Alexis: Alone No Longer

I have been searching for an explanation for my symptoms nominally since 1991 and in earnest since 1995, when the pain made living in my own body a hellish experience. For years, I heard doctors tell me that "everything is normal" and they "couldn't explain" why I was exhausted, confused, depressed, and in constant pain.

And with no explanation, no one was interested in treating me. Why should they? I was an apparently healthy, albeit apparently depressed, teenage girl complaining of vague and variable pain, constant nausea, confusion, exhaustion, and depression. My primary care physician, convinced I would "grow out of it," never bothered to refer me to anyone, or to prescribe anything other than Valium - which did nothing.

Meanwhile, my peers and teachers were no more useful. From fourth grade through undergrad, I heard almost daily that I was "too sensitive," that I "needed to slow down and relax," that I was a "crybaby," that I was "making it up," and that I was "faking it" to "avoid responsibility." Never mind my near-perfect GPA or my laundry list of accomplishments and honors - I was a "shirker."

The pain was, and is, real. Yet, by the end of high school, everyone who was not living with my pain had convinced me I was just a whiny crybaby. I couldn't, as a recent New York Times article put it, handle "aches that other people simply tolerate." I actually believed other people did "simply tolerate" the kind of pain I lived in; in fact, I even believed the horrible pain caused some people's shocking rudeness. (Imagine my surprise when I discovered many rude people are in no physical pain at all - they're just rude.)

By 2000, I had learned two things: that I was in crippling pain, and that it was somehow my fault. Throughout college I blamed myself for every class I missed, every party I couldn't attend, every meeting I had to skip - so I could sleep, or eat, or curl up on the bathroom floor and cry. Still my doctor did nothing. I graduated summa cum laude, holding the university record for most earned undergraduate credits, and all I could think about was everything I had NOT done because my body stopped me.

It only took one semester of law school before I had had enough. By this time - it was 2005 - I had diagnoses of chronic myofascial pain syndrome, cervicalgia, chronic daily headache, migraine, primary dysmenorrhea, reactive hypoglycemia, irritable bowel syndrome, and TMJ disorder - and I suspected hypothyroidism and MCS. All of these things followed the same pattern. They got worse together; they got better together. I assumed the constant battering from the known disorders caused the constant body aching, the disturbed sleep patterns, the cognitive disabilities, the inability to handle even moderate levels of sensory stimulation, and the chronic nausea. I had no idea those symptoms, too, had a name.

Despite having a new doctor who actually knew how to listen, it took me two more years to shake the ridiculous notions that I was merely "too sensitive" and that the pain was somehow my fault. Perhaps the single biggest help was when my primary care doctor referred me to an anesthesiologist and then a neurologist and a physical therapist, all of whom had the same attitude: "your pain is real and there is something we can do about it." No one - literally NO ONE - had ever told me that before. Some days, I still think it's nothing but a pipe dream.

Having a name for the common link between all my symptoms, that plague I have always known exists and yet have always blamed myself for, has changed my life. The pain is no longer my fault. It's not something to ignore or fight, but to trust and treat. My "perfectionism" and "ambition" are no longer failings, but assets. I am no longer crazy. And I am no longer alone.

Tom: Taking Pain Seriously

I was first diagnosed when I was sixteen, but the symptoms had been around in some form or another since I was eight. That was when my family uprooted and moved city. Moving is hard for everyone but I took it harder than most. My life changed in what seemed like overnight, I used to be able to do everything but suddenly I was chronically lethargic and I put on a lot of weight.

When I was around ten, I had my first experience with pain. I woke up one morning and I simply couldn't walk, my knees were in agony whenever I tried to move. As everyone who has fibro has experienced, the doctors couldn't find anything wrong and my blood was perfect. I felt so guilty, like I was nothing but a drain on everyone and they might not even believe me, something I still struggle with. It persisted for several weeks then as instantly as it came it left. Since then I get those same bursts of pain and there's no rhyme or reason in the duration between attacks, the duration of them or where in my body it will manifest.

I ended up going to a private high school known for producing top athletes where being obese earned me merciless bullying, and instead of making me fitter the rigorous PE schedule destroyed my body. After my parents divorced and I was living with mum, we'd argue every morning about how sick I felt, she never believed me and I got regular beatings, and to top it off she lied and told anyone with authority that I beat her, and as she said, no one did believe the male in any case of domestic violence, even though I was still a child. The more anguish in my life, the sicker my body got.

In the last year of school I completed, I made a friend online who lived in a different state and happened to suffer from fibromyalgia, and as we got to know each other, we both knew that was exactly what I had. I'd hate to think what life would be like now if I still didn't know what was wrong with me, I owe so much to her. At the end of that year I lived with her for a while so I could get diagnosed by her doctor. Thankfully when I came home I moved in with dad who is very supportive and understanding.

One of the biggest challenges is just trying to be taken seriously. I think in society, chronic illness is either seen as terminal or one that can be controlled by popping a pill every day, anyone who doesn't fit into one or the other is a hypochondriac or a liar. Being obese too, like many people who have little energy to use on non essential things like exercise, I've known people who think that I'm only disabled because I'm fat. "All fat people have no energy but they still go to work and get on with life" and "It's your own fault for being a glutton in the first place" are two things I've heard enough for one lifetime. Many of the same people who support and even donate to "sexy" illnesses like leukemia, spinal cord injuries etc. will expect the rest of us to pull ourselves up by our own bootstraps when we have cinder blocks tied to our arms. I still only know a handful of people who believe I'm sick.

The other challenges are the lethargy and depression. The pain I can usually handle, but as a young person, trying to find my place in the world with no qualifications and high demands is impossible. It's very hard when I see other people who got fibro in their late twenties or thirties, after they had gone to college and got experience working so that at least they might be able to get a good part time job. For me the only job I could get is manual labour which would be disastrous for my body. I never graduated from high school so no university will accept me. I've tried a few times to do other kinds of courses but I've always run out of steam too early to complete them so far. If it was because I was stupid I'd be okay with it, but I know I'm smart and it's only because of my fibro and bad childhood that I did so poorly, it's a very bitter feeling.

It's taken a long time to find things that help, but without a good psychologist who practices EMDR I wouldn't even have the courage to leave the house, and a few months ago I was given a ray of hope in the form of Zyban. It's not perfect or even completely adequate for my needs, but it's given me enough energy that I feel like I'm actually alive rather than floating in a cloudy half-awake-half-asleep meaningless existence. I don't want to get my hopes up but I do feel like things might work out okay in the end.

We live in a world that's evolved into a hyper quick fix globalised society where we're also expected to not only keep up with the Joneses, we have to decimate them, and it's been quite a painful but eventually rewarding learning experience discovering that life isn't a race. I can only do the best with the tools I was given, and I feel like I'm doing that now.

Rio: We're All a Little Different

One of the most challenging things about my fibromyalgia is my response to a variety of drugs. Everyone has little physiological differences, and fibro sufferers even more so, but I have a particularly odd system, which has made treatment of my symptoms quite challenging. Doubly frustrating is the barrage of "advice" I get from people who have had this or that drug work for them, especially when they get upset at me for not being the same as they are.

The first awareness of my abnormal drug reactions came after I received a pain medicine prescription, probably for one of my surgeries. Lortab, which is hydrocodone with acetominophen, did not make me drowsy--it did the opposite. It sped me up, made me wide awake and hyper. This was before I developed FMS, so it made me absolutely manic. These days, it just brings me up to "normal". It is also very effective for my pain, which I'm told is not usually the case for FMS pain.

I've had allergies for a number of years. I took Claritin for a while, then switched off with Zyrtec when the Claritin wasn't working. I'd heard about Benadryl making people drowsy, so I avoided it. Eventually, though, I was broke, and I needed something that would actually work for my symptoms. I took some Benadryl, and found that, while it treats my allergy symptoms, it does not affect my wakefulness at all. Many people tell me that they are knocked out by half a tablet. I can take two,
with zero drowsiness. Fortunately, it does not speed me up like hydrocodone does!

My previous doctor had me try muscle relaxers to help manage some of my fibro symptoms, and to help me get better sleep. After taking them religiously according to the directions, I finally went in to the doctor's office and asked him what exactly they were supposed to DO. He asked me what I meant. I told him that I take them, but my muscles don't loosen up, and I don't get at all tired. He tried me on a different one, with the same results. We gave up that tactic entirely. I still don't know what you're supposed to feel after taking one of them, but everyone tells me that they fall deeply asleep.

Another supposed miracle drug for FMS sufferers is Ultracet. That's another one I took religiously, with no effect whatsoever. Again I asked what exactly it was supposed to do, and my doctor concluded that it just didn't work for me. It's one that I really wish people would stop telling me to try. I've tried it. It doesn't work for me. Being angry at me for this isn't going to make it work for me. I'm glad that
it does help other people, but I'm not so lucky.

FMS sufferers get a great deal of unsolicited advice. I'm glad that other people care about our well-being, but please remember that what works for one person does not work for everyone. I know that some people are helped by yoga, while I know others for whom yoga would make symptoms worse. It's part of the frustration we face with our doctors, with each patient needing individualized management plans. Believe me, we really do want to get better, or to try to live as normally as possible--it's just that finding the best plan for us may take years of trial and error before we come up with one, if we ever do.

What we need from those around us is patience and kindness. We're sick of being sick, and rather than suggesting what drugs to take, could you maybe talk to us about another subject, say, the weather, or what books you've read lately? We're people, too, with interests outside our illness, and it would be nice if we could focus on something else for a change!

Rio also blogs at She Dances on the Sand.

Meet Your Mods: Annaham

Hello.

I saw the noted film director John Cameron Mitchell speak on my college campus a few nights ago, and he told an interesting anecdote about being a "sextra" in his most recent film, the sex comedy Shortbus. He went through the process of being an extra--except, in the case of the film (which features explicit sex, and is, to that end, unrated), he had to have sex, on camera, just like his actors did--in order to "demystify" his status as a film director. He concluded with a particularly salient point: it is important, when undergoing a creative project that involves working with other people, to remind them that you are all in a similar situation.

So, to demonstrate the importance of this point, I will now tell the story of my own experience with fibromyalgia. This is not to say that all of our experiences are the same. We could be, however, in similar situations.

I've been a Type A personality for as long as I can remember. Everyone knows someone who is like this: they're usually motivated to a degree that can sometimes cost them their sanity; they tend to take criticism very personally; they tend to obsess over situations both large and small. In my case, my desire to do well at everything stemmed from personal insecurities surrounding my mild cerebral palsy that I'd had since birth. Many of these insecurities sprouted like particularly annoying weeds, and would continue to grow through the years. Though I was plagued by serious depression during my teenage years (starting somewhere around the time when I hit puberty), I nonetheless continued to push myself to be "great" at everything--especially at academic pursuits.

It wasn't until my second year in college that a few mysterious symptoms descended upon me, somewhat like unexpected houseguests that you barely know (maybe through a friend of a friend of a friend), and they call you out of the blue to say, "We're in town! Can we stay at your place for a while?" They'll leave eventually, you figure. You'd be rude to not let them stay--and you don't want people thinking that you're rude, do you?

I woke up one day feeling unusually tired, with bizarre, unexplainable joint pain to go along with it. The next day, I felt worse—-this time, I had muscular pain and weakness to go along with the tiredness and joint pain. I figured that I was having a bad week, and that it would resolve itself within a few more days. The cycle of strange symptoms continued for more than eight months as I visited doctor after doctor attempting to find out what was wrong and why I was feeling like roadkill. Finding out what was wrong became something of a part-time job, and it was not until a full ten months later that I found a doctor who did not simply tell me that my
symptoms were psychosomatic.

Now, this once-mysterious group of symptoms has a name—-Fibromyalgia. It is a difficult disease in all aspects—-difficult to pronounce verbally, difficult to explain, difficult to diagnose. The symptoms can vary from patient to patient, which is partially why it is so hard to diagnose, and later, to treat.

Out of all of my symptoms that are regularly or semi-regularly occurring—-among
them nausea, irritability, mild to severe muscle and joint pain, and difficulty maintaining focus for long periods of time—the most affecting has been the persistent fatigue. I constantly have the urge to lie down and go to sleep; I know that if I could get away with it, I would probably prefer to indulge these urges and take long naps at least once per day.

Whenever my to-do list for any given day pops up at me like a sinister Jack-in-a-Box, I am immediately tempted to give in to such a base urge and sleep my way into (hopeful) restoration. The way some people are driven by simple human instincts such as sex or nourishment, I am driven by the promise of eventual, ultimately restful sleep. The catch, of course, is that this restoration never works—-I am always exhausted, even after a full eight hours. Yet, I keep pursuing this rather mythical notion of “the perfect sleep,” hoping that all of my efforts to manage my condition will one day be rewarded with such a prize. In some aspects, then, I subscribe to the cultural “myth of control” that the feminist theorist Susan Wendell, who has Chronic Fatigue Syndrome, so aptly describes:

When people are blamed or made to feel responsible for having nonideal bodies despite their reasonable care, when unproveable theories are generated to explain how someone could have avoided becoming ill, when people with disabilities are seen as having their psychological, moral or spiritual failures written upon their bodies, and when every death is regarded as a defeat of human efforts, the myth of control is at work. (94)

It frustrates me deeply that I subscribe to this mode of thinking, and our culture's pathological love affair with the pull-yourself-up-by-your-bootstraps rhetoric certainly doesn't help. I can acknowledge that I do, indeed, accomplish quite a bit: I go to school full time at one of the top public universities in the U.S.; am on the Dean's List of said university; have a job that I enjoy; maintain another blog; and take care of a small, annoying, and very loving dog (Winston, pictured above). However, the peculiarly American obsession with control of every aspect of one's life still haunts me. It's in the disbelieving looks and comments that some people feel so entitled to express when I tell them about my condition. It's in The Secret. It's in our mainstream media's bias against people with chronic health conditions that don't quite have those markers of disability that we've all come to rely on. It's even in out advertisements (Nike's "Just Do It" comes to mind). The message is that if you can't control your body, you have somehow failed.

I believe that this can change, and that it is up to us to change it.

Annaham also runs HAM.BLOG.

Intro Post!

Hello, and welcome to Faces of Fibro. This blog was created to, in part, combat the backlash from recent U.S. print media articles that question the very existence of this condition. I hope to create an archive of the stories, images and experiences of people with fibromyalgia.

Here are some very general submission guidelines:

I want to hear about your experiences with this illness, in 500-900 words. Here are some sample topics to get you thinking (and writing):

--How/when were you first diagnosed?
--What has been the biggest challenge so far in dealing with your condition?
--What have your experiences with telling other people that you have this condition been like?
--Do you believe that there is a stereotype of people with chronic health conditions? If so, how do you personally fit or not fit this stereotype?

These are just sample topics. You can write about any aspect of fibro and your experiences with it, really.

Please email your submissions to annaham AT gmail dot com. You may submit under a pseudonym, but use an actual name, please. Pending approval, I will have your submissions up on the blog in as timely a manner as possible. If you want to include a picture of yourself, it is welcome and encouraged. (Max of 350 X 500 pixels, please.) If you have a website or blog that you would like to be linked after your piece, or biographical details that you would like to include at the bottom of your piece, please send either of those with your submission as well.

I look forward to reading your responses!