I Diagnosed Myself
Life was looking up in October 2010. I had lost more than 40 pounds in the past year and was going to the gym three or four times a week. At age 30 I felt in better shape than ever before. I'd just been promoted at the Detroit-area public library where I worked and had applied to grad school for library science.
When I got a nagging cold and started to feel tired, I thought maybe my 90-minute gym sessions were too much. But easing up on workouts didn't help. In fact, over the next several weeks I felt so fatigued it was hard to do the simplest things. Walking felt like slogging through waist-deep water. Just climbing the stairs to my parents' house (where I lived to help care for them) left me drained.
At first I didn't want to believe anything could be wrong. But arriving exhausted at my desk one day, I faced reality: That morning I'd needed my mom's help to get my shirt over my head and was forced to lift my weak legs into the car with my hands. I called my doctor and made an appointment.
But first I wanted information. Like any aspiring librarian, I tried to research thoroughly, making a complete list of my symptoms and plugging them into reputable sites. A lot of possibilities came up: lupus, rheumatoid arthritis, Lou Gehrig's disease. Then I came across information on myositis, a rare autoimmune disease that progressively weakens muscles. Some forms of it clearly didn't fit me -- like the ones that strike older people or children. But one form did: polymyositis. It tends to affect young women and progresses with symptoms that sounded like mine.
When I saw an internist a week later, she asked me about any family history of autoimmune disease and ordered tests. Maybe I should have spoken up about my suspicion of polymyositis, but I didn't want to tell her how to do her job. But when the tests came back, my self-diagnosis seemed on target.
Blood work found levels of a muscle enzyme six times higher than normal -- a sign of polymyositis. My primary care doctor said such critically high levels could shut down my kidneys, so he sent me to the ER for an emergency IV to flush the enzyme from my blood. I wound up in the hospital for 12 days. More tests confirmed what I feared: I had polymyositis.
For three months I was treated with high-dose steroids, two drugs to suppress the immune system, and IV infusions. Nothing helped and my arms, legs, and shoulders got even weaker. Doctors had told me to expect this, but I became angry and depressed that I'd gone from being this poster child for good health to a person who couldn't get around without a walker or wheelchair.
Thinking about my mother, a 10-year cancer survivor, and my nieces and nephews helped give me strength. I also found some help on Facebook. I know -- not exactly a source you'd recommend for a kid's term paper let alone researching your own potentially life-altering disease. Yet online support groups for polymyositis gave me insight into everything from test results to medication. And when I was at my lowest point, thinking of my Facebook community helped bring me back from the edge. "If those brave people can wake up every morning and face their disease head-on, so can I," I thought.
My diagnosis was just the start of a long, tough journey. My online community has become a support system and a real source of essential information. For example, I learned from some of my nearly 50 myositis friends on Facebook that my test results may indicate a higher risk of having other autoimmune diseases.
Today I feel I've rebuilt about 90 percent of the strength and fitness I had two years ago. I can lift laundry and walk up stairs, and I'm back at work and studying for my master's. Some days I'm achy and sore, but that comes with the disease, and it's what I'm used to now. I've learned I have to believe things are getting better -- and they are.The Facts: Polymyositis
What it is: A disease in which the immune system attacks healthy muscles, making them progressively weaker. Though most common in women in their 30s, 40s, and 50s, the disease is rare, affecting only two to 10 people per million.
Symptoms: Weak muscles, especially in the hips, thighs, and shoulders, along with fatigue, tender joints, and difficulty swallowing. Symptoms vary and can come on slowly, so polymyositis can be hard to diagnose.
Treatment: Corticosteroids or other drugs to suppress the immune system. Doctors may also use therapies such as intravenous immunoglobulin to supply the body with healthy antibodies.
Info: The Myositis Association, myositis.org