"I think the thing that amazed me the most was that when I tried to explain my condition — a condition that left me hurting all over, literally from head to toe — doctors often looked at me as if I was making it all up. Sometimes, when I felt really down, I thought maybe they were right."
But they were wrong.
And it took Alan Epstein, M.D., clinical associate professor of medicine at the University of Pennsylvania School of Medicine and a member of the division of rheumatology at Pennsylvania Hospital, to make Emma right again.
Finally, after Emma's years of suffering and not being believed, Epstein discovered that she was suffering from fibromyalgia — a real disease characterized by muscle and joint pain, flu-like discomforts that can be severe and constant, a feeling of exhaustion, specific tender points, body aches and muscle stiffness.
"It can also be accompanied by irritable bowel syndrome, sleep disturbance, headaches, anxiety, depression and a variety of other symptoms," explains Epstein.
And just like Emma, he notes, "many patients suffer with these symptoms for years before getting help."
Interestingly, it's estimated that some 10 million Americans suffer from the disorder, and, to build awareness, May has been designated as National Fibromyalgia Education and Awareness Month, much to the delight of Emma and others like her.
She says through tears in her eyes: "What amazed me the most is that many doctors weren't familiar with fibromyalgia, even though I would come to them with pages and pages of information I had discovered on the Internet. But most of them weren't interested.
"After all, who was I? I wasn't a doctor. So the most they could do was prescribe something for pain without really trying to discover what was causing my pain."
But Epstein did care. He even knew about fibromyalgia, so after ruling out other possibilities for Emma's dilemma, he began to zero in on the problem.
Difficult to Detect
"Fibromyalgia is difficult to diagnose. There is no test for it," he states. "So this diagnosis is based upon a patient's history, physical examinations, then perhaps lab work and X-rays to exclude other possibilities."
(Indeed, in researching this story, a number of physicians contacted were hesitant or turned down requests to discuss the disease.)
Emma landed in the hospital when her pain got bad enough.
"Initially, with the symptoms she was having, we looked into the possibility of her having lupus, or rheumatoid arthritis, even Crohn's disease. We even had to look at things like problems with the thyroid and so on. Unfortunately, fibromyalgia can mimic other diseases so we have to start by ruling out other things."
Additionally, Epstein continues, "patients say they hurt all over, so widespread pain is a clue. There are very few things we see in medicine where people say they hurt all over. They also give you a history of sleeping poorly and awakening unrefreshed, once referred to as nonrestorative sleep. And more."
And although the cause is still not known — and fibromyalgia can affect anyone at any age — it predominately affects young and middle-aged women more than men.
"Fibromyalgia was first clinically appreciated in early to mid-'80s," says Epstein. "That's not to say it was new then, like Lyme disease or HIV, which were 'new' diseases. It was just newly appreciated in the early '80s."
And today, the best way to handle it, especially with so many doctors still not familiar with it and oftentimes writing it off (as well as the people suffering from it), the medical establishment must be educated.
"I think education goes a long, long way," says the doctor. "If people understand that this is a real illness and not something going on in a patient's head, it would go a long way to helping people live better lives.
"The fact that we don't understand something doesn't mean it's any less real. That's why I believe education is an important component in helping our patients.
"We cannot cure fibromyalgia, but we can make people more comfortable and more functional, and perhaps [provide] the best way to find a doctor who understands the disease," says the physician, adding that the Arthritis Foundation (www.arthritis.org) is "a good place to start."