Sunday, November 04, 2007

Big Pus Ball Theory of Chronic Fatigue Syndrome

I'm figuring out that the symptoms of chronic fatigue syndrome and fibromyalgia are caused by the body being turned into something like a huge pus ball. Okay, maybe not pus but lymph or something, but that just sounded amusing. Or painful. Because yeah, that's where the fibromyalgia pain seems to be coming from- massive ballooning of fluid all over the body, backing up every part of the circulatory system, stretching and ripping things.

A big pus ball kind of fits into the picture of the yet to be completed Stanford study suggesting that the body is being overrun by viruses. There are two seemingly random things I came across CFS researchers observing and finding strange, so I made a mental note- one that CFS patients consistently had reduced range of motion across the body, and the other that pain and stiffness tended to be located in the left shoulder and chest area. I have to go back and find these references, but they all fit into the puzzle pretty amazingly. A limp balloon is very flexible but a blown up balloon is not.

The big pus ball has been draining ever so incrementally since January. More recently, there's been very clear draining sensations from the brain, in the head, in the sinuses, down the neck, as well as surges of fluid which sometimes hurt and make me hope that nothing pops, rips, or gets stuck in my brain. Sometimes they're followed immediately by perceived changes in brain function, mood, and temperament. And yeah, I'm feeling a bit better, as shown by the slew of blog posts in the last week. My head is deflating. No wonder there are cognitive and psychiatric symptoms associated with the illness.

The PCP has checked in with a message for an update, though I haven't yet replied. Not sure if he has a point since he doesn't offer anything except maybe to see if I've decided to admit that it's time to look into anxiety. After he spoke with the Stanford doctor, he's had less wiggle room and so just doesn't say anything, but doesn't actually admit that I have chronic fatigue syndrome. If I tried to ask for treatment that simply falls into the guidelines for treatment of CFS established by the medical authorities, it would be like pulling teeth. So I get the feeling that he still can't think of anything but anxiety.

I'm actually very surprised that CFS researchers have managed to get the medical authorities to publish guidelines for diagnosis and treatment. Unfortunately it's nearly impossible to find a practicing doctor who actually accepts and uses the guidelines, especially ones that are not considered to be quacks. Interestingly, the quacks actually for the most part follow the standard treatment guidelines, aside from their untested theories on microbial treatment. I've gone through the list of recommended doctors from a large CFS organization and not a single one of them was to be found in my insurance network directory which is probably one of the largest in the country. Google-searching shows that most of them would also be considered quacks by the rest. While perusing Web forums and blogs and asking people who their doctors are, it incredibly seems to come down to about one dozen doctors across the entire country, who both treat CFS and have some respectability in the medical profession. People wait years on waiting lists and travel out of state to get treatment.

I'm wondering if I described how the color of my blood has changed from rusty orange brown, to brownish purple, to creamy dark purple, and then a more normal red though still strangely creamy, correlated with improvement in symptoms, if the PCP and everyone else who thinks CFS is anxiety and stress can still be stuck on that. Does anxiety cause rusty orange blood and ballooning of the body in the absence of perceived anxiety? Maybe. But really?


bluemountainmama said...

another blogger i read, colleen redman, struggles with chronic fatique syndrome and has written a lot about it. she deals with it naturally. her site is . she probably has some kind of tag or category with her postings about it.