This is not an easy disorder, not in any way. Living with it is one thing, the diagnosing process is another level of hell altogether.
For me it started when parts of me began to fail, seemingly unrelated to one another. I messed up my Achilles tendon by walking around too much, (it would creak, audibly, if I tried to move it. Super gross. Also, it hurt like crazy). The fluid had apparently started to solidify in the tendon, because why not? Then I developed what one doctor decided was frozen shoulder. Instead of creaking it would click, but pretty much the same deal as the ankle. No idea what caused that. Then, also out of nowhere, my wrist went on strike. At this point I was on a first name basis with every physical therapist in the clinic, hanging out with them four to five times a week. But nothing is getting better, if anything, as the winter progresses, I was getting worse! I was finally referred to an amazing rheumatologist who, working with my equally amazing primary care doctor, started to look at the whole picture. I went through every test they could think up, from x-rays to MRIs, CT scans to ultrasounds. Luckily they did such a wide range because after one morning’s CT scan I received a call from my primary care doctor. She told me that apparently my appendix was inflamed and we needed to do emergency surgery that same day. Now, I realized this was a life threatening situation, but did it have to be that day? That evening I had tickets to the Bulls game that my boss had given me months before. I had been dreaming of this game, against LeBron and the Cavs, seats just off the floor. But no, my body decided today was the day it would begin it’s new plan of attack. Operation Spontaneous Combustion I think it was called. Luckily, my doctor was on top of things and thwarted the first attack, and LeBron didn’t even play, just watched us kick their butts from the sidelines. So it could have been worse.
After recovering from the surgery I went back to my rheumatologist to discuss the results of all the tests. He ruled out rheumatoid arthritis, celiac disease, and a bunch of other, more reasonable disorders. Finally he said there was one more test to try, now that everything else was off the table. And he proceeded to push me, with his fingers, on eighteen points of my body. You read that correctly. Each point he asked if it hurt, at each point it did. And that was it. That is the test. If you hurt in at least 11 of the points then fibro it is! It does make sense that this is the last “test” they do, once everything that may be a possibility is ruled out, but this whole process just makes you feel insane. As each test comes back negative you fear more and more that maybe you’re just crazy, maybe everyone feels like this and you’re the only one who can’t take it. You have these late night inner monologues that revolve around the conundrum, do hypochondriacs know they’re hypochondriacs? And then, finally, the one test that comes back positive…and that’s it? All those fancy machines and technologies and the answer could only be found by poking me like a little sister in the back seat of long car trips?
But, at least I had an answer, even if not much is known about this disorder, it’s still something. Every year they learn more and the treatments and the tests will get better, but for now this is what we’re stuck with. It’s hard not to laugh at the situation, or cry, but I like to choose laughter. This disorder won’t kill me, it will just make life more difficult, so focusing on the ridiculousness of it all makes it easier to handle. Of course, there are days it is easier to laugh than others, and looking back at the beginning of this experience is a lot more pleasant than when I was living through it. At least now I’m on medications that keep it relatively under control without crazy side effects, and for the most part I’ve learned how to read my own inner body language, so it’s nothing I can’t handle. Some days are better than others and today is a good day, so I’m going to go enjoy it.