"...followed by a brisk mauling."

I have fibromyalgia. For those of you who are unaware of what that is, let me break it down for you:

Fibromyalgia is a chronic condition that manifests through pain, weakness, stiffness, and fatigue. It’s been linked with several secondary disorders such as obesity, depression, and sleep disturbances, but the research is cloudy as to whether these are causes of the condition or primary symptoms. Fibromyalgia pain may be present in any particular area of the body, but diagnostically MUST be present in several pressure points. The pain may migrate around the body, may vary in intensity, and may “act up” or “flare,” but chances are if you know someone diagnosed with fibromyalgia, that person has chronic, sometimes debilitating pain.

Until very recently, many doctors didn’t recognize fibromyalgia as a diagnostically significant syndrome. Most patients were eventually referred to psychiatrists for treatment. Fibro patients are used to hearing things like “psychosomatic” or “it’s all in your head.” But recent studies indicate that fibromyalgia may be linked to actual physiological changes in the brain structure after severe physical or psychiatric trauma—one of the reasons it’s prevalent in both war veterans and survivors of sexual assault and domestic violence. MRIs of patients’ brains actually show the “demented” or “distorted” pain center in fibro patients compared with control groups. These changes seem to do two things: first, they affect HOW the nerves measure sensation—pressure, temperature, most any sensation you can think of, is most often translated into the brain as pain. A hug can be painful (really), as can wearing a seatbelt, or putting your hands in a warm bath, or brushing your teeth, or making love, or even lying down. Second, they affect HOW MUCH the nerves measure sensation. All this pain is intensified. Something which was mildly painful before your diagnosis—say, stubbing your toe—can now hurt enough to make you cry. And remember, all these other things you USED to feel differently? They now register as pain, too. Basically, you’re in a lot of pain a lot of the time.

There’s many treatments for fibro, with varying degrees of success (SSRI and SNRI anti-depressants like Cymbalta seem to help some, as do drugs that target peripheral nerves, like Lyrica. Many patients swear by holistic or alternative treatments such as massage and acupuncture. A steady, low-impact exercise regimen may cut the pain slightly, as can cognitive-behavioral therapies), but there is as of yet no cure. For many patients, this hodge-podge of therapies can make the pain manageable, but that’s not the case for all, and it certainly isn’t the case all the time. When patients are having a flare, for instance, it doesn’t matter how many pills they take or how active they are—the next few days (at least) are going to hurt. Often, the pain (and don’t forget the stiffness or fatigue) is SO intense that taking part in your normal routine is impossible. A lot of fibro patients are on disability, because holding down a regular job with scheduled hours just can’t happen. Those of us who aren’t often find ourselves sticking with a part-time gig, because full-time doesn’t leave us with enough time to rest and recuperate between shifts.

Pain, however, is a relative thing. It’s hard to measure or quantify. We have difficulty expressing our pain adequately to other people, and studies show that even our own brains are faulty when it comes to trying to remember how much pain we felt when x or y happened. Hospitals use a 1 to 10 scale to try to get some semblance of what a patient is feeling, but it’s still quite relative. If you’ve never gotten a paper cut before, a broken toe is going to be at least a 10. If you’ve suffered multiple serious injuries in your life, a broken toe may rate a 7, or even lower.

Today, for instance, is a bad pain day for me. A very, very bad pain day. It’s been a while since I’ve hurt this badly. But this is by no means an unheard-of amount of pain; even with my treatments, this amount of pain is uncommon, but not abnormal. All I want to do is lie down in a comfy bed, put a hot pack over all four extremities, shut off the lights, and sleep until it’s over. But to a lot of people, particularly people who can’t see into my head with MRI-vision, this seems like overkill, to say the least.

So let me try to quantify this for you:

My arms hurt. My legs hurt. My torso hurts. A deep, crawling, in-the-bone-type hurt. My toe joints ache, as does every other joint in my body (I’m writing this with speech-recognition software because typing hurts too much). Spreading my legs just wide enough to pull my pants up aches. When I breathe in deeply, my chest aches. My gums, sitting in my mouth, just chillin’, ache. My eye sockets ache, as do my inner ears. When I move my head from right to left to see something, it hurts. When I move my EYES from right to left to see something, it STILL hurts. It feels like I have a high fever, like I’ve got the flu (the real, scary, pneumonia-like one). I didn’t put on a bra until I left the house today, because it hurt too much to wear. I spent about twenty minutes shifting and crawling—literally crawling—out of bed because I was so stiff when I woke up, and then spent another fifteen trying to decide between fairly loose jeans and a pair of drawstring pyjama bottoms (I went with jeans, because I couldn’t loosen the drawstring enough to relieve the pain without the pants falling down). If I’d been scheduled for work, I’d have called out—despite the fact that I’ve already done so enough times that I’m liable to lose my job. Luckily, I still had some Tramadol left over from my spinal surgery, so I took a max dose of those, a max dose of Tylenol, and took it fairly easy for the day.

Now, I’ve said before, of course, that pain is relative. And it’s quite possible that I’m just a big ol’ crybaby. But let me be clear here for a second: I met Pain early in my life, and we’ve stayed in touch. I split my head open twice before the age of seven. I’ve been beaten more times than I can remember, and sometimes those beatings resulted in broken bones. I’ve been stabbed and worse, and done the first aid myself, without any IV drugs or even brandy to give me a hand. I’ve had my inside bits sucked out with a glorified vacuum cleaner (it’s a legitimate and legal medical procedure). I may be a whiny little wuss who complains constantly, but I KNOW pain.

And the rest of your fibro/chronic-pain-diagnosed friends do, too. We don’t sit on the couch or stay in bed all day because we’re lazy or want attention, we do it because we physically can NOT do anything else. We’re adults (for the most part) and we’ve lived with our pain for quite a while—we know our capabilities and our limits, and sometimes we have to make choices that don’t seem like the right ones. But we do it because it’s all we CAN do. We’re not fuddy-duddies or Negative Nancies (much), and we really do enjoy spending time outside the house, hanging out with friends, going to concerts or picnics or shopping or hiking or any number of fun and interesting things. But sometimes we just don’t have the energy or strength to do the things we enjoy.

So please, the next time you want to cajol us up out of the chair, or give us a little tough love in hopes that we’ll get out there and do things, DON’T. Offer us the chance, and let us know you understand if we can’t. Try, if you can, to imagine how you felt the last time you were really, terribly, super-de-dooper sick. Try to remember that when we say we hurt, we mean it. Remind yourself that just because you can’t see our disability (it is encased in a skull, after all), it’s still there regardless.

And for fuck’s sake, please, for the love of all that is good and holy, stop telling us “the pain’s all in your head.” We KNOW. That’s the problem.

Tickets were sold (and sold out) to John Dillenger’s autopsy. His cult of personality had grown so large that his remains were interred incomplete; during the autopsy, an unknown person stole his brain.

Never give up control. Live life on your own terms… I’ve been living with cancer for over a year now. Right from the start, they tell you it’s a death sentence. Well, every life comes with a death sentence.

- Bryan Cranston, Breaking Bad S4x08, “Hermanos”

After two very expensive, very panic-inducing tests, the verdict is (drumroll please)… ocular hypertension with non-glaucomic visual field (periphery) loss. Which makes no sense whatsoever unless I ALSO have MS (which I don’t). Also, increased pain med dose is kicking my behind, as is this migraine. But on the plus side, all you Farmington peeps—I GET TO SEE YOU TOMORROW!

Seriously: Big plus side! ^.^