Imagine a spot on the inside of your right ankle, directly antipodal to the bone on the outside of the ankle that juts out into a nice little ankle atoll. If you’re wearing women’s athletic socks, this spot is probably just covered by the elastic at the top of the sock. It’s bony, but just millimeters away is a softer, tendon-rich spot.
Well, on me this spot has a metal skewer sticking out of it. At all times. It hurts when I walk. It hurts when I don’t walk. (Doctor, doctor, my ankle hurts when I pee! What kind of reaction do you think I get when I say those words out loud? Now do you understand why I sometimes use bad words when I talk about doctors?)
There’s a spot just below my left knee. Not in back on the calf or in front on the shin, but halfway between. If my knee were a clock and the patella was the number 12, this spot is at about 1:45. Touch me here and I will kill you.
My left quad is an interesting beast. Touch that muscle and I’ll scream (as the last doctor I went to learned, shortly before he went out to the receptionists’ desk to recruit an objective female witness to supervise the remainder of the exam). But just to prove that the universe really is a bastard sometimes, keep in mind that I sustained several injuries to the right side of my brain, which controls the left side of my body. One of the many consequences of these injuries is that I bump into things with the left side of my body a lot – and many of the things I bump into hit me at about quad height. And the thing about fibromyalgia pain is that it sticks. Bump into the arm of the futon when I’m leaving the house at 7:30 in the morning, and I’m still feeling that sucker at my after-school faculty meeting.
One of the reasons I was never much good at yoga was the fact that I couldn’t stop giggling whenever they said “sit-bones.” It’s just such a stupid word – but this stupid word happens to be pretty useful in describing yet another one of my body’s mother lodes of pain. Imagine putting your hands on your shoulder blades and then sliding them down to the space between your kidneys and the tops of your buttocks (not that I would ever slide my hands in this fashion – I would never stop screaming if I did. But you get the picture). In fact, this pain is the only thing that is making my twice-daily routine of leglifts during the past week unpleasant. Apparently I retain enough muscle strength in my abs and back to do the exercise fairly easily. But lying on my back on the floor with twenty thousand cubic tons (or thereabouts) of pressure focused on that spot that isn’t really either bony or fleshy but is just really, really painful makes me long for a nice bed of nails so that at least the torture would draw some blood and then maybe a doctor would take me seriously.
Yesterday I wrote that one of my goals in this entry was to understand my pain more after I finished writing than I did before. Well, something of this sort just happened. All bodies are made up of a variety of substances and structures: bones, muscles, organs, tendons, blood vessels, ligaments, etc. Well, in my body it feels as if PAIN has been added to this list of tissue types – as if it exists as its own separate category. My body has bony parts, muscular parts, and pain parts. And just as body fat and muscle mass can be measured in percentages, my pain percentage has doubled, tripled, quadrupled since I first began suspecting that something might be wrong.
I am aware of the presence of my spinal cord. Most of the time this area isn’t a major source of pain. But you aren’t supposed to go through life feeling constantly aware that you have this sinuous, gently undulating thing slithering through your back, rubbing up against your tissues, your organs, your blood vessels, and whatever the hell else it wants to rub up against. My spinal cord is unaware that its contract called for it to be a silent partner.
The rib cage, both sides. Our ribs exist to protect the delicate organs of the chest: the heart, the lungs. So who is left to protect the ribs? Nobody but a bunch of high-priced pharmaceuticals who only work when they feel like it. (Seriously, someone needs to break up that union. Where’s the governor of Wisconsin when you need him?). In my martial arts training, my teacher used to have us practice the spinning hook kick while we were standing in a doorway in order to train us to execute this maneuver in narrow spaces. I may be out of shape, but if you touch me along the rib cage, even with just a little bit of pressure from the pad of your thumb, I might find that I have one more of these close-range hook kicks left in me.
(Occasionally people ask me why I don’t date and why I don’t seem particularly anxious to find a husband here at the sensitive age of thirty-six. You’re figuring it out now, right?)
My chest, shoulders, and upper back ache at their transition points – at the places where muscle meets bone. Sometimes there is something almost pleasurable about this pain – as if I could close my eyes and almost feel that the pain comes from something good, like a hundred push-ups or a long, hard swim. I would say that this pain is my favorite pain. I think I’ll name it “Fluffy.”
The pain in my arms and hands almost always takes the form of a surface pain, almost like a cross between a sunburn and a bruise. This is not to say that it is milder than my other agonies; in fact, if I had to list the forms of pain that are most debilitating, that most often prevent me from sleeping, getting work done, and generally functioning as a nice, polite adult out there in the world, my arms would be number 3 on the list, right after my neck and the crescent on my face. Last night I lay awake for hours feeling my upper arms just burn and burn.
My neck is really my trophy in this whole medical odyssey. My next has been x-rayed and MRI’ed all over the place. It’s been poked at by orthopedists, neurologists, physical therapists, two general practitioners, and any number of “holistic practitioners” (a.k.a. pill dispensers). Doctors may not take hysterical women very seriously, but they do tend to shut up and pay attention when we use the magic word “neck.” Back in 2008 I actually bought a dog bed and put it in my bed in place of the pillows and slept on it because a doctor convinced me that the only reason my neck hurt was that my pillows were too small. What does my neck feel like? Well, like a Roman ruin, actually. The tendons and other stringy, structurally-important things in there have essentially turned to cement, and, while no x-ray or MRI has ever confirmed this, I’m convinced that a few of them have actually crumbled to pieces and are sitting around taking up space in there, like Aphrodite’s head after a visit from a team of friendly iconoclasts. Of all the places that my body hurts, my neck is the only one that really makes me feel afraid. “It feels like it’s going to break,” I’ve said to my massage therapist on many occasions as she gently stretches my neck. “Not the bone. I mean all the other stuff – the stuff that’s turned into bone.”
Having such constant and severe neck pain is also one of the most socially aggravating parts of having fibromyalgia, because everyone thinks he can relate. Oh, my God, people say. I hate it when that happens. I slept wrong the other night and my neck wouldn’t stop hurting all day. Really, people? To be honest, sometimes I sleep on my neck the wrong way too, and when that happens I have no problem separating the two kinds of pain that I experience side by side: the I-slept-funny pain and the Aphrodite’s-head-is-clogging-up-my-spinal-column pain. They’re not the same thing. Trust me.
One of the early false starts in my diagnostic process came from an orthopedist who thought I had a fused occipital-axis joint. The O-A joint is the place where the spinal cord joins to the brainstem, and apparently they can FUSE, meaning that every time I moved my head, little pieces of spine poked me in the brain. Try to get a decent night’s sleep with THAT image in your mind, dog bed or no dog bed. After this diagnosis, I went through a pretty intense course of physical therapy that did actually seem to do some permanent good for the back of my neck, which still gives me trouble only when I have migraines and when my neck pain is especially severe. But maybe – actually – a member of the medical establishment actually did something right about the occipital-atlas thing? Maybe.
I think of everything I’ve just described as the “big stuff” – the large body parts and muscle groups in which I routinely experience pain. But the big stuff is not meant to mitigate the constant presence and the aggravation of what I like to call “the little pokey spots.” They can pop up anywhere: on a toe, on an elbow, on my chin, on my scalp, behind an ear, or – best of all – right on top of one of the muscle groups that also hurts. Having fibromyalgia is like having hundreds of little fontanels all over your body. I never know which spots are going to pain me on a given day. The best I can do to describe these is to say that they are like bruises: they often hurt even with no pressure at all, but if I touch them, they really hurt. And that’s a fairly accurate description. But I have a feeling that if I remembered what it felt like to have a fontanel and then to get poked in it by a nasty older kid who wished me dead, that description would be even more apt.
And now, the best for last: the right eye socket and the crescent-shaped spot ranging from my right eyebrow to the jaw. This is what it’s all about. The Mona Lisa of fibromyalgia. This pain is almost always with me. Sometimes it limits itself to the temple and forehead – those are the good days. Other days it clusters up in the jaw area. Most of the time, though, the eye gets involved. Picture the orbital bone around the eye – now imagine it bruised down to its very core. The eyeball itself pulses and throbs. Looking at anything hurts. Driving is agony, and I become a danger to anyone else who is out on the road, not because I can’t see but because I know that at any moment I could just give up, crash the car into whatever is handy and gouge my eye out with my own fingers the way I was taught in martial arts to do to anyone who intended to use physical violence to compromise my life, health, or dignity.
Imagine my surprise when I found this passage in 1984:
“Winston was gelatinous with fatigue. Gelatinous was the right word. It had come into his head spontaneously. His body seemed to have not only the weakness of a jelly, but its translucency. He felt that if he held up his hand he would be able to see the light through it. All the blood and lymph had been drained out of him by an enormous debauch of work, leaving only a frail structure of nerves, bones, and skin. All sensations seemed to be magnified. His overalls fretted his shoulders, the pavement tickled his feet, even the opening and closing of a hand was an effort that made his joints creak.”
If anyone is enrolled in a multidisciplinary Ph.D program combining literary history with medical science and anthropology (you know, all those programs where people sit around trying to prove that Sappho had tertiary syphilis – surely I’m not the only one who wants to be in a Ph.D program like that?) and is looking for a dissertation topic, figure out how Orwell knew to write this. Sure, everyone’s been tired and overworked, but “gelatinous with fatigue”? “Translucent”? Not to mention the magnification of sensations and the feeling of the overalls fretting the shoulders: this guy knew his way around a busted nervous system.
And so do I.