1997: Chronic Fatigue Syndrome; Debilitating and Prolonged
January 1995, and it was just a little flu. Chills and fever for a couple of days, some chicken soup and dry toast, and I was right back at work. Comtrex was the drug of choice. Slowed me down a little but no big deal, just the price of winter. Then I got sick again. Back to the chicken soup. It took a little longer, but I recovered enough to function, although I took a few half-days this time. I didn't feel good, but hey, the world wasn't going to slow down because I had a cold. I added Nyquil, and pushed myself. Then I got it again. It came on really fast and slammed into my body. I left work and crawled to bed, only this time no amount of chicken soup would help. When the chills and fever left, the pain and the flu stayed right there. Weird. It was like I had a six hundred pound rock on my chest and I couldn't move. If I got up, I sat at the foot of the bed and stared at the floor. I lost sense of time. I would hit the clicker now and again. Letterman or Kathy Lee, it didn't matter. Simpson trial.
Barbara brought me to the Doctor, and we did tests. Nothing. There were a few discrepancies in my liver, but that was from the virus. Hepatitis. No. Leukemia. No. Mono? not here. We took chest x-rays and I was scared. Nothing. Then he gave me the good news. " I can't find anything wrong, so you don't have to see me for 30 days". Barbara took me home. I was really sick. Being at work became a vague memory. A week later I was back in the doctors office, and I told him, "I'm sick and you're the Doctor." And that was the first time I heard the words. "It seems like some kind of Chronic Fatigue Syndrome. This could take one to three years." Whoa.
That part about years,... well I didn't hear that,.. well I heard it, but I didn't hear it. And Chronic Fatigue Syndrome, isn't that the yuppie flu? Didn't Newsweek call it a bunch of burnt-out stockbrokers? And Rush Limbaugh, a liberal invention? What the heck was going on? Whatever it was I didn't know.
What I did know was that this Doctor had no course of action, and that no matter how sick I was, I had to take the bull by the horns and find my own cure. A daunting task when healthy. Truly formidable now.
It's been two years. I mostly travel between three rooms and spend many hours a day in a recliner drifting through what I call 'shades of gray', being very flu-like, my brain functioning at a slow crawl. I leave the house sometimes once a day and travel short distances for groceries, banking or the post office. If I drive more than ten or fifteen miles, I come home toast. When I'm active for more than an hour, I'm crashed for two or three. If I break a sweat, I'm bedridden for two days. I always have the flu. Simple tasks require enormous effort and I can't think. My brain is like pea soup. Most normal activities require thinking through sludge. I struggle with simple arithmetic and many times I'm just plain confused.
I've been to half a dozen Doctors, had acupuncture twice a week for months, and pounded down gallons of Chinese herbs. I've given myself a hundred injections and had given to me a hundred more. I'm on a program of the best nutritional supplements known to humankind, and three times a month receive intravenous therapy. It doesn't go away.
It's called Chronic Fatigue Immune Dysfunction Syndrome, or CFIDS. It is a disease with no known cause, no known cure and it lasts for years if not decades. Hundreds of people in Vermont have CFIDS. Nationally, up to 2 million and an estimated 90 million worldwide.
Once called Chronic Epstein-Barr Virus, Fibromyalgia, and Post Polio Syndrome are also classified as 'Myositis Encephalitis' diseases. All share the extreme devastating fatigue, the impaired memory and concentration, the sore throat and tender lymph nodes. But they also include severe muscle and multi-joint pain, new headaches, and extreme sleep disturbances.
We experience what's called non-restorative sleep. This is just as it says. You lay down because you're wasted and wake-up, hours later, feeling no change. Zip. This leads to frustration, anger and depression.
Not only does this disease not appear on a blood test, but its degree of intensity always varies. That's called waxing and waning. If you experiment with a protocol, and end up feeling better or worse, you don't know whether it's the treatment or the natural course of the disease. Try to figure that one out.
And most of all, it's prolonged. It just plain doesn't go away. Degrees of severity vary always, but don't go away. Months,.. years,.. decades,.. forever....
CFIDS is not understood. Many Doctors don't know what's going on. Because 70% of the people who get it are women, it's often discarded as a "chick thing". Really. When young people get it, they're branded as lazy. Working people are assumed to be lying and are called malingerers. Financial resources are stretched to the breaking point. Spouses and family members become disenchanted, relationships dissolve and levels of stress develop that worsen the symptoms and intensify the disease. People who were once vibrant and active just disappear. They get swallowed up by the black hole of disease and then depression. Existence becomes a daily struggle.
Here in Vermont, people with CFIDS have started to find each other. We have begun the process of sharing physicians, treatments, and support. Our small group has grown, we have a mailing list in the hundreds, and we are now official. We are called The Vermont CFIDS Association, Inc. . We can be reached at PO Box 3162 Burlington, VT 05401-3162, and our phone number for messages is 1-800-296-1445.
Our goals are to form a network of health care providers actively trained in CFIDS treatments, and with this network, to establish a CFIDS outpatient clinic. We have direct contact with the National CFIDS Association. We are a clearing house for CFIDS information, articles, letters, theories, books, and in turn are a lending library. We are a place to talk, and we are a place to listen, but we do none of this quickly and we require a bit of patience. Good things take time, and while we easily understand this pace, healthy people need to be trained. We are all volunteers and the network moves slowly. But it moves. And with this tender start we have hope. And we have a growing strength. And we have a future.
Rik Carlson lives in Burlington