First rule of fibromyalgia? Don’t talk about fibromyalgia.

First of all, I would like to say that I have not even seen or read that Fight Club thing from whence I stole the title. But I thought it up in the shower today for this post I had started and it seemed fitting.
 If it is not fitting, don't blame me. I didn't see the movie.

A blogger I enjoy is leading a panel at BlogHer on Chronic Illness and because of that I found this site: Chronic Babe.

And because of this, I found THIS ANNOYING SALON.COM ARTICLE.

And this KICKASS RESPONSE.

I think my favorite part of the Feministe response right there is this little tongue-in-cheek bit:

What could possibly be more vague than widespread muscle pain for
more than three months, combined with the presence of at least 11
tender points over 18 muscle groups?  Doesn’t pretty much everyone have those symptoms?

Oh, no, wait.  They don’t.

Immediately after the hateful little diatribe quoted above, Burton
then has the nerve to write this patronizing and disingenuous sentence:

By the way, I don’t mean to denigrate patients who experience pain associated with fibromyalgia.

Fuck. You.

Bwa-hahaha. Indeed.

I mention this part of the article not only for the excellent use of the F word, but for the part where the writer points out that not everyone goes around in pain all the time. Because that's HUGE for me. I seriously spent the first 29 years of my life assuming that everyone hurt at least a big part of the time and that I was just in pain because it was normal to be in pain and that I was a wimp for worrying about it. I assumed this because I came from a family of chronically ill and also hypochondriacal people. I assumed this because the doctor I went to at age 17 for my back pain told me I was too young for back pain (though you should have seen the narrow-eyed, fierce look of EXTREME HATE AND FURY I gave him. I swear to you he backed out of that room babbling nonsensically, such was my ability to terriify with my EYES). I assumed everyone hurt and was just better at hiding it, because no one seemed to care very much that I HURT all. the. time.

And when you hurt ALL THE TIME, you do eventually get used to it. There was a level of pain that I was used to, usually involving back pain, from when I was a teenager. It was the new pains and weirdo symptoms that sent me to doctors again in 2004. This time I was lucky to have really fabulous female doctors who never, not once, made me feel strange or stupid for asking what the eff was wrong with me. I was amazingly fortunate, as most fibromyalgics have very different diagnosis stories.

Mine was this: I had just had a major mental breakdown and was living for one month in a crazy sublet in Sunset Park that I hated and that gave me asthma attacks every damn morning. I had to walk about two miles to get back to my neighborhood to do stuff. I started to notice that walking really hurt my feet. I blamed my shoes. I blamed my lack of mobility during the past months of winter and depression. I blamed all sorts of things for the way it felt like the bottoms of my feet were covered in bruises. And then I just got so tired. And then other things started hurting a lot. And so I mentioned it to my doctor and she ran blood tests. They found this yucky autoimmune marker that often means lupus but she ran more tests and said not lupus and sent me to her friend the rheumotologist. Who immediately diagnosed fibromyalgia.

During the month I was diagnosed and the months following, it kicked in hardcore. I discovered that physical activity, anything above a mild walk around the block, caused severe symptoms the next day. Moving something heavy resulted in my arms turning into rubbery worms of ache for at least a day afterward. Walking too far made my knees start to buckle without warning. I bought a cane and occasionally had to use it at night if we were going out. I was put first on a lowdose SSRI antidepressant (funny since I had just been on every SSRI combo imaginable during my breakdown to no avail – SSRI's do nothing for me for mental or physical pain) and eventually found myself with a prescription for Flexeril, a muscle relaxant that helped me get restorative sleep and helped my body behave itself most of the time.

There were still moments. I used a cane when we went to Spain (where the rain fell on the plane?). I once felt my body course with sudden muscle-locking pain while i was sitting at my desk, brought on from laughing with my colleagues, perhaps? I started to sob at my desk because the pain was so intense up my spine. I had to be helped to the nurse's office and my friend Asia had to come get me and drive me the two blocks home because I could barely walk.

But for the most part, Flexeril really took care of it for me and its only side-effect was sleep-of-the-dead, which was fine by me.

I knew I couldn't really stay on it when I started trying to get pregnant. The year and a half it took to conceive were marked by a lot of bodily pain to go with the emotional stuff. And I took my pills when it was really bad, in between cycles.

Then I got pregnant. And while I did suffer approximately EVERY hideous pregnancy symptom known to man (numb thigh for five months, swelling so intense it mimicked a sprained ankle on an ER x-ray and required the use of crutches (FOR A PREGNANT WOMAN – picture it, please), intense heart burn from the pregnancy I miscarried through the four months in between and on through the entire pregnancy with Beck (one solid year of heartburn), severe back and neck pain, round ligament pain, did I mention the swelling 'cause my feet were truly a wonder to behold and not at all human. Wait. Where was I?)…

my fibro went into remission during pregnancy. I didn't have wormy pain or bruisey pain or anything other than pain which could be clearly cause by my gigantic midsection and its bodily effects.

Three months postpartum, like clockwork, the worms returned.

Something hurts most days. My fibro is not generally as bad as it was before Beck but some days it is. I credit some of the improvement to the exercise I get with Beck (a couple miles of walking most days) and with my daily two miles of commute walking during the school year. Very mild exercise is a good helper of fibro but I never had much discipline about it (swimming, for example, would involve either arriving at school at 6:30am, or returning there at 6:30pm, and spending a mere 15 minutes in the water after all that pre-showering and with all that post-showering to be done… bleh).

I credit some of the improvement to the fact that I just don't talk about it very much.

When I was going through the Reading Phase after my diagnosis, the most helpful book I read was Pain: The Fifth Vital Sign by Marni Jackson. I am sad to see that it seems to be out of print. Still, copies can be found. If you live with pain, I highly recommend it. It is not at all about how to get rid of pain. Rather, she explains what we know (and don't know) about pain itself and how society has viewed it and dealt with it throughout time. The most amazing thing I learned from this book was this:

The distinction between "mental pain" and "physical pain," our
legacy from Descartes, has led to a punishing skepticism about "real"
pain versus "invented" pain. The specificity theory describes pain as
an event in the periphery of the body that is open to interpretation, and
distortion, by the mind; pain that couldn't be connected to an injury or some
sort of organic cause was "psychological" and therefore suspect. This
theory doesn't account for why one person can be more sensitive to pain than
another, and it led to the belief that the intensity of pain is always in
direct proportion to the intensity of the stimulus. But the lightest breath of
air on the skin can cause severe pain for someone suffering the neuropathic
pain known as reflex sympathetic dystrophy (RSD). Long after recovery from an
injury, people with RSD can suffer chronic pain, to the exasperation of their
doctors. The specificity theory made it possible to blame people for their own
pain. Descartes could be called the father of malingering.

- From the excerpt on Ms. Jackson's site.

Fucking Descartes, man. Just what I needed: another reason to hate philosophers.

The reality is that our bodies often experience mental pain and physical pain in the same way. Serotonin and other chemicals that spell happiness are also chemicals that help pain go away. Notice that they often give low dose SSRI's to fibro people? It's not going to cure your depression, if that's what's going on, because the dose is so low. It's working on your body (if it works) to make your pain go away. Mental pain, physical pain = bodily changes and chemical reactions, either way.

This was huge for me. Because it's hard to get past that whole Medical thing where PAIN has a REASON. Nothing was injured so why did I hurt? It now seems clear to me that something is wonky in my brain. Maybe it's the same wonkiness that caused depression and breakdowns and makes me such a raging hellcat loveable cherub to be around.

But the bottom line? Whether you can run a test and discover a problem, whether you can find a source of injury or not, whether you can see what is wrong with me or not…

SOMETHING is wrong with me. And I hurt. And my pain is real. And no fucking writer or doctor can say that it isn't.

I do not keep up on fibro research like I should. I have not investigated the new drug, Lyrica, at all yet, knowing I wouldn't try anyway until weaning. There is a good chance I would first get my Flexeril prescription back and try it on a more as needed basis since I know it works and doesn't have any side effects for me. But I do hope to get back on something to help myself when I need it. I need it far less. I haven't used a cane in years and was surprised to find the snazzy one I bought in Spain when searching for something in the closet recently. It seemed like another me. And no sooner did I think that then I found my knee buckling as I crossed the kitchen the next week. I haven't been able to properly turn my neck in about six months. Today I woke up with intense unexplained knee pain that sort of cleared up by evening. Right this minute my lower back is screaming in agony for no reason at all – I am sitting up straight and have a pillow behind me, and still it complains.

But I do not. I have worked hard to get to a place where I let Wes know when I am hurting but do not harp on and on about it. When I was first diagnosed and when the pain was so bad, it felt like all I ever did was complain. And it felt like that for Wes, too. Then I would feel wounded when he said something about all the complaining, and would try to suck it up and say nothing. But that didn't work either because you can't go around in agony without it affecting your mood a bit. So I would snarl and bite his head off for supremely minor offenses. Or I would shut down and stop listening and curl into myself, unable to handle communicating. I learned that it was imperative that I let Wes know if I am having pain, especially if it's a bad day, and let him help me a bit more but to try not to mention it too much after the initial alert.

Sometimes I inhale sharply when pain surprises me as I climb the stairs at work. Sometimes I limp just a little as I walk. Sometimes my arms turn to spaghetti and I just physically cannot hold Beck anymore and he slides furiously down my body, holding his feet up to avoid touching the ground as I try pathetically to explain that Mommy just can't hold him anymore. If I am lucky, I am with Wes in those moments and he can hold him instead. But often I am not and we just stand there until he chooses stroller or walking. If we Ergo him, I can only do so for a brief time and then Wes Ergos and I carry our tiny downsized backpack version of a diaper bag instead, our normal messenger type bags being impossible for me to carry for any length of time.

I've had a fibro diagnosis for five years now, I don't attend support groups or read message boards and I am not on any drugs. I hurt every day. You probably wouldn't know it.

But fuck you to any one who tries to say it doesn't exist. Seriously fuck you.