I have been organizing old files and stumbled across this. Written during my second and final attempt at attending university, July 2005.

Purpose Statement: I want my audience to understand fibromyalgia.

Organizing Question: What is fibromyalgia?

Introduction: When I woke up in the morning on October 5 last year, I couldn’t even lift my head. My neck hurt so bad that I couldn’t stand to move it in any way. That day was the day of my midterm in this same class, but because of extreme pain and exhaustion, I hadn’t been able to bend over a book to do my reading since mid-September. I was in no condition to walk to class, much less bend over the exam—and I had been this way for three weeks. The reason I was having so much trouble? I have a condition called fibromyalgia.

Preview Main Points: Today I will be going over the symptoms of fibromyalgia, some misunderstandings about the condition, and finally the biochemistry as we best understand it today.

1. Fibromyalgia is a condition that causes widespread pain and fatigue.

   1. Chronic pain: It’s everywhere, and it never stops. There’s a constant, dull, all-over background pain. Overexertion pains—random pains. Stabbing pains, shooting pains, throbbing pains, aching pains, searing pains, burning pains—think of every pain you’ve experienced in your life, and cram all that pain into a month. That’s probably a light case of fibromyalgia.

      1. Dr. Devin J. Starlynal, a fibromyalgia/chronic pain specialist, published her book Fibromyalgia & Chronic Myofascial Pain Syndrome: A Survival Manual in 1996. She says, “Chronic pain states are quite different from acute pain states. When you know the pain is eventually going to end and that you will recover and the pain will be gone, it is easier to tolerate the misery…. You do not ‘get used’ to the pain if you have a chronic pain condition. It becomes harder to endure.”

   2. Fatigue. When you think of fatigue, you think of being tired. The fatigue that comes with fibromyalgia is far more than just “tired”—it’s a state of near-absolute exhaustion, feeling like not one bit of energy is left in your body.

   3. Other symptoms and related conditions: Migraines, cognitive difficulties, Raynaud’s (extreme sensitivity to hot and cold), depression and anxiety

2. Fibromyalgia is often misunderstood.

   1. FM is often cited as a musculoskeletal condition, an inflammatory condition, or rheumatic. All three of these descriptions involve actual injury or dysfunction within the muscles, bones, and joints. Fibromyalgia directly affects none of these.

   2. FM is not the same as Chronic Fatigue Syndrome. The two syndromes are related, but continued research has begun to separate their causes, their functions, and their effects. FM has been called a condition of “physiological hyperarousal” while CFS is described as the exact opposite.

   3. “It’s all in your head!”

      1. Dr. Bernard R. Rubin, Professor of Medicine and Chief of Rheumatology at the University of North Texas Health Science Center, says in his 2000 book Handbook for Fibromyalgia and Chronic Muscle Pain, “Traditionally, Western physicians have divided medicine into two areas. In illnesses, there is either a physical problem—infection, injury—to the body, or a psychological problem. If no evidence of abnormality shows up on lab tests or x-rays, then the problem must be psychological. Therefore, according to traditional medicine, when a person comes to a doctor complaining of fatigue and widespread muscle pain, along with a number of other vague problems, and nothing can be found on the usual tests, the person is obviously suffering from a psychological disorder.”

FM is often dismissed as being psychosomatic—when physical symptoms show as a result of mental ones—hypochondria, imagination, or otherwise not real. This is simply not the case. Mental illness can exist alongside fibromyalgia, but that does not imply a causal relationship. Despite all of the misunderstandings of fibromyalgia outlined above, there is evidence established that fibromyalgia has real physical causes.

1. Fibromyalgia is a disorder of the central nervous system.

   1. Central pain amplification: In its brochure about fibromyalgia, the National Fibromyalgia Association says, “Most researchers agree that [fibromyalgia] is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The [fibromyalgia] patient experiences pain amplification due to abnormal sensory processing in the central nervous system.” (http://fmaware.org/fminfo/brochure.htm)

      1. Substance P: “pain feeling” chemical; higher levels cause a sufferer to feel more pain

      2. HPA Axis: Hypothalamic-Pituitary-Adrenal Axis, has to do with regulation of stress

         1. Adrenal Fatigue: “fight or flight” feeling, overproduction of adrenaline, then the body overcompensates by underproducing it, meaning very low levels of energy

      3. Serotonin has to do with depression but it also acts as a screening agent for pain—higher levels make a better pain filter , so lower levels mean more “bad” signals get through.

   2. Despite knowing this, we are still unsure of the cause of fibromyalgia. A great deal of theories exist. Not nearly enough evidence has been established to conclusively prove any of them.

Conclusion: I hope that in informing you about fibromyalgia’s symptoms, misinterpretations, and biochemistry, you have learned more about the condition today.

In closing… Fibromyalgia has often been called the “invisible disability.” It is invisible, as it causes no physical deformity, so you can’t tell that someone has it until they tell you. It is a disability, as the central amplification of pain can grow so bad as to prevent someone from being able to work—or attend school. To those who don’t know about the condition, a fibromyalgia sufferer just seem lazy or inactive or to complain too much—in fact, they may be pushing themselves beyond their limits; their limits are just lower than yours.

Thank you.

Access is an all-consuming endeavor in a disabled person’s life. I love that the disability community learned to frame it that way: it emphasizes that the problem is not the person, their body or their condition; the problem is society’s indifference.

Many accessibility solutions are structural; they require collective action — constructing spaces such that wheelchairs can be used within them; hiring interpreters and providing caption services… these are not actions that can be undertaken by a single person.

What is unfortunate about this, though, is that it relieves the fully-abled individual of hir responsibility to hir disabled counterparts. It means the fully-abled individual can safely get away with never thinking about disability, and the connection between societal access and hir actions specifically, at all. Sie never has to consider how her attitudes and behaviors very really shape the environment of hir peers. Sie never has to stop and think, how does what I am doing affect those around me, and how can I change that to make things better for them?

When all solutions are collective, your own actions become invisible. Your contribution to the world around you becomes invisible. The power you hold over other people becomes invisible. Your status as part of the problem becomes invisible.

So let’s be clear — YOU ARE PART OF THE PROBLEM. And there is no instant solution, no magic words that can make that “go away.”

But what can you do?

I thought of what I think is an illustrative example the other day.

When I was attending college, I had a lot of walking to do — at least a mile from my dorm to each class, and of course the walking in between. It was exhausting, and it was one of the major factors that led me to drop out the first time.

One of my classes was on the sixth floor of the humanities building. Another was on the fifth floor of the math and science building. And I had several choices on how to reach those points:

1. The elevator.

2. The escalator (in the math building).

3. The stairs.

Here’s the irony: the only accessible solution was the stairs.

I have a physical disability. That disability is also invisible. I can climb stairs, but when I do it precludes any remotely physical activity (up to and including sitting upright) for a couple days, compounded the more flights I have to climb.

This was not teneble, not when I had to do this three times a week, and that doesn’t even include the energy required to walk to the building in the first place, to sit in the hard uncomfortable chair for an hour taking notes, and the energy I needed to do the home assignments, projects, and studying necessary for the class. And that doesn’t account for my four other classes!

So: Why couldn’t I use the elevator?

Well, because everyone else was using the elevator — so many people that there was a long line and usually a 15-20 minute wait before you could step foot in one.

Again, I have an invisible disability. I could have pushed to the front of the crowd every day, jostling my way through dozens of people to weasel my way in the door. And that would have made me kind of an asshole, you know?

So what do I say? “EXCUSE ME, I’M DISABLED, I NEED TO GET IN.” And everybody would turn to look at my lanky eighteen year old body, with no visible deformities, no mobility aids or other assistive devices or personal aide or caretakers, having walked in the front door just fine. And then everybody would be thinking that I was kind of really an asshole.

Complicating things is that at the time, my severe anxiety was undiagnosed and untreated. There was no way I could have even squeaked out a humble “excuse me,” much less forced my way through the crowd, much less shouted for all to hear that they needed to get out of my way and give me “special treatment.” Oooh, how I loathed special treatment. It made me feel like I was, you know. Disabled. Not normal.

Anyway.

This crowd existed in front of every elevator in every building on campus. Not all of the people waiting at that elevator were healthy enough to take the stairs. There were surely others with invisible illnesses like me, and others yet who just weren’t in the greatest shape, and so on. But the majority of those folks took the elevator because it was there. And those folks are the ones who made my life, and my participation in society, that much harder back then.

So: Why couldn’t I use the escalator?

Here’s a different problem. A lot of kids used the escalator. An escalator, as you know, is basically a revolving set of stairs that moves upward, so that you don’t have to do any climbing to get up to the next floor.

But here’s the problem. Everyone who took the escalator? Walked up it.

Everyone.

Now, if I wasn’t going to be climbing the stairs, why the hell would I go and climb the escalator? The entire point is to spare me that climb, right?

But I couldn’t use it that way. If I stood still on a single step, that would clog up the line of kids studiously climbing, climbing. They were narrow enough for two small people to stand side by side, but then not everyone is small, and we also had to carry our bulky book bags and such with us. So if one person stays still, there is a bottleneck effect — only a trickle of people can squeeze through, and everyone else gets stuck behind you standing still.

Assuming everyone in that crowd is healthy, someone who stands like that and creates that kind of jam is, again, kind of an asshole — right? So what was I supposed to say? “I’m disabled, sorry.” While everyone stares at the back of my entirely healthy-looking body for the next few minutes.

Right.

So: what was I left with? Well. The stairs were pretty free. Maybe I could have started to carry a cane, just to visually signal to people that I was sick. Even though I didn’t need that cane and wouldn’t know what to do with it. Do I hunch myself over, tousle my hair and do my best to act like I’m ninety years old and barely hanging on? Just so people would maybe, just maybe, believe me?

Or maybe… maybe everyone else involved could have stopped and thought about how their actions were affecting other people. Because I sure as hell wasn’t the only one facing this dilemma.

Just because the elevators and escalators existed did not mean they were therefore accessible to the people who needed them. Because accessibility is more than structural. It also counts on the actions of each individual.

Yes, you are part of the problem. There are times where you are in the way, where your actions are creating difficulties in someone else’s life. And you probably can’t even see it. But, you know — maybe you would — if you started looking.

Can I call it my alma mater when I only earned 15 units (over two long years) and never graduated?

I picked it blind, sort of; I was looking at art programs and affordability, and not much besides that.

But they won the 2004 College World Series, which was exciting. They focus on their baseball (which has long been my favorite sport) and don’t have a football team (which, while I like the sport somewhat, I can’t stand the culture surrounding it, so I was very, very glad they didn’t end up having that).

And unbeknownst to me, they were developing a fibromyalgia center at the Kinesiology Department, with the participation of none other than Dr. Stuart Silverman, my mother’s rheumatologist and my old rheumatologist’s office partner, one of the most world-renowned doctors for the treatment of fibromyalgia, and who watched me grow up from half a decade old and up.

Which brings me to today’s news:

FULLERTON — The newly opened Fibromyalgia Research and Education Center at Cal State Fullerton has received a $298,102 grant from Unihealth Foundation.

The funding will be spread over two years to provide support for the FAME Project, an acronym for Fibromyalgia Assessment, Management and Education.

The project will focus on developing and implementing a Web-based training program for health care providers on the diagnosis and management of fibromyalgia and overlapping conditions. Also, the grant will be used to increase the number of trained health care providers to treat and care for FM patients and improve delivery of care to those people.

Coincidentally, during my second year at CSUF I lived not two blocks away from the National Fibromyalgia Association’s then-office on Glassell Street in Orange, California. I always intended to walk down there—what for, I don’t know; to introduce myself? look at it, turn around and walk back home?—but never did.

Heads up for Cal State Fullerton. I’ve always been proud to have attended, and I miss it very much.