A fatigue beyond the reach of willpower
That’s how the author describes her devastating illness. Despite all the pain, though, she says it taught her many lessons.
The heartache began on March 25, 1985. I was 32 years old.
There was little warning. I’d had a bout of flu a month before and one minor episode of heart palpitations shortly after that. It was nothing, I thought. Indeed, my flu had not been nearly as severe as that of my husband and 2-year-old son.
I went back to my usual schedule, working 80-hour weeks in my group practice, a load that seemed light compared with the hundred-hour weeks I’d put in during my medical training. I was used to pushing through fatigue, even pain, to meet the demands of my schedule.
Dr. Lida Osbern
But when the pain struck my chest that Sunday evening, even I must have known this was ominous. Still, I insisted to myself that it was indigestion. And when antacids didn’t help, I remarked to my husband that perhaps my chest muscles were sore. He suggested horse liniment; we tried it, but that didn’t help either.
I slept poorly that night because of the pain, and the next morning it was so severe that my husband had to lift me out of bed. Having learned denial in medical school, I willed myself into the shower and to work. Only halfway through the day, when the pain began to radiate into both elbows, did I take my stethoscope into the bathroom and listen to my chest.
What I heard was a pericardial friction rub, and quite a loud one. Still, only after evening rounds at the hospital did I consult my own doctor.
That was the last full day I worked for more than a year.
My doctor persuaded me to rest, but I got sicker instead of stronger. My days became a nightmare, with one episode of chest pain after another, unending muscle aches, and indescribable weariness. I had to be carried from the bed to the sofa. I couldn’t hold a paperback book – too heavy. Lifting my 35-pound son was unthinkable. The day I lacked the energy to put on my socks, I cried.
After three weeks, my doctor sent me to a cardiologist, but he could do little. Myopericarditis offers few options for treatment; if the condition is going to clear up, it does so on its own, with time, with rest. Many months later, the cardiologist confided to me that I was so sick that he’d thought I would never return to work.
As my illness continued, my first cardiologist eventually referred me to another at the University of Kansas Medical Center. But the new specialist, too, was powerless. After fruitless efforts to help me, he phoned yet another cardiologist, “Dr. Pericarditis,” a man noted for his knowledge of the disease. How long, the university cardiologist asked, could my illness be expected to last?
Dr. Pericarditis replied that he had treated one woman with nearly continuous problems for 24 years.
Oddly enough, I was not so much discouraged as relieved, even elated, to know that my case was not unique. I was beginning to fear that I was imagining my symptoms – or worse, that my physicians might think I was.
Once, during my pulmonary fellowship program, I had worked almost continuously for four days and three nights. But going sleepless was nothing compared to the weariness I felt during my illness.
Besides myopericarditis, I had bone marrow suppression, pleuritis, hepatitis, and myositis. A second pregnancy was out of the question at that point. My fatigue was beyond the reach of willpower. I slept up to 17 hours a day. I had lost so much weight and muscle mass that I looked like a child’s drawing of a stick figure. I was depressed.
Eventually, I was referred to an immunologist, who agreed with my doctors that my problem had begun with an infection of Coxsackie virus, followed by autoimmune inflammation – “molecular mimicry,” in which the body mistakes its own tissues for viral particles. With my multisystem disease, there could be little treatment other than rest, ibuprofen, and “tincture of time.” Slowly, very slowly, I grew better.
Thirteen months after my ordeal began, I was back in the office, if only for a few hours a day. I was amazed at the energy it took to dress, travel to work, and sit quietly in a chair listening to patients. Over three years, I gradually increased my hours.
My story has a happy ending. I haven’t needed a heart transplant. I have no residual evidence of the illness other than a calcified posterior pericardium. I can ski and swim and ride horseback without limitations.
I now work a full week – although I see to it that a full week is no longer 80 hours, and I now make time in the morning to go to the gym or have coffee with my husband.
And I have learned much from my illness:
- I am not indispensable. My partners took excellent care of my patients.
- My patients care about me as much as I care about them. Even now, 11 years after my return to work, they ask after my health.
- If I take care of myself, I take better care of my patients.
- There’s nothing worse for a patient than to wonder if one is imagining one’s own symptoms, or to worry that one’s own doctors might think so.
- Children blame themselves for whatever happens in their world. I learned only recently that my son thought that my illness was somehow related to his birth.
- Something good, and sometimes surprising, comes from every trouble. When I was ill, I could do almost nothing for my son but read to him, and even then he had to hold the book himself. But by age 10 he became a published author – with a poem about love!
- Don’t put off that dream vacation with your family. Live for today; don’t postpone happiness.
This article first appeared in Medical Economics on March 10, 1997.
In 1990, I had been advised against getting any vaccines with the concern that the flu shot might have “stirred up” my myopericarditis on a couple of occasions. However, my concern about COVID-19 prompted me to get the Moderna COVID vaccine, and I practically cried with joy to feel safer. The data was not available when I made my decision in January, but we now know that myocarditis/pericarditis is 6 times more likely with the COVID disease than with the COVID vaccines. There is NO illness that would do better with the disease than with the vaccine. Please get vaccinated.
About the author
Dr. Lida Osbern is an internal, pulmonary and sleep medicine physician with Reed Internal Medicine.