It took bestselling author Laura Hillenbrand four years to write Seabiscuit: An American Legend—and she wrote it predominantly from her bed while struggling with Chronic Fatigue Syndrome (CFS).
Long considered a virus that attacks the immune system, CFS symptoms (diagnosable only after they’ve been present for six months) include loss of memory, feeling unrefreshed after sleep, muscle and joint pain, headaches, sore throat, and tender lymph nodes. Traditionally, CFS has been tough to diagnose because the symptoms mirror so many other illnesses, among them Lyme disease, mononucleosis, lupus, fibromyalgia, hypothyroidism, and multiple sclerosis.
In a USA Today interview, Hillenbrand said, “(CFS) is absolutely intolerable at times. In the early 1990s I could not read or write (because of vertigo). There were months when I couldn’t get down the stairs. I simply lay in bed and hung a watch on the windowsill and watched the time go by.”
As have many of the approximately four million people in the United States afflicted with CFS (75% of them women), Hillenbrand had a hard time finding a diagnosis. Twenty-six-year-old Carly understands that predicament all too well. She told me: “I wake up and it feels like every part of my body is as heavy as bricks. When I finally muster the strength to head to the bathroom, I feel weak; when I get out of the shower, I’m so lightheaded I have to lie back down.”
While she’s experienced severe symptoms for over a year, it took almost that long for Carly to receive a diagnosis: “I made the rounds of every kind of doctor I could think of: physician, gynecologist, endocrinologist, parisitologist. They ran multiple tests, but the results were always specifically negative. Still, we didn’t have an answer for what was generally wrong: I was physically exhausted all the time.”
The effects for Carly have been serious. Friendships, relationships, and career have all experienced significant problems.
“Friends haven’t understood why I was being so reclusive. They only know that I don’t show up to anything—no parties, no girls’ night out. My boyfriend has been very understanding, but this is taking a toll on him, too. And I just had to quit my job because I simply can’t sustain enough energy to work. It’s all very depressing.”
In a release from Stanford University School of Medicine, Dr. Jose Montoya asserts, “Chronic fatigue syndrome is one of the greatest scientific and medical challenges of our time.”
How are sufferers supposed to get an accurate diagnosis and understand what’s happening to them? Dr. Montoya has an idea and it all relates to clues in your brain.
New Research Might Lead to Quicker CFS Diagnosis
Because chronic fatigue can be associated with many illnesses and because there is no conclusive CFS test, patients are often misdiagnosed or considered hypochondriacal. New research recently published in Radiology magazine may offer hope for more efficient diagnostic processes, however. Dr. Montoya, along with a team of colleagues at Stanford University School of Medicine, used three types of brain-imaging technology and discovered that the brains of CFS patients differ from healthy subjects in three significant ways:
Less overall white matter (bundles of nerve cells that carry nerve impulses between neurons). This finding was not surprising: viruses cause inflammation in the body that ordinarily reduces white matter.
Specific brain abnormality. Found in the right arcuate fasciculus, the abnormality exists in the part of the brain that connects the frontal and temporal lobes. Researchers found that the severity of the abnormality directly correlated to the severity of CFS symptoms.
Thickened gray matter. Appearing in two areas of the brain connected to the right arcuate fasciculus brain scan, images of subjects showed thickening in specific areas of gray matter (the reservoir of the brain’s neurons).
While Dr. Montoya and his team agree that further research is necessary to confirm and expand the implications of their study, the results may open a hopeful door for future CFS patients. The clarity introduced by brain scans could make CFS diagnosis more efficient, leading patients to treatment at a much quicker rate.
Do I Have CFS? Take the CFS Quiz
If by now you’re wondering whether the fatigue and malaise you feel might be CFS, answer the following four questions to rate the likelihood:
- Do you frequently experience long periods of fatigue unrelated to physical exertion?
- Does the fatigue continue despite sustained rest?
- Are you restricting your activities due to the severity of the fatigue?
- How many of the following have you experienced for a period of at least six months:
- Reduced short-term memory or concentration
- Sore throat
- Tender lymph nodes (especially neck or armpit)
- Muscle pain
- Multi-joint pain (without joint swelling or redness)
- Unrefreshing sleep
- Fatigue after exercise that lasts more than 24 hours
If you recognize your own situation in the majority of these questions, it would be worth connecting with your doctor. Many of these symptoms mirror other illnesses, so it’s best to rule them out. And then, perhaps, seek a physician who specializes in CFS. Not everyone in the mainstream medical community acknowledges CFS, so finding practitioners who understand it will be critical to recovery.
How to Get More Energy
Finding relief from CFS is highly personal. According to the Mayo Clinic, treatment must be individually tailored to patients but may include approaches in the following areas:
Antidepressants: support the emotional and psychological drain caused by chronic fatigue.
Sleeping aids: help induce more effective and restorative sleep.
Therapy: helps identify best practices and processes as patients learn to live with chronic pain and exhaustion and the limitations that places on life, plus self-worth and esteem.
Graded exercise: physical therapists can offer ideas for how to introduce levels of movement according to what a body can sustain at any given time.
Healing CFS happens for different people in different ways. For some, symptoms lessen over time. Others, like Hillenbrand, suffer for years. Dr. Derek Enlander is a leading specialist in CFS who supports the theory that it represents an immune system dysfunction. He developed an injection that contains an immunoprop, a substance that enhances the body’s immune response. According to his data, 65% of his patients recover after this treatment.
Living with chronic illness can demolish what we take for granted as a productive lifestyle. Still, while waiting for symptoms to abate, many patients do find ways to live a meaningful life. For Hillenbrand, that meant writing.
“Writing [Seabiscuit] was a matter of dignifying my place in this world,” she says. “I wasn’t going to let [CFS] defeat me.”
Hillenbrand is right on in her approach. While we know that having a meaningful goal or project can increase feelings of self-esteem, research also confirms that positive thinking and optimism actually increase cell-mediated immunity. Finding ways to experience instances of happiness—even while you’re feeling miserable—can be an effective element in both healing and having a meaningful life despite chronic fatigue.