotten up and walked around in the morning (she used to get up at 5am) by how tired she was in the afternoon. She had mild dementia but on tired days she couldn't remember anything or understand a whole lot. It would improve on days when she felt stronger.

    The cat, in his own little way, showed something similar. He was an outdoor cat until he got sick. He hated being inside and would sneak out sometimes. Then he'd get in a fight with a neighborhood cat. He couldn't win the fights anymore and would come home and be like a limp ragdoll cat for at least two days.

    I saw a show about people climbing Mt. Everest and was struck how much altitude sickness is like CFS!

    Something weird is going on regarding cellular energy and/or oxygen with PEM.
     

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