Wednesday, September 10, 2008

A little bit about CFS

Chronic Fatigue Syndrome (CFS) goes by many names--chronic fatigue and immune dysfunction syndrome (CFIDS), post-viral fatigue, myalgic encephalomyelitis (ME), and so on. Fibromyalgia (FM) is often associated with CFS. But what's in a name?

I'll be using "CFS" to describe what's ailing me. I dislike the name "chronic fatigue syndrome" because it makes it sound like I'm just tired all the time. And I am, but there's much more to it than that.

My major symptoms include: fatigue, upper body pain, headaches, sore throat, tender lymph nodes, nausea, neurological/cognitive difficulties (word finding, spelling, writing), problems with short-term memory, difficulty concentrating, extreme fatigue lasting several days after minimal exertion, and increased susceptibility to infection.

I am SO MUCH FUN at parties, let me tell you.

Basically, I went from a go-go-go, always on the move, can't sit still girl to near-disability. I used to do yoga five or six times a week. I loved hiking, biking, weight lifting, and so on. I volunteered for Vegan Outreach's Adopt-A-College program. I read, I cooked, I had a life. Now I'm running at about 20% capacity. I used to take 15-mile hikes; now a walk around the neighborhood is about all I can handle. Normally, I'd take this time to sit back and read, study, do something productive at the computer. But my concentration is just gone. Reading itself has become difficult. Yeah, it sucks.

Anyway, the Big Question is what causes CFS. Theories abound. Some morons, er, I mean, doctors claim that it's totally psychosomatic and that we're not really sick. They can go jump off a cliff.

Other docs speculate about the role of viruses, particularly Epstein-Barr (mono), or EBV, and Human Herpes Virus 6 (not genital herpes, btw), or HHV6. There are questions about the role of bacterial infections. Hormones, vitamins, blah blah blah.

My personal theory is that something in your body goes wrong. Let's call that Event A. Event A might normally resolve itself and everything is fine. But in this case, Event A causes Event B. Which combines with Factor C and spawns Factor D and Event E. This goes on to depress immune function which leads to infection with Bacteria F. Then your hormones go nuts and it results in Condition G. In order to fix what's wrong, i.e., get better, you'll need to look at A - G, not just at A.

There is an excellent diagram in From Fatigued to Fantastic
that illustrates this cycle. You can see it here.

Jacob Teitelbaum theorizes that something (maybe Event A) can lead to hypothalamic dysfunction, which causes problems to mount up. I think that this page does a very good job of summing up his basic theory. I know that his website is kind of flashy and it turned me off at first; he kind of looks like a snake oil salesman. However, having looked into his theories and research, I think his treatment protocol makes sense. Get good sleep. Get your hormones to the appropriate levels. Treat any infections (bacterial or viral). Make sure you're getting proper nutritional support. Increase activity, as tolerated. (Jumping the gun and getting too much exercise can and will cause a severe "crash," leaving you much worse off than you were originally.)

This protocol might not work for everyone, especially because so many problems are tossed into the CFS trash can when doctors don't know what else to call it. Just as so many CFS patients are told repeatedly that they are just depressed. Because "depression" is an easy trash can to stick patients in when you don't know what else to do.

I realize I sound cynical, and that's because I am. After getting bounced from doctor to doctor, I'm so happy to have finally found someone who thinks of CFS as a serious illness that deserves treatment. And that "treatment" can come in many forms (sleep, hormones, nutrition, medication, etc.); it doesn't have to come in one magic pill that's advertised on TV.

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