Feeling Her Pain
She Doesn't Look Disabled. Some Doctors Believe Her Condition Isn't Real. But for the Author, Fibromyalgia Makes Every Day a Struggle.

By January W. Payne
Special to The Washington Post
Tuesday, November 11, 2003; Page HE01

The doctor pressed his thumbs into my skin, first on the back of my neck, then my arms, my back and my legs. It was my first visit with him, but he managed to find painful spots I didn't know existed. He looked serious and focused on his hands. How long had I been in pain, he asked. Where did it hurt the most? Was I tired all the time?

This was my diagnostic exam for fibromyalgia, a controversial, often debilitating condition of chronic muscle pain and fatigue first recognized by the American College of Rheumatology in 1990. The group's diagnostic criteria for the ailment include a history of widespread pain lasting longer than three months and pain in at least 11 of 18 "tender points." Doctors press each point for about four seconds while asking if the pressure causes pain.

I "passed" the exam. I had fibromyalgia. I was 17 years old.

I had spent the previous year and a half feeling exhausted and hurting all over after a November 1996 car accident. I had bounced from specialist to physical therapist and back to my family doctor several times, only to be told that all of my blood tests and X-rays were normal. My pain had no identifiable medical cause.

But there it is, on mornings when I can't turn my head sideways because of a shooting pain across the back of my neck, or on days when it's hard to walk because of the throbbing in my right knee, or the many times the dragging fatigue kicks in after even mild physical exertion. Some days the weight of my head on my neck is terribly painful.

There are two types of fibromyalgia: post-traumatic and primary. Mine is post-traumatic, the type usually caused by a serious injury or severe illness. The primary type is assumed to be inherited and lifelong. And I learned, as do many of the estimated 3 million to 6 million fibromyalgia patients nationwide, that getting a diagnosis is the key to getting successful treatment. There is no cure.

Fibromyalgia is a syndrome identified only by a set of symptoms. There is no blood test to identify it, no body scan that can "see" it, no way to identify it beyond the patient's reported pain and medical history.

To treat it effectively, said my rheumatologist, Russell Rothenberg, a George Washington University Medical School professor and clinician, the pain, fatigue and other symptoms must be treated at the same time. For me, that means a three-times-daily painkiller called Ultracet, a muscle relaxer called Flexeril to help me sleep at night and light aerobic exercise three times a week.

But some doctors wonder if the condition really exists.

"I don't feel it's a unique condition," said George Ehrlich, a University of Pennsylvania Medical School professor. Most people experience chronic pain at some point in their lives, he said, and many require treatment, but that does not warrant a special diagnostic category. "I obviously appreciate that the people who complain have the pain that they complain of. . . . But it's part of the spectrum of chronic pain. It's unfair to make it a separate condition when it really isn't."

Such opinions are not unique. Fibromyalgia patients who can't work full-time often struggle to qualify for Social Security disability benefits. Some cannot get insurers to cover treatment. Ehrlich is critical of doctors and lawyers who make their livings fighting for disability benefits for fibromyalgia patients. "It's become a big industry for trial lawyers," he said.

Fibromyalgia -- the word means "pain in the muscles, ligaments and tendons" -- primarily strikes women aged 20 to 60, Rothenberg said, with most in the 40 to 60 range. Experts aren't sure why the disease affects these women, but some think that children, men and younger women tend to ignore their symptoms, leading to a delay in diagnosis.

A condition some experts believe may be linked to fibromyalgia is chronic fatigue syndrome (CFS), which has no diagnostic exam and is also viewed skeptically. Its paramount symptoms are prolonged tiredness and fatigue, though CFS sufferers sometimes complain of muscle weakness and pain. Many of the same medications are used to treat both CFS and fibromyalgia. But researchers can't agree on whether the two conditions actually comprise one disorder.

A Veteran at 23

Now at age 23, I've been living with fibromyalgia for nearly seven years. I was diagnosed at a younger age than many, but I am not alone. Robin Ray, 27, of Arlington, and I share what experts say is a common fibromyalgia personality trait -- the tendency to be overachievers.

"I've always been a Type A personality," Ray said, adding that her desire to achieve often leads to overwork, which can trigger fibromyalgia flare-ups. While attending college, she was exhausted and sore much of the time, but she found the cause of her discomfort only when she was diagnosed with fibromyalgia at age 21.

When she graduated, Ray was too worn out to pursue a master's degree in music performance, a step she'd always assumed she'd take after getting a bachelor's degree. "I was just too tired and too depressed. I just couldn't do it," Ray said. Up to 20 percent of fibromyalgia sufferers experience depression, according to Daniel Clauw, a University of Michigan rheumatologist.

While I was never depressed, I became frustrated before my diagnosis with the limits that being sore and tired put on my life. I had been poked, prodded, X-rayed and scanned -- all to find out why what appeared to be simple whiplash and knee injuries became excruciating pain that spread from my head to my toes.

The orthopedist I initially saw thought I would heal completely within a few months of my accident. He put me into physical therapy and dismissed my complaints when I told him I wasn't getting better.

Each physical therapy session began with moist heat applied to my back for 30 minutes. Next came increasingly intense and painful exercise on weight machines. A few times the doctor prescribed aquatherapy classes, where the senior citizens who made up the rest of the group would often tell me I was too young to be in the pool with them. The water therapy helped, but its effects wore off as soon as my six-week sessions were over.

My physical therapists would usually end my stints early, telling my doctor they didn't know why I wasn't getting better. My knotted back muscles grew sorer as I was pushed through round after round of intense exercise. Even their attempts to massage my tight muscles proved fruitless and painful.

My orthopedist told me I was young and needed to get over it.

He didn't understand it wasn't that simple. Lacking proper treatment, I continued to miss school nearly every day because sitting upright for my classes was too painful. At first tutors came to my house to help me keep up. But my school didn't have tutors for all subjects, so I quickly fell behind, turning my honor roll grades into incompletes.

My friends kept in touch at first, stopping by the house and calling on the phone to catch me up on the latest gossip. But as my attention turned toward healing my body, I lost touch with my friends and instead focused on researching fibromyalgia. I combed the Internet for health articles daily, looking for anything that might help me. There wasn't much.

Learning the Ropes

New research could address the doubts of those looking for a more objective way to diagnose fibromyalgia. A study done last year by the Georgetown University Medical Center and the National Institutes of Health provides the first strong evidence that fibromyalgia pain is real.

"This is objective evidence that when fibromyalgia patients say they're sore, they actually are," said Clauw, who led the study, which was published in the Journal of Arthritis and Rheumatism.

Researchers monitored brain activity of 16 people with fibromyalgia and 16 healthy volunteers while applying pressure to the participants' thumbs. "If a fibromyalgia patient gets five pounds of pressure to their thumb, that five pounds of pressure is rated [by the patient] as being moderately painful, and we can see [corresponding] brain activity," Clauw said. Healthy volunteers had no brain-activity response to the same amount of pressure and reported that it caused them no pain.

But this study has not silenced fibromyalgia critics. Rheumatologist Nortin M. Hadler, a professor at the University of North Carolina School of Medicine in Chapel Hill, downplayed the study's significance. "Someday we're going to be able to do functional imaging of the brains of elite athletes and show that they're different from you and me," Hadler said. "That doesn't mean they're diseased."

Back to Life

Still, I'm optimistic that Clauw's research will lead to a better understanding of fibromyalgia. My diagnosis gave me an incentive to start planning my future. I finished high school through a community college GED program and started college there so I could live at home and manage my condition better.

But during my freshman year, I experienced the kinds of flare-ups Ray endured as an undergraduate. Mine usually came after days of not sleeping properly, coupled with late-night studying. The key to staying healthy has been planning my schedule so that I can avoid sacrificing sleep.

But it's on those days of painful flare-ups that the reality of this illness strikes me hardest, when I suddenly realize I can't take a trip to the mall with my friends or party on weekends. I'm often told that I'm mature for my age, which I think comes as a byproduct of fibromyalgia. It requires maturity to recognize your own limitations.

The outlook is more promising now than in the past. Clauw said new medications are being developed that increase the levels of the brain chemicals serotonin and norepinephrine, and decrease the levels of a pain-inducing chemical called substance P. Researchers expect the medications to be available within the next two years.

For now, doctors recommend a balanced treatment plan: getting enough rest, exercising regularly, avoiding overexertion and taking prescribed medicines. Mine has allowed me to complete college. I'll graduate with a bachelor's degree in journalism from the University of Maryland, College Park, in December. And I'm doing something I once thought I'd never be able to handle: a 40-hour work week as a reporter for a news service run by the university. I have my bad days and will have more in the future -- though the good days tend to outweigh the bad.

I understand how some might be skeptical about how serious fibromyalgia is. On those days when we feel well enough, fibromyalgia patients get up, get dressed and put on makeup, which gives us the appearance of being healthy.

People can't see the pain or fatigue we feel, a fact demonstrated by the questions they ask when I park in a handicapped space: "Are you really handicapped? You sure don't look like it."

My reaction tells me I've come a long way since that first tender point exam. In those days, I took offense when anyone implied my pain was minor or, worse, not real.

Now I look at these comments as compliments. After all, looking good and healthy is a positive thing -- especially when your days are often spent feeling just the opposite.

January Payne is a Washington area freelance writer.

2003 The Washington Post Company