Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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How do you ANECDOTALLY define PEM?

Discussion in 'General ME/CFS Discussion' started by Kenny Banya, Jul 16, 2017.

  1. Kenny Banya

    Kenny Banya Senior Member

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    So not by biological tests
    Your personal experiences
     
    lemonworld likes this.
  2. TiredSam

    TiredSam The wise nematode hibernates

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    Turning into a zombie. Effort of walking is too much, so I just shuffle along if I have to move at all. Memory, concentration and word-finding problems, unable to follow a conversation, headache, generally feeling unwell in stomach, kidneys and various other places. I just want to shuffle along to the churchyard with a dull, glazed expression on my face and lie down in a grave.

    Did I mention tired? "Tired" is a completely unnecessary word in my opinion, doesn't even begin to describe it and just leads to confusion.

    EDIT: forgot to mention, while this is going on, from the outside I look absolutely fine! Maybe "bodysnatched" would be better than "zombie".
     
  3. Jessie 107

    Jessie 107

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    Ha ha, your description is very good, really made me laugh, particularly the bit about shuffling along to the churchyard! I can so relate to that.
    I always get flu like symptoms, sore throat, glands and chest hurt, muscles aching, whole body hurts and just overall feel so ill. This usually lasts for a few days.
     
  4. Skippa

    Skippa Senior Member

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    "When someone expends energy, they get tired. Maybe deliberate exercise, or working or other tasks. They say 'ooh im tired' and go get a rest to recuperate. Resting restores them, a good nights sleep and their body fixes itself (sometimes there will be lingering aches and pains if it was particularly strenous, but these tend to wear off with time). Not so with PEM. A good rest invariably leaves one feeling worse, instead of recuperating the 'damaging' process seems to continue, even long after the activity. The aches, pains and fatigue grow*, always a day, sometimes two or three days. So the damage from tiredness for some reason far exceeds the effort spent. And then the recuperation begins, slowly, and accidentally 'overdoing it' can cause the negative process to start all over again. And only time cures it. No diet, meds or special techniques can exarcerbate the healing process, all one can do is try not to make it worse. Slowly you return to baseline, and are ready to go again, and suffer again, but ignoring this and 'fighting through' the fatigue and mental inhibition can leave one's basline noticably and permanently lower."

    *walking becomes a pain, muscles and joints aches, ones that weren't even involved in the initial task, dizziness occurs easily, mood sours, thinking becomes muddled and it is impossible to construct a mental working map to solve tasks, eyes droop and darken, light and sounds become aggressive and intolerable, the spine feels like it can't support the body, the entire body cries out to be in a supine position, lymph nodes itch and ache, temperature regulation goes weird (straining on the toilet can induce sweating!), stiffness grows all over, bones ache, jaws grind, headaches form, the body becomes a lead weight, simple tasks feel herculean in stature, and the gut hurts, grinds, goes into overdrive and then shuts down entirely, and heart flutters and palpitations become annoying at the least.
     
  5. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Pretty much as others have described.
    Sitting on a sofa or lying on a bed is pretty much all I can do when I get PEM
    All my usual symptoms that are in the background suddenly come to the fore:

    joint and muscle pain increase making it painful to move or indeed get comfortable sitting
    difficulty concentrating on the simplest things like a two way conversation or reading
    Short term memory disappears (can't remember what I did yesterday)
    Waves of nausea
    Headache and blurred vision
    Intense bouts of Diarrhoea and outbreaks of skin infections-spots (normally after the main event)
    Complete lack of energy to move if I try standing, legs are wobbly and have to sit down again
    Sound and light sensitivity increases need to put my ear plugs in.

    It's one of those "oh no" moments that lasts at least 24 hrs as an intense set of symptoms and typically followed by a hangover/recovery of 1-2 days.

    I should say I have all of these symptoms off and on all the time but PEM for me is like they all intensified all at once.
     
  6. Alvin2

    Alvin2 Senior Member

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    I'm fried like a chicken, i can't think straight or concentrate for days, i feel like crap, exhausted and burned out. I spend more days fried then i do functional.
    On recovery days i do very little except watch reruns because anything else is too mentally taxing and i alternate from computer/internet to laying down.
     
  7. NelliePledge

    NelliePledge plodder

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    like getting knocked back by flu aching all over, no energy, sore throat, swollen glands, nausea, a lot of lying down needed for a couple of days then gradually easing off,

    i have mild ME so dont get all of these all the time usually, I get a sore throat really easily when Ive used my energy up but swollen glands is only when Im at my at worst
     
  8. belize44

    belize44 Senior Member

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    I can usually tell it is about to hit when I wake up and contemplate is it alright to leave my bed, only to find that the entire room is gently spinning. Sounds minimal, I know, but that is usually my first cue. If I do get up, my body feels like I am wearing a suit of leaden armor, and I can barely lift my feet so I must shuffle. My armpits ache as if swollen, and my throat hurts, as well as every darned trigger point being triggered and painful. I get weepy and question the meaning of my life, and my digestive system seems to take a mini vacation. This is what PEM feels like to me!
     
  9. hellytheelephant

    hellytheelephant Senior Member

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    Agree with all of the above: I feel like I have run into a hard surface at great speed...it can last days or weeks...

    Aching all over- feels like I've been run over. Eyesight blurry. hard to talk. Very thirsty. Chronic pain flare up. Difficulty walking even a couple of steps.
     
  10. Mij

    Mij Senior Member

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    @hellytheelephant . . . yes, feeling very dehydrated and difficulty standing or sitting upright. Feeling distressed and hot. Poor coordination. Unable to concentrate and slurry speech. Lack of appetite.
     
  11. hellytheelephant

    hellytheelephant Senior Member

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    @Mij I have OI/POTS I am wondering how many of those symptoms are related to having that.
     
  12. Mij

    Mij Senior Member

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    @hellytheelephant . . . I don't have POTS, but I do have autonomic dysfunction issues. I'm comparing my PEM symptoms from 17 years ago and it seems my OI issues have become worse each time I get PEM. It's the most distressing part.
     
  13. A.B.

    A.B. Senior Member

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    In addition to what others have said: low body temperature (not noticable during warm season). Body temperature can also drop 30 minutes or so after exertion (the body seems to shift into resting mode and that's when increased symptoms occur in my experience, as well as on the following day after waking up)

    In general I feel the dynamics of the illness are unpredictable and I suspect it has something to do with disturbance of some of the mechanisms that come into play when the body adjusts itself to environental conditions and stressors.
     
    Last edited: Jul 16, 2017
  14. dangermouse

    dangermouse Senior Member

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    It's like someone pulled my plug out. Even after sleep there's zero energy. Walking is like wading through treacle. Thinking/sentence formation/word finding/memory goes AWOL.

    Orthostatic intolerance increases. Nausea and vertigo increase. Horrible ache in back of neck (always exact same place). Aching like I have flu. Swollen glands. Sacroiliac pain increases. Fatigue floors me.

    Dexterity worsens.

    Light, noise, smell, touch are unbearable.

    Blurred vision. Migraine.

    Generally, I feel like a rag doll that my daughters pup just finished playing with.
     
  15. Sushi

    Sushi Senior Member Albuquerque

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    Same as others have described so well above. I'll just add the "tendency to collapse"--meaning very sudden, imperative need to sit or lie on the floor--no time to even seek a chair or couch before I hit the floor without choice.
     
  16. Advocate

    Advocate Senior Member

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    The above anecdotes are very similar, but they don't sound like "malaise" to me. To me, “malaise” indicates unhappiness, melancholy, depression, etc. Isn’t there a better word than “malaise” to describe what is happening here? A word that describes loss of function, not change in mood?

    - if I try standing, legs are wobbly and have to sit down again
    - my body feels like I am wearing a suit of leaden armor, and I can barely lift my feet
    - Difficulty walking even a couple of steps.
    - difficulty standing or sitting upright
    - Walking is like wading through treacle.
    - “tendency to collapse"--meaning very sudden, imperative need to sit or lie on the floor--no time to even seek a chair or couch before I hit the floor without choice.
     
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  17. A.B.

    A.B. Senior Member

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    Malaise pretty much means feeling sick and unwell as far as I understand.

    Loss of function is called impairment, or functional impairment.
     
  18. Murph

    Murph :)

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    You know you have PEM when exercise makes you tired - but not in the way exercise should.

    Tired like you're coming down with something. You get all the symptoms of the start of a flu: confusion, bad mood, feverishness, pains, sleepiness but bad sleep, and lack of energy to do things.
     
    Jessie 107 likes this.

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