article on CFS sufferer from the Catonsville Times

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Jun 18, 2008.

  1. Bluebottle

    Bluebottle New Member

    Finding the energy for daily activities a strain for resident

    By Scott Weybright
    Posted 6/18/08
    Aggie Sanders used to jog daily, go to work as an oncology nurse at St. Agnes Hospital and host weekly dinner parties for family and friends.

    Now the 53-year-old barely has the energy for an hour-long conversation.

    The Foxhall Farms resident has chronic fatigue syndrome, an illness she first developed more than three years ago.

    According to the Centers for Disease Control and Prevention's Web site, the illness is "profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity."

    Neither the definition nor the name do the disease justice, Sanders said.

    "It makes it seem like something very ... " she said, pausing to consider her next words. "Maybe a little bit worse than a cold," Sanders said as she continued. "Fatigue doesn't express what this feeling is. It's like, fatigue is to chronic fatigue syndrome the way splashing in the bath tub is to a tsunami."

    Next week, the Maryland Science Center on Light Street in Baltimore will host an event to help raise the public's awareness of the condition.

    A traveling photo exhibit called "The Faces of Chronic Fatigue Syndrome" will be on display June 23 through 29 in the BodyLink Gallery at the center.

    Sara Collins, a spokeswoman for the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, said the exhibit helps show an illness in which most victims "don't look sick."

    The exhibit includes the stories of what eight people living with chronic fatigue go through.

    "The exhibit is very dramatic and moving," Collins said. "It really shares a lot about what these people experience having chronic fatigue syndrome."

    For Sanders, that experience meant the loss of her career, months without leaving her bed and guilt for the stress the illness placed on her family.

    She and her husband, Michael, have three grown children, two daughters and a son.

    Sanders first became sick while in Nashville for a nursing conference in November 2004.

    She thought she had a case of burnout and the flu and tried to fight through it. But the level of fatigue she felt was frightening, she said.

    "It was like this heaviness just came over. It felt like somebody had just poured cement into my legs," Sanders said.

    When she returned home, she tried to continue working.

    But her fatigue forced her to cut back her hours.

    Eventually, even that became too much.

    "February 16 (2005), I was at work and I just basically collapsed. A nurse there had to kind of throw me in her van. I don't even remember, truly. But she drove me home and I went to bed," Sanders said. "I didn't get up for a couple of months."

    She tried to return to work a year later when she started to feel a little stronger. That attempt brought on a relapse of the illness and several months in bed.

    Sanders eventually had to give up her job.

    About 25 percent of the estimated 1 million to 4 million Americans who suffer from chronic fatigue syndrome can't continue to work, according to Dr. Peter Rowe, director of the chronic fatigue clinic at Johns Hopkins Children's Center.

    Rowe, who specializes in adolescent cases of the disease, said the range of people thought to have the disease is so wide because many cases go undiagnosed.

    The illness has a somewhat negative connotation, since people don't understand that it's more than just feeling a little run down, Rowe said.

    "One of the parents of a patient I was treating said, 'It's true that chronic fatigue syndrome isn't life threatening, but it takes your life away.'"

    Researchers don't know the exact cause because it has a variety of starting points, he said.

    Rowe said it may be genetic because he's seen it in families, but researchers haven't found a specific gene for it.

    The disease is often triggered by another illness, such as the Epstein Barr virus, a type of mononucleosis, he said.

    That's how the illness started in Sanders, although she thought it was just burnout from her physically and emotionally demanding job at the cancer center.

    She said she's since learned to change her expectations and even her personality.

    She said she's learned to monitor her activity and only do things for five to 10 minutes, then rest.

    "You've got to figure out how to be happy," Sanders said. "Because you can't say, 'I'm going to wait. I'm going to be happy once I'm all better.' Because I might not feel better.

    "The extrovert has to learn to live like an introvert. The social butterfly has to learn to live like a monk."

    According to the Web site for the Centers for Disease Control and Prevention, some people with chronic fatigue syndrome remain homebound while others can resume work and other activities.

    Recovery rates are unclear and full recovery is rare, according to the site.

    Next week's special exhibit is included in the price of admission to the Science Center. Cost is $14.50 for adults, $13.50 for seniors over 60 and $10 for children 3-12.
  2. TeaBisqit

    TeaBisqit Member

    Thanks for posting that. Finally, an article that doesn't focus on someone who claims they were only sick a few months and is suddenly well enough to go on cross country family outtings.
  3. PainPainGoAway

    PainPainGoAway New Member

    So true...especially the fact that CFS may not be life threatening, but it takes your life away...
  4. gapsych

    gapsych New Member

    for a very good article. Gosh they did not even say anything about psychological factors. My mind can not process this as it is too stunning.

    Does anyone know how you can get this exhibit in your town? I guess I need to google this.

    Thanks so much for this article. It was certainly a breath of fresh air and not the same old stale air that we usually get. LOL

  5. stschn

    stschn New Member

    Thank you I't good to know that the photos we sent in are really used to help get our story out.
  6. Empower

    Empower New Member

    "One of the parents of a patient I was treating said, 'It's true that chronic fatigue syndrome isn't life threatening, but it takes your life away.'"

    so true, so true

  7. PainPainGoAway

    PainPainGoAway New Member

  8. Bluebottle

    Bluebottle New Member

    Yes, it is life threatening - a number of people have died of it, including Sophie Mirza and Casey Faro. It is reckoned to shorten life by an average of 25 years:

    From Adrienne's Fibromyalgia & Chronic Fatigue Blog:

    Prevalent Causes of Death Linked to Chronic Fatigue Syndrome
    Thursday August 2, 2007
    Chronic fatigue syndrome is a debilitating condition. The estimate of how many people are affected varies depending on the source. Researchers are studying various aspects of chronic fatigue syndrome but there have been relatively few studies looking at the cause of death of people with the condition.

    Authors of one study, published in the journal Health Care for Women International (2006 Aug; 27(7):615-26), reviewed a memorial list of 166 people with chronic fatigue syndrome. The list was kept by the National CFIDS Foundation. Of the people on the list, there were three times more women than men. The most prevalent causes of death, accounting for nearly 60 percent of deaths of people on the list were:

    * heart failure
    * suicide
    * cancer

    It was also determined that the mean age of chronic fatigue syndrome patients who died from cancer or suicide was significantly younger than people dying from those causes within the general population.
  9. jasminetee

    jasminetee Member

    As it stands right now I wonder if some people who disappear have actually died and we don't know it. The NCF is keeping track of people with CFS who die for any reason as best they can and they report it in each newsletter. I hope everyone here has someone who can contact them and then let them know who they were here. I think of you all as family now. :)