***WAYS TO EXPLAIN FM & CFS***

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Sharon, Apr 17, 2008.

  1. Fibrofries

    Fibrofries New Member

    I hope you find more compassionate friends. Try to stay positive.
  2. GracieJ

    GracieJ Member

    Sharon, thank you, thank you, thank you! for all the cool postings. My rather large family STILL does not believe there is anything wrong with me past being lazy, and that is after 20 years of this. I finally do have two sisters who believe me; one had to go to work again at 56 because her husband has these two conditions, the other believes but thinks it is all mostly "mental illness" and she is humoring me or something.

    Don't remember the title of the book, but this comment in the introduction drove the reality home to my daughter. The writer said that living with chronic fatigue syndrome is comparable to the way an AIDS patient feels two months before death. I could have cheered!
  3. skycloud

    skycloud Member

    is it new chat room
    skycloud
    is sneet here too?
  4. jerry-eng

    jerry-eng New Member

    My name is cleveland (jerry) whiles . I used to be on a fibro chat line , and Sharon was a monitor. I was just wondering if you were that same Sharon . The reason I ask is because, I have forgotten how to get on the chat line .I was checking about fibro today and I saw yor name on the message board and was just wondering if it was the same Sharon that I chatted with about three or four years ago.
  5. jc16551

    jc16551 New Member

    Hi there,

    CFS is a auto-immune disorder caused by systemic underlying oxidative stress that prevents down-regulation of the immune system.

    ROS (free-radicals) eat away at enzymes in the mitochondrial electron transport chain and decrease ATP (free-energy) production accordingly, especially when it comes to aerobic (oxidative) metabolism.

    Cardiac output is decreased accordingly... as demonstrated by decreased LVEDP. It's the combination between decreased cardiac output/circulation and abnormal cytokine profiles due to said abnormal immunological parameters that is primarily responsible for the symptoms and clinical presentation of CFS.

    -Dr. Dan
  6. IanH

    IanH Active Member

    If Dr. Dan is correct then it should not be called CFS. ME is more correctly descriptive. Just stop calling it CFS.
  7. Marylib

    Marylib New Member

    I am not sure how long this link will work, but it is working now. It is a television interview in New Zealand with Dr Ros Vallings, an ME/CFS specialist. Appearing with her is a sports star and sports announcer who is slowly getting better, but makes it clear how devastating the illness is. Healthy people tend to believe sports stars!

    http://tvnz.co.nz/good-morning/extra-110912-barnett-video-5075701
  8. Jacci

    Jacci New Member

    Sharon,
    Thank you so much for your post. I needed to read that. I'm going through a horrible flare and just at the end of my rope. I feel like no one understands what I have to do to just get out of bed in the morning. I am so frustrated right now, I want to scream. Thank you again for posting - you understand!
  9. jg216

    jg216 New Member

    Jen,
    you can print that article, i did. Just right-click your mouseright at the beginning of the first word or title of the article, and hold it down while slowly bringing it down the length of the article(it will be in blue), then release. then right click again, click on the box that says copy. then bring up the start page at your lower left corner of your screen, find notepad, click on it, then right click your mouse, click on paste. then click print. Done and you can even save it if you want to send it later to someone through e-mail.
  10. luigi21

    luigi21 Member

    I get worn down by this burden,
    Its load to heavy to bare,
    I feel it will snap me in two,
    Its drained out my happiness
    And coloured me blue

    i feel a twisting wrench
    Deep down inside my gut
    I feel it will twist right out of me
    Every hint of strength ive got

    My chest it feels so heavy
    An invisible band squeezes it tight
    My heart thumps hard against my chest
    Broken in two?
    It just might


    Something is gnawing at my bones
    My muscles burn like fire
    My joints are stiff
    The pain relentless
    My body will easily tire

    I am wide awake in the dark
    I am all alone
    No amount of sheep
    Can close my eyes
    Im living in the twilight zone.

    This information overload
    Will often make my head explode
    Words of comfort are little consolation
    The life i once knew has left me at the station

    On my awakening
    I can feel the aching
    My energy has deserted me
    Like a friend turned into an enemy
    Chained down will i ever be free

    My reflection still looks like me
    But if you look into my eyes
    They will tell you what i know
    My soul is crying
    My dreams are dying
    Where did i go?
  11. Milo83

    Milo83 New Member


    I always sent them copies of the 'Spoon Theory' & some info on Fibro....I was very blunt with them when saying: if at the last minute, I can't attend a function of any kind, & you don't understand, then I'm truly sorry, and maybe you should go back and read everything for a second time ! I'm just the type of person after being officially diagnosed with Fibro in 1992 (plus the fact, I now have Scleroderma), if someone doesn't get it, that's their problem. I must say the majority of my family & friends have been very understanding ! :)

    Donna
  12. Soul*

    Soul* Active Member

    I saw some people asking about how to explain CFS/ME to kids. Though that doesn't cover all the symptoms to keep it simple I usually just compare it with a battery. Especially kids with cellphones know what a flat battery means and what happens if it is worn out and just won't recharge properly anymore but same goes for battery operated toys and using rechargable batteries. Sometimes it may seem all is well and you have a full battery but then all of a sudden it's empty after all and then nothing functions correctly and hard to make it function. Same goes for us, our 'battery' is worn out and won't recharge properly. It will fool us into believing it is charged just to wipe us out the next moment, just like rechargeable batteries sometimes do. They usually understand too when you explain to them that when you are very tired you find it harder to stay happy since they usually are able to recall when they where real tired and unhappy simply because of being tired. Our computer (brain) won't function properly when our battery is low. If I say my battery needs recharging they usually understand enough to be able to accept that I can't give in to their wishes of what they would like me to do that very moment.