In Their Words
The Invisible Illness
Fibromyalgia, the little-known disorder that leaves its sufferers begging to be understood.
By Donna Gregory Burch
It’s midafternoon, and I’m struggling to finish a 500-word story for a college alumni publication.
My head feels like a bag of cotton balls, making it hard to pull the right words from my foggy brain and then string them together in a way that makes sense. All I want to do is climb into bed for a nap. I’m tired – exhausted is really a better word choice. It’s the kind of exhaustion that doesn’t go away with a good night’s sleep or a weeklong vacation. No matter how much I sleep, I still wake up tired, every day.
As I sit, my legs throb like a toothache. My hands always feel swollen and stiff. Occasionally, sharp, shooting pains flow through random parts of my body – my eardrum, neck, the back of my thigh – places that ordinarily go unnoticed in the human body. They seemingly come from nowhere, taking away my breath and sometimes prompting me to interrupt the quiet with a loud “ouch!”
I’ve worked from home for 12 years. I never knew how much of a blessing that was until I was diagnosed with fibromyalgia last spring. Fibro is a little understood syndrome that’s characterized by widespread musculoskeletal pain, extreme fatigue, sleep disturbances and memory and cognitive issues (also known as “fibro fog”). Researchers aren’t sure what causes fibro, but speculate that fibro pain occurs because the brain incorrectly processes the body’s pain signals.
Fibro affects more women than men. (Hollywood actor Morgan Freeman is probably the most well-known male with fibro.)
Health agencies estimate that 5 million Americans have fibro – that’s more than three times the number of people who have rheumatoid arthritis.
Yet many people have never heard of fibro, and some health care providers don’t even recognize it as a legitimate medical condition because there is no accepted laboratory test to diagnose it. Fibro is often a diagnosis of exclusion, meaning physicians diagnose fibro after they have ruled out other conditions with similar symptoms.
There is no cure for fibro. It is a chronic condition, which has to be “managed,” as physicians like to say.
Fibro patients vary in their level of day-to-day functioning. Some are virtually bedridden all day. Others are able to hold down full-time jobs and raise families. But more often than not, based on others I’ve spoken with, many fibro sufferers are in the middle of those two extremes. It’s pretty common for people with fibro to hold some sort of part-time job – often they work from home – that allows them some flexibility in their schedules.
I am one of those people. I work as many hours as I can each week from home, but it’s been quite a while since I’ve been able to work a full-time, 40-hour week.
My husband would love for me to get a cushy, well-paid government job, instead of continuing to slog away for little money as a freelance writer.
But the truth is, I couldn’t work one of those full-time office jobs even if I wanted to. He’s at work during the day, so he doesn’t see the afternoons when I just can’t sit at my desk another minute because of the pain and the brain fog, and I have to go to bed for a couple of hours. To him, I look perfectly healthy.
And that’s one of the hardest things to explain to someone who doesn’t have fibro. It’s an invisible illness. Most people with fibro look completely normal on the outside, but our insides are continually flaring with chronic pain and fatigue.
Like so many of my fellow fibro sufferers, I’m a good soldier. I push myself to do the things that have to be done. Most nights I’m able to cook dinner, and my house is probably cleaner than most. I don’t want fibro to take things from me that I love, like good food and soft, bleached white sheets.
But I have to admit that sometimes the pain is so bad that I end the day crying while taking a hot shower. (Hot showers are one of the few things that help manage the pain.)
Depression is very common among people with fibro, and with good reason. It’s hard to feel hopeful about the future when you feel like crap every day.
I can’t remember a day when I didn’t feel some kind of pain. I know it’s been years. Fibro introduces its sufferers to all sorts of pain – shooting, stabbing, burning, stinging, throbbing. But mostly, my body just aches, like I have a flu that never goes away. Some days, it feels like I’ve forced myself to run a marathon after sitting on the sofa for 20 years.
Like so many other sufferers of fibro, it took several years for me to be diagnosed. (Studies show it usually takes five years on average for fibromyalgia to be diagnosed.) I lost count of the number of physicians that I saw, trying to find out what was wrong with me. When I’d complain about being tired and achy all over, they’d either tell me to get more sleep or try to write me a prescription for an antidepressant.
I insisted I wasn’t depressed and walked out of so many doctors’ offices feeling like I hadn’t been heard. A few months would pass, I’d get fed up with the symptoms and I’d try to find an answer again.
At one point, I was misdiagnosed with a thyroid condition. I was given medication and was hopeful it would alleviate my fatigue, brain fog and chronic pain. It did nothing.
Finally, an orthopedic physician referred me to a rheumatologist. After going through yet another round of blood tests, ruling out other conditions like lupus and rheumatoid arthritis, my rheumatologist added a diagnosis to my medical record: fibromyalgia.
I was ecstatic. I finally had a name for what was causing me to feel like I was slogging through deep sand every day. I finally had a name to give to family and friends who had insinuated my symptoms were all in my head or had said that I should just get used to the pain because “that’s what happens when you get older.”
I naively thought that if I just took the right medication, then my health problems would be solved. I had somehow internalized all of those Lyrica commercials that send the unspoken message, “Take our expensive medication, and you’ll be able to work in the garden and take your kids to the county fair, too, just like the actresses in our commercials.”
But that’s not what happened. Over the past 12 months, I’ve tried five medications (including Lyrica). All of them caused bad side effects and, in some cases, actually made me feel worse than I did before taking them. I’m 25 pounds heavier, thanks to the medications my doctor prescribed for improved sleep, and I still don’t sleep well.
But I can’t fault my doctor. He’s done the best he can with an illness that is still a great mystery. Truth is, there’s little out there that’s been proven to help fibromyalgia. The three drugs approved by the U.S. Food and Drug Administration to treat fibromyalgia only work in about one-third of patients. There is no magic pill.
But I’m still hopeful. Now that the economy is improving, fibromyalgia research is increasing. There are a few promising studies underway – studies that I hope will tell us more about how fibromyalgia works and eventually lead to better treatments.
In the meantime, like other fibro sufferers out there, I just want understanding. There are so many misperceptions about fibromyalgia.
|Donna Gregory Burch, former news editor of the Chesterfield Observer, is a freelance writer who lives in the Philadelphia area.|
No, I’m not a hypochondriac, and my symptoms are not all in my head. I’m not lazy, and I’m not trying to get out of working.
When I’m talking and I can’t think of the right word to say, that doesn’t mean I’m dumb. It means I’m experiencing fibro fog.
When I make plans to do something and then I cancel at the last minute, it doesn’t mean I’m unreliable. It just means fibro’s symptoms are unpredictable.
When I say I’m tired, I mean that I’m the “Walking Dead” kind of tired. I appreciate advice, but going to bed earlier or taking a vacation to the beach isn’t going to cure my fatigue.
And, yes, I know exercising would help, but there are some days when fibro sufferers can barely walk around their houses, much less around the block or on a treadmill.
I’m not seeking sympathy, and I don’t want anyone to feel sorry for me. At the end of the day, most fibro sufferers just want the same things: not to be labeled as crazy or lazy and for our condition to be acknowledged as real. That’s all.