Chronic fatigue syndrome feels like this:
You've been awake for three days straight. You're slogging through wet cement with a 100-pound backpack strapped to your shoulders. You've got a persistent headache and sore throat. Your bones are useless, and your memory is fading — you can't recall what you just said, and you often forget what you're about to say next.
"It's debiliating," said Willow Hecht, 28, of Clearwater, who has suffered from CFS since 1999, her freshman year of college. "It's crushing fatigue, like complete physical exhaustion, like I can't stand up, anymore."
It's a condition that many don't understand. But this week in Tampa, CFS takes center stage.
The Tampa Museum of Science and Industry is in the midst of a weeklong photo exhibit titled "The Faces of Chronic Fatigue Syndrome," featuring portraits of CFS patients and doctors. And on Monday, the Chronic Fatigue and Immune Dysfunction Syndrome Association of America will bring a slate of experts to Tampa for a daylong "education and empowerment" seminar.
About a million American adults suffer from the condition, symptoms of which range from mood swings to joint pain to flu symptoms. No one's sure what causes it, which explains why it goes undiagnosed in more than 80 percent of sufferers, according to the CFIDS.
For Hecht, CFS is all-consuming. She can only work for 10 to 15 hours per week, and spends much of her time at home reading on the couch. Even standing to make dinner is painful. She's tried many medications and alternative therapies, but so far, all she's been able to do is trim her daily nap from four hours to three.
She said she constantly battles the perception that CFS is a made-up disease, that she's simply lazy.
"People always joke around with me and say, 'Oh, I'm tired,'" she said. "Fatigue is not something that a healthy person would ever feel.
"Basically, I'm operating on a quarter of the energy of a healthy person, all the time."
The CFIDS Web site has a questionnaire for people who think they might have CFS. Among the questions:
• Have you felt generally "unwell" for three months or longer? This is where "chronic" comes into play. If you feel constantly run-down, you should get checked out. If it's been six months and you're still not feeling any better, you might have CFS.
• Do you have at least four of the following eight symptoms? Weakness and exhaustion lasting more than 24 hours; unrefreshing sleep; short-term memory or concentration problems; muscle pain; joint pain (without swelling or redness); unfamiliar headaches; tender armpits or lymph nodes; or a recurring sore throat.
• Did your feelings of unwellness gradually become worse until you had to make major changes in your life? CFS often comes on suddenly, or at least over several days. You're feeling fine, and then boom, your body starts to slow down. Hecht said she suddenly felt crushed, unable to move, and had to call for help to get up.
For more info, visit CFIDS.com.