Chronic fatigue upended my life, but it took years to figure out why

Chronic fatigue upended my life, but it took years to figure out why


I was on a ladder leading to a cliff dwelling in Mesa Verde National Park when it first hit me: a crushing fatigue defying any ordinary sense of the word. I felt as if I couldn’t take another step and breathe at the same time. Panicked, I called up to my husband, Don, for help. It was early 1994. I was 29 years old and had been married for a year and a half.

The Mesa Verde episode lasted only a few minutes, the disabling sensation disappearing after resting in the shade. We attributed the incident to dehydration and flew home to D.C. I returned to my litigation job at the Justice Department, with its unpredictable periods of intense stress. Ever since contracting pericarditis — an irritation of the thin sac around the heart — the previous winter, my energy at work had diminished.

Then, in April 1994, three months after the Colorado trip, I woke up with my body locked in pain — as if nails had been hammered into my joints overnight. When I tried to get out of bed, I found I couldn’t move. I recognized the same debilitating sensation from Mesa Verde. Except this time, it didn’t go away. I called in sick to work, certain I’d be fine the next day, but the following morning I felt worse. After taking weeks of sick leave with no improvement, I had to request a leave of absence from the office.

At home, I remained glued to my bed. Walking to the bathroom felt like a herculean task. I showered sitting on a chair as I couldn’t stand for long; even breathing seemed to require more energy than I had. Bright lights and loud noises made my spine spasm; night sweats drenched my sheets. One day, my spine felt like jelly and couldn’t hold my torso upright; on another, my muscles felt so weak that a paper towel roll seemed to weigh a ton. My head throbbed, my throat was raw, my neck glands perpetually swollen.

My internist ordered routine bloodwork and reported back that I had tested positive only for Lyme disease. She treated me for the tick-borne disease, but my symptoms persisted. She then tested for rheumatoid arthritis, lupus, Epstein-Barr. All negative. Baffled, she referred me to specialists.

They were equally perplexed. Desperate for a diagnosis, my husband and I consulted a prominent physician at Massachusetts General Hospital. After reviewing my medical history and examining me, he ordered more tests.

On a follow-up visit, he had a resident in tow. He physically examined me again, this time with step-by-step narration, as if I were a cadaver in anatomy class. Then he addressed the resident: “As confirmed by our diagnostic testing, there is nothing physically wrong with this patient.”

He scribbled on a sheet of paper and handed it to me.

“Here’s the name of a psychiatrist at Georgetown,” he said. “He’ll be able to help you.”

I curled up on the exam table, too numb to cry. Rather than admitting any diagnostic failure, the doctor dismissed me as mentally ill.

I went home to my parents to give Don a break from caregiving. Each morning, I practiced taking baby steps down the hallway of my childhood home, gradually increasing the number of steps over time. Slowly, my energy trickled in and my joint pain receded. I returned home to D.C. and went back to work. My symptoms disappeared — but we didn’t know what had caused them or why I’d recovered.

In 1997, after almost two symptom-free years, the mystery illness struck again. First I was struggling to focus on work; then the immobilizing sensation was back, pinning me to bed like a concrete block. After exhausting my remaining leave, I requested another extended absence from work. Although less sympathetic this time, office management eventually agreed to an extension of unpaid leave.

A work friend stopped by to visit. She seemed taken aback to see me.

“B-but … you don’t look sick!” she said.

“Well, I feel like crap,” I replied, my cheeks burning.

I refused to see any more doctors after the Mass General experience. We tried to adjust to the fact that I might not recover; the biggest challenge was the fluctuation of my symptoms each day. A “good” day meant waking up with minor joint pain and being able to move. A “bad” day had me immobilized and in pain.

I worried about being a burden to Don. He had graduated a year ahead of me from Harvard Law School, but we met only after we’d both moved to D.C. for work. Despite his cheerful demeanor, it was inevitable that the strain of my illness would get to him. We’d been married five years at this point and I’d been sick half the time. One weekend, I overheard him talking to his sister on the phone:

“The doctors aren’t helping,” he said. Then I heard a muffled sob and my guilt exploded. I was dragging him down with me.

My mother came to help out. After several “good” days, we ventured outside for a walk. I was triumphant when we reached the end of the block. But the immobilizing sensation struck on the way back; I had to lie by the road for over an hour before I could complete the short walk home.

It was Don who led the way to a diagnosis. Plugging my wide-ranging symptoms — fatigue, joint pain, muscle weakness, night sweats, brain fog — into an internet search (still a fairly novel concept in 1997), he found an article on fibromyalgia (FM), closely linked to chronic fatigue syndrome (CFS). The article’s author and leading expert was Daniel J. Clauw, then head of rheumatology at Georgetown University Hospital.

After testing and reviewing my case history, Clauw said he was sure I had a combination of FM and CFS. He explained that the disease seemed to follow a severe viral infection (perhaps the cause of my pericarditis) or serious trauma, altering the central nervous system and making it oversensitive to pain and sensory processing.

Our relief at the diagnosis abated when we learned that the disease is chronic and uncurable. Yet Clauw (now director of the Chronic Pain and Fatigue Research Center at the University of Michigan) was confident he could help me regain basic functioning with medication, graded exercise therapy and cognitive behavioral therapy. He explained that the key trigger for symptoms was physical and emotional stress, emphasizing that long-term disease management required major lifestyle changes to reduce stress.

I began Clauw’s treatment. His prescription medications — the antidepressant Wellbutrin for energy and Flexeril for joint pain — boosted my physical function. Exercise therapy — gradually increasing my time walking on a treadmill — further improved my energy level as long as it was done when my symptoms were in remission. However, significant stress or infection or exercise while I was symptomatic erased any progress. At some point he added yet another type of steroid, Florinef, to my drug regimen, which substantially boosted my physical function.

By mid-1998, I was clearly on the road to recovery.

As my health improved, Don and I began discussing having kids. Clauw advised against pregnancy, warning that the physical demands of delivery and lack of rest with a newborn would probably trigger a relapse from which it would be difficult to recover as a new mother. He also warned that my medications had not been adequately studied in pregnancy.

I had to choose: stop the meds responsible for my recovery, risking relapse, so we could try for a baby; or stay on the drugs and give up on having children of our own. By this time, I was 35 years old. I decided to get off the medication bit by bit. This was harder than anticipated: My symptoms flared with every fraction I shaved off a pill. I used acupuncture to manage my joint pain and meditation to control stress.

By September 2000, the meds were finally out of my system and I was still able to physically function. We went on to have two healthy baby girls. As Clauw predicted, my symptoms erupted after each delivery and I had to resume all my previous medications.

Almost 30 years have passed since that day at Mesa Verde. Now 59, I never went back to work as a lawyer. Today, I can mostly manage my symptoms provided I do the following, every day: take my prescription medications; maintain a low-stress environment; get a “sensory break” midday (rest in a dark, quiet room); exercise only when symptoms permit; get adequate sleep; pace my activities (stop to rest before triggering symptoms); and avoid catching a bacterial/viral infection.

It’s not easy to satisfy all these requirements every day. On “good” days, I’m tempted to push through to finish a task rather than stopping to rest and leaving it incomplete. Similarly, it’s hard to resist walking a little farther to reach a destination even when I sense symptoms coming on.

Yet I know I’m luckier than most. Millions live with far greater disabilities and chronic pain and can face financial ruin if they cannot work. No job often means no health insurance; many never had health coverage in the first place.

However, there is one challenge I share with other CFS sufferers: the insidious stigma attached to the disease. For decades, the illness has been dismissed by doctors and the public. Inclusion of the word “fatigue” in the syndrome’s name leads to a misconception that CFS “fatigue” is synonymous with ordinary tiredness. It is not. One CFS patient likened it to having one’s life force sucked dry by a vampire. For me, it starts with a heaviness in the lungs and difficulty breathing, potentially progressing to complete physical immobilization.

Skepticism of CFS is reinforced by the invisibility of symptoms, the lack of a single diagnostic marker, fluctuations in symptom occurrence and severity, and the fact that female patients far outnumber male. Women self-reporting invisible symptoms have historically been dismissed as mentally unstable — as I was by the Mass General doctor.

The National Institutes of Health now identifies CFS as “a serious, chronic, complex, and systemic disease associated with neurological, immunological, autonomic, and energy metabolism dysfunction.” Yet those with the disease (including me) are told they’re “just depressed,” unmotivated or lazy.

Today, between 836,000 and 2.5 million U.S. adults suffer from CFS, according to the Centers for Disease Control and Prevention, and some 4 million suffer from fibromyalgia. According to a Mayo Clinic report by top clinicians in the field, up to 75 percent of CFS sufferers are unable to return to their previous jobs, and only an estimated 5 percent make a full recovery.

It has taken a global pandemic to bring long overdue attention to CFS. Early in the covid-19 pandemic, Anthony Fauci, then director of the National Institute of Allergy and Infectious Diseases, noted that long-covid patients (those remaining unwell over three months after the original covid-19 infection) seemed to experience a post-viral syndrome “strikingly similar” to CFS.

Among the overlap of symptoms: post-exertional malaise, unrefreshing sleep, widespread musculoskeletal pain, orthostatic intolerance — which causes rapid heartbeat and dizziness when standing upright — and memory and attention issues.

The CDC’s National Center for Health Statistics reported last year that 1 in 13 American adults who had been sickened by covid reported experiencing long covid. This has boosted efforts and funding directed at understanding and treating post-viral illnesses like CFS. In the meantime, long-covid patients may benefit from strategies developed by CFS patients like me to manage symptoms and cope with the disease.

CFS has changed the course of my life. On the one hand, the premature end to my legal career and financial independence has been demoralizing, as is my constant need to monitor my health and energy levels. Yet living with CFS has oddly given me a more healthful outlook on life, both as a mother and a writer. I once believed that good career and life prospects were dependent on attending elite academic institutions and working around the clock in a high-profile job. But I now know that alternative life paths are no less worthy or fulfilling.

Until medicine catches up, however, those disabled by CFS and long covid will continue to suffer and have limited life choices.

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