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I don't have chronic fatigue, I have "persistent periodic idiopathic exhaustion"

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by dean, Jun 8, 2010.

  1. dean

    dean

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    What's in a word,

    Fatigue doesn't begin to describe what I have experienced over the past 20 years, when I am suffering from an attack of our thing. I feel much worse than being tired or fatigued. People seem to better understand what I am going through when I tell them I am suffering from exhaustion then when I say fatigue.....

    Check out most dictionary definitions.
    "Exhaustion" is defined as "extreme fatigue"

    In addition, the time this state of exhaution lasts is variable, it comes and goes... from months to weeks to days to even hours. But when it strikes....I am not simply tired and fatigued..... I am exhausted.....totally....not a little or a lot, but totally.....It seems to be simply on or off.....in fact it is it is periodic....not simply chronic.....

    Periodic "Having or marked by repeated cycles"


    So, in fact, my syndrome is better termed periodic exhaustion ......

    However it really doesn't ever go away. Even though, over the past 20 years, when it seemed to have dissapeared at times, I had hoped I was better. But it always comes back.
    It is persistent......ie "Obstinately refusing to give up or let go"

    And I don't know why I have it. Although there are a number of persuasive theories as to its origin, at this stage there is no certainty. So it is also Ideopathic....ie...cause unknown....

    So, in conclusion, perhaps I am part of a subset because I don't really have chronic fatigue. What I really have is "idiopathic persistent periodic exhaustion" or "persistent periodic idiopathic exhaustion" In any case I think you get my drift.

    hopefully food for thought..... exhaustion versus fatigue etc ....
  2. BEG

    BEG Senior Member

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    LOL:D;):tear::D

    That is too funny, Dean. I do believe you have successfully renamed this disease.:D And the supporting evidence is certainly conclusive. Congratulations.:victory:

    Thanks for the smiles.

    BEG
  3. free at last

    free at last Senior Member

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    I agree Dean for me also there was so much more to it than just faitigue, i know where your coming from, As the illness progressed over years it tended to become more fatigue than the other symptoms, but still they are there ( just milder in severity ) the first year of onset was the worst in terms of power.

    Basically as bad as full blown flu, white as a ghost, very weak, chest infections, very high temperatures burning hot, then shivering cold, classic fevers nausea headach, light sensetive noise sensetive, just had to lay down, after the first year off onset, with long gaps ( healthy gaps ) the temperatures stopped, but the other symptoms did not, like i was being routinely poisened, then it was happening if i remember ( hard because i blocked so much out to survive ) about every week 3 days very ill a 4th recovering with side effect of nausea, 3 days fairly ok, then bang really ill again, this went on bad for years, i cant even rember how many it just turned into a life. At some point though slow recovery did start to happen where the symptoms got weaker and duration shorter. but it was so slow at first i didnt realize i was getting better. Like you say it was a like a on off switch, especially the first year of onset with the fevers, and then for a few years there after, you know i cant belive sometimes its been 15 years, were the hell did all that time go/

    i must have spent 5 years on my bloody back and 10 either feeling better or in between you know. My brain is frazzeld its like a blur, i can only remember certain key times that were the worst. the milder attacks i just blocked out, and chose to forget, if i had to give a proper time scale of severity and symptoms in 15 years ( to save my life ) i would be in trouble, its a damm blur, what i do remember, is periods laying down often sweating, Not doing a lot of excercise as i was getting ill doing nothing, let alone excersise, excersise just made me worse. But my excersise tolerance now is much better, only extreme bursts of energy ( like bike riding) make me ill. Though i do still get ill with out excersise too, But no where near as often, and no where near as ill as the old days. I really thought i was going to die dean, really pretty ill, so much so i think as ive recoverd. i may well have PTSD and certainly have bad phobias and fears about being ill, or catching things like influenza, im scared to death of catching fever producing illness.

    I lock myself away in the winter for 7 months, wont even go into a supermarket, real bad phobia. Dont know if this rings bells with you, But the mental effect has been devasting, with a sadness thats just a part of me now ( not depression ) i can be really happy, think of the past bad times and wham, sadness hits me like ive lost a relative or something. memorys of suffering just too much over the years i think. But im doing pretty good the last 5 years especially, with intermittent attacks, not colds or anything like that, but the ME symptoms reduced in severity, how or why im unsure, But restoring sleep patterns for me was a big walk up the health ladder. never know when i might crash though, could be today could be in 6 weeks, its very unpredictable to me. But even mild symptoms come and go daily, and ive felt poisened after long sleep everytime i wake up, that takes a good hour before i feel human, had that all of 15 years since getting the damm illnes sorry about the spelling my memory is getting worse i think, cant be bothered to correct them all
  4. ixchelkali

    ixchelkali Senior Member

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    I like it!
  5. dean

    dean

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    Last week when I first wrote the post, it was partially a joke. The switch was off. I was feeling great. Then yesterday, I noticed that pain in my hands, a vague but very specific pain. (confusing like this disease) My harbinger.... I have one joint, the first MP joint in my left hand, that seems to be like a canary in the mine.....By last night I was lying on my couch, exhausted.,,,, full blown attack. That is the way I woke up this morning......Shit.....
  6. BEG

    BEG Senior Member

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    Dean, I thought it was very clever. Upon reading free at lasts post, I am right back in a sad place reminding me there is nothing funny about this horrid disease. Free at last, I hope you feel better soon. Dean, hope you are not heading for a flare or crash. Best to the both of you. BEG
  7. free at last

    free at last Senior Member

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    Dont be Brown eyed girl, the picture i paint is the whole process going back 15 years, i have relatively recovered most of my health maybe as much as 80% i have been doing good for years now, for long periods verging on complete recovery ( this often is a illusion with long periods of relatively normal health ) though the worry of returning to former bad health is there i guess, and the mental effect is profound, i still think im one of the lucky ones, and presently not as sick ( no where near it ) as many on this forum and eleswhere. im doing good with hardly any profound crashes happening at all, just the occassional mild ones. Also humour is needed, its what keeps a lot of peoples spirits up, though its true the less sick have that luxary more than the profoundly ill. But thankfully that group is smaller i suspect ( hope ) than a lot of posters here My intention is not to bring people down but help discover patterns for myself and others that want that too. smile
  8. ixchelkali

    ixchelkali Senior Member

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    Oh, crap, Dean, I'm sorry you're crashing. I hate that feeling of knowing it's coming, and then it does. Hope it's a short crash.

    Brown-eyed Girl, of course there's nothing funny about this disease; that's why we have to laugh at it. Laughing at other people's tragedies is inappropriate and cruel, but for me at least, laughter is what gets me through my own tragedies. Laughter cuts it down to size. Laughter gives me the upper hand. Did you read the Harry Potter books? There's a creature called a boggart that takes on the shape of one's worst fear. The way to banish it is to envision it in a ridiculous form (for instance, picturing a spider on roller skates), and laugh at it. I believe that the more we can laugh at this, the less power it will have over us. It's my way of saying "Sure, bring on the pain, the nausea, the exhaustion, the brain for, the destruction of dreams. You can beat me down, but you can't destroy my humanity. I laugh at you! As long as I have my sense of humor, I'm still me, and you can't have me!" Pffffft!:tongue::D:D:tear:

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