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Does anyone feel like PEM = dying?

Discussion in 'General ME/CFS Discussion' started by Horizon, Jul 23, 2017.

  1. Horizon

    Horizon Senior Member

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    Ugh I'm in the i feel like I'm dying PEM mode. Nobody else seems to have this feeling. It scares me what if i have something progressive and just dont know what it is.

    Its like i feel like my body is gonna collapse, organs and can't breathe and just on the verge of dying feeling.

    Do others get this awful feeling during PEM?
     
  2. silky

    silky a gentle soul here to learn

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    I've had this once, and it was terrifying

    I wrote down all my passwords and gave them to my mom because I thought I was actually going to die
     
  3. Orla

    Orla Senior Member

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    Yes sometimes, but still alive 19 years later. I think there could be something going on which might reduce life-expectancy in the long-run, but I don't think there is a high short-term risk of it. I am not as severe as some though. I thought this feeling was quite common when in a flare-up?
     
  4. Alvin2

    Alvin2 Senior Member

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    Yeah i've had that feeling, though sometimes i think i could only be so lucky
     
    Horizon likes this.
  5. alex3619

    alex3619 Senior Member

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    Typically my answer would be no. On one occasion, just a few years ago, I would have answered yes. I could not even raise my feet off the ground. I finally found a taxi (I was out seeing a doc) and came straight home.

    It depends on what we mean by PEM, and I think there might be different kinds or variations. Indeed the main definitions seem to be around the theme of a worsening of your current symptoms, and that is itself variable.
     
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  6. bspg

    bspg Plant Queen

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    When I crash really hard I feel like I'm dying. It's horrible. I literally just lay there and try not to die. I don't think I've ever experienced something more miserable. :(

    The good news is I've always pulled through and I don't think I've had any lasting effects from it.

    I hope you pull through and get relief soon. :hug:
     
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  7. rosie26

    rosie26 Senior Member

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    Yes, my severe years were awful. I found it very scary and was quite traumatized by it not knowing what was happening. It would ease up but not for long. It is miserable and upsetting to go through. Resting was the only thing that helped ease things up some. I was too sick in those years to experiment with medication because I was so reactive to practically everything and I was too weak to handle the extra burden of side effects.

    I still go through severe bouts but it's not as endlessly full-on. The POTS symptoms still make me feel like I have heart and lung problems and might suddenly die. I often when out feel like it could happen and try to get home quickly.
    I kind of live now like that could happen because it is how it feels. People around me who know me don't have any idea of how sick I really am and the struggle it is to do things.
     
    Last edited: Jul 23, 2017
  8. Mij

    Mij Senior Member

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    @rosie26 . . . I don't have POTS, but the OI symptoms during a severe PEM episode is very scary. I once thought I might die too.
     
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  9. JaimeS

    JaimeS Senior Member

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    Early in the illness before I knew not to exercise. It felt like sepsis is described, or like going into shock. I remember thinking: my mother will find me dead on the floor -- she will come in for morning coffee tomorrow, and I'll be dead, on the floor. Followed of course with furious determination that such a horror would never occur, like I had a choice! :aghhh:

    It scared the beejesus out of me.

    Besides the fear, there was a core of disbelief that was hard to shake: that you can't experience that kind of suffering without some vital cog of your machinery cracking loose. You think, if what I just felt didn't kill me, it's certainly only a temporary reprieve.

    But it's not. It's the new normal until you figure out everything that triggers you that is at all avoidable.

    I encountered this kind of crash before I knew what would and wouldn't upset my newly fragile system. I haven't had this 'definitely dying' kind of crash in years, and if the other comments I've read are anything to go by, others also experienced this around onset but not necessarily later on. However, I'm not sure severe patients would say the same thing -- maybe *shudder* that's what it's like for them always.

    Finally, I'm glad you asked this question, @Horizon -- "a worsening of all symptoms on exertion" has always struck me as a woefully inadequate description of PEM. A bad bout of PEM feels like you're dying; I don't know how that got watered down to 'feeling a tad bit worse than usual', though that's what it's like in its most benign form.
     
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  10. NotThisGuy

    NotThisGuy Senior Member

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    Yes, for about 6-7 months I feel like dying. It's horrible....

    @rosie26 How did you get better?
    did you finally start again to experiment with medication or did it just go away on its own?
     
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  11. Revel

    Revel Senior Member

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    Absolutely, @Horizon, you are not alone!

    The onset of my ME/CFS was very gradual. I was only 9 and, since nobody realised that I was sick, it was still expected of me to walk to school and take part in all activities. One day, I couldn't get out of bed, there was simply "nothing left in the tank" and I experienced my first deathly PEM.

    I ended up being sent to hospital by my GP as an emergency admission. Since the doctors were able to examine me without the bias of an ME diagnosis to cloud their judgement, they came to the conclusion that, although they had no clue as to what was ailing me, I was without a doubt, dying.

    They told my parents that I would not survive the week and had 5 days left at most. The weeks ticked by and I slowly "recovered". Since they could find nothing wrong with me in all this time and yet I managed to get better without any actual "treatment" other than bedrest, I was declared a mental health case and passed over to the psychiatry department.

    So, not only does it feel like I am dying when I have really bad PEM, but my condition has been known to even fool a team of doctors!

    Of course, since my diagnosis of ME/CFS, I haven't met a single doctor who has taken the occasional severity of my PEM symptoms even remotely seriously - probably because I keep managing to survive them :rolleyes:.
     
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  12. tudiemoore

    tudiemoore

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    I don't have many of the effects you all have but I feel so---can't describe--just so "bad"--everything has hit a dead end, a wall, that I feel that I can't continue living in this state. Who could? There's no way.
     
  13. bspg

    bspg Plant Queen

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    I always wonder if this is what life is like for Whitney :cry:

    @Revel everything you described sounds absolutely horrible and I'm so sorry you've had to suffer through since childhood. My illness onset has been gradual as well but it didn't affect me as a child.
     
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  14. Neunistiva

    Neunistiva Senior Member

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    My username in my language means "indestructible". It occurred to me once while I was crashed that it's simply amazing this disease doesn't kill us and the we truly must be "indestructible" :)
     
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  15. TreePerson

    TreePerson Senior Member

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    Yes. I don't have much to add much that's not been said but I do feel that. And sort of light and heavy at the same time. Body heavy but so little energy you feel insubstantial. Everything goes straight through you as though you are not there. Dreadful feeling.
     
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  16. JaimeS

    JaimeS Senior Member

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    Evocative, you've managed to describe what I would have called an indescribable sensation.
     
  17. rosie26

    rosie26 Senior Member

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    Hi @NotThisGuy It was pretty much time (years) and rest. It took about 3 years to get to severe/moderate and then I think it was about my 6th year from severe onset that my ME became moderate. But then at menopause (12th year after severe onset) I deteriorated again.

    I'm still pretty sensitive to medication. In the last few years, since menopause, I have been reacting badly to antibiotics. Sigh. Hoping this antibiotic reactivity is just a phase that will pass.
     
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  18. Horizon

    Horizon Senior Member

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    Thank you guys, its good to know I'm not alone in this feeling. You have used some great verbiage to describe how this feels.
     
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  19. Rossy191276

    Rossy191276

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    Yes... I think the word 'shutdown' best describes my acute crashes... I use the term crash to describe my general state of worsening but even this does not come close to describing my worst post- exertional experiences... I had one last night after opening my bowels (which has become a major trigger that I don't know how to prevent even using bedside commode or bedpan... shutdowns to me mean becoming so weak that you can't move for several hours, only able to take shallow breaths, unable to talk, body will not accept any food, a general intolerable exhaustion/body ache that I never would of thought possible for a human to experience (and only with the willingness to endure it because I know that it passes back into general crash state within a day), tremoring legs/core, and certainly each time this brings the question of how a body can feel so bad and continue to function.. it saddens me to think that while this disease has been largely ignored that attention that is payed focuses largely on the mild/moderate... as I have reached a very severe cycle during the last few months I find so much of the terminology woefullly underestimates the severe experience.... I realise there is a range-- so maybe post exertional malaise/death like shutdown would be a better description of our cardinal feature....
     
  20. Mel9

    Mel9 Senior Member

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    Yes, for the first year, when I hadn't yet worked out the connection between trying to exercise and PEM I thought I would die during my PEM episodes. I felt 'poisoned ' and told my husband I didn't think I was going to survive.

    Now, because of my careful 'pacing' the PEM is milder (but I still cannot get out of bed when it happens)
     
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