Illness that Eludes Doctors is very Real to Bowie Woman

Discussion in 'Fibromyalgia Main Forum' started by UnicornK, May 22, 2006.

  1. UnicornK

    UnicornK New Member

    By David Emanuel
    Staff Writer
    Bowie Blade News
    Thursday, May 18, 2006

    Imagine living with a disease that leaves you wondering from one day to the next if you can even walk again.

    Imagine being in pain, be it mild or sharp, pretty much 24 hours a day, seven days a week.

    Imagine being tired all the time and thinking just few hours of sleep is a blessing.

    That's what 47 year old Kathy Winger lives with daily, and there are millions of others like her.

    She suffers from a combination of fibromyalgia and chronic fatigue syndrome, diseased recently deemed "real", as Winger said.

    Chronic fatigue Syndrome is a debilitation conditioncharacterized by severe fatigue and profound exhaustion that cannot be explainedby and underlying medical condition. The fatigue in CFS is extreme and bears no relation to the fatigue a healthy person feesl as the result of a busy life.

    People with CFS also have poor stamina and find that normal daily activities, such as showering or making the bed,can cause exhaustion and breathlessness.

    Fibromyalgia is chaacterized by severe musculoskeletal pain, and often this disease and CFS go hand-in-hand.

    Fibromyalgia is also an illness that involves every part of the body, and has many other symptoms as well, that may include impaired memory or conecntration, sore throat, muscle pain, nausea, insomnia and neurological symptoms.

    Recovery from CFS and fibromyalgia are not guaranteed. Some people will have the condition for the rest of their lives, some become completely disabled, housebound or bedridden.

    "I've gone from doctor to doctor and many of them still don't acknowledge these (diseases), she said.

    Winger said she's not sure when in her life the diseases actualy started (it is often difficult to determine), but it's certanly been in Winger's life for quite a lomg time, since she was in her 20's.

    Sometimes called the "Yuppie Flu" (and those suffering from this hate the term, said Winger), CFS is far from being a disease that leaves you tired and overworked.

    "Not everything hurts every day, but something does," she said. "The pain moves. One day it's in your foot, the next it might be in your arms. When I get up every morning, I ask. 'Well, what's gonna hurt today?'"

    Friday [May 12] was Chronic Fatige Syndrome and Fibromyalgia Awareness Day, and Winger hopes mpre people become educated that this is a real and dibilitaing disease.

    "There are still a lot of doctors out there who don't understand it, and just chalk it up to depression," she said. "Many stillsay it's all in our head. But there is testimony out there form millions of people suffering from from this who will tell you otherwise. They'll tell you its not a matter of having to exercise ot lose weight. And as for depression, that is a secondary symptom. It is a result of having CFS that a person gets depressed, not the other way around."

    Winger takes 32 pills to get her through the day.

    They help, she said, and on some days she doesn't have to take some of the pills, others, she may take them all.

    "A good day for me is what it feels like for you when might have the flu," she said. Just kind of tired and drained. Some day I suffer from a migrain. Other days my lims just hurt."

    So how does she cope every day?

    "You kind of mentally find a way to block it all out, and you have to surround yourself with people who support you. I don't know what I'd do without my husband, who's been so helpful and supportive through all of this," she said. And you have to have a sense of humor about it. You have somehow keep a bright outlook."

    Winger said she knows people who have committed suicide over this.

    "You just have to be secure enough in the knowledge that there are some treatments, and maybe someday, a cure." she said. it hasn't been determined whether this is a genetic disease or not.

    "I don't want this disease to take my life away from me," she said. "Istay involved in things. I have my limits, and I accept them. I do what I can dol I realize, for example, I'll never play volleyball. I can ('t sic) be a judge."

    Winger said the most important thing people need to understand about CFS snd fibromyalgia is that the people suffering from them aren't lazy.

    "We aren't lazy. We aren't slackers," she said. "We are sick!
  2. mme_curie68

    mme_curie68 New Member

    Great article!

    Good on you!

    Hugs,
    Madame Curie
  3. UnicornK

    UnicornK New Member

    Yes, this is the article I was interviewed for. I thought it came out pretty good.

    Because I have some kind of firewall on my computer, I had to type this in word for word. I sure hope there are no typos! LOL

    It is online at the Bowie Blade website. Just googled "Bowie Blade". And look for the title (above).

    Let me know what you all think!

    God Bless.
  4. UnicornK

    UnicornK New Member

    Bumping this up so EVERYONE can read this!

    (Is pride still a deadly sin??? I sure hope not! We gotta get the word out there!!!)

    God Bless.
  5. hugs4evry1

    hugs4evry1 New Member

    I thought it was a wonderful article.....very well done!!

    Hugs,

    Nancy B.
  6. findmind

    findmind New Member

    Good job, woman! You rock!!

    The article was very clear and communicated the seriousness of these dds very well.

    You should be sure to write a thank you note to the writer, ok?

    Thank him from all of us too, LOL, maybe he'll come online and read some of our posts and do even more research and write even more, and....

    We can always hope!!!!
    Many hugs,
    findmind
  7. Marta608

    Marta608 Member

    One of the best and most accurate articles I've read about CFS/FM. I guess it pays to talk to someone who's dealing with it, right? lol

    I wonder if it would be helpful to write to the reporter and compliment him on the article. I'll google it.

    PS. I did google the article, copied and pasted it, and sent it to my local newspaper. Thanks for the inspiration!

    Marta
    [This Message was Edited on 05/23/2006]
  8. phoenixrising2

    phoenixrising2 New Member

    Thanks for helping get the message out there. If we all keep getting the truth out there, people will have to listen to us and BELIEVE. Good Job!

    Hugs,

    Phoenix


    [This Message was Edited on 05/23/2006]
  9. UnicornK

    UnicornK New Member

    I have every intention of emailing the paper to say thanks and to put my email address out there.

    Even with no info except my name I already have had two calls. Amazing!

    Please feel free to send the Bowie Blade site to others if you think it will help. I was so amazed at how well he did. Got right to the core of the problems.

    I'm his fan for life! LOL (Of course that could have something to do with the fact that he thought I was in my early thirties, not 47. LOL)

    God Bless.
  10. UnicornK

    UnicornK New Member

    I sent him a sample of the responses the article got, and I invited him to join, as long as he lets us know who he is.

    I hope that is OK with everyone? I was thinking that if he could get a lot of first hand experience (from us) he could be our "champion".

    It could happen? Who knows?

    God Bless.