What began as severe flu-like symptoms was eventually diagnosed as chronic fatigue and immune dysfunction syndrome (CFIDS), more commonly known as chronic fatigue syndrome (CFS).
She said she had what felt like the worst kind of flu complete with respiratory issues, gastro-intestinal issues, a body rash, all-over pain and constant fatigue.
“I could barely lift my head off the pillow some days,” Johnson said. “I would avoid food and drink because I was just too tired to get out of bed to use the bathroom. I was miserable in every way. ‘Tired’ doesn’t begin to describe CFS. Imagine being a wet noodle — unable to move on your own. Having no body strength at all.
“It is very frustrating to not be able to do what I want to do. It’s not a matter of digging deep and finding the gumption to complete a task, attend an event, or assume a responsibility. It is about complete lack of control.”
Her problems progressed to include fatigue, brain fog, tinnitus, sore throat, muscle and joint pain, unrefreshing sleep, night sweats, headaches and low-grade fever. She said the fatigue was the most pronounced symptom.
Dr. Arnold Mech, psychiatrist at the Mech Hospital Alternatives center, said ongoing research hasn’t determined the cause of CFS and because of the lack of awareness, about 80 percent of American CFS cases go undiagnosed.
Chronic fatigue patients who do get answers may have to wait months or even years to learn their diagnoses because of the various symptoms CFS causes.
“Sometimes people have wondered if it really exists,” Mech said. “The trouble is often the case is it takes years to diagnose. We need to increase awareness for the disorder so they can ask the right question.”
He said once symptoms go on for six months or longer, patients must meet four out of eight criteria to receive a CFS diagnosis:
Post-exertional malaise — Patients are sick for at least 24 hours or longer after exercise;
Unrefreshing sleep — Although they are sleeping, the rest is not refreshing;
Muscle pain — Muscle tenderness can hit even without exercise;
Joint pain without redness or swelling;
Headache; Tender lymph nodes and sore throat.
Johnson’s doctor diagnosed her with the disorder after months of tests required to rule out several other possibilities. When CFS became the result, Johnson said she, like many people, didn’t believe it was a real illness.
“I, too, thought it was an ‘illness’ for people who didn’t want to work or play hard. I was shocked,” she said. “He suggested I do research, learn about the illness, and learn to live with it. It felt like a life sentence, and has been, to a large degree.”
Mech said CFS is often misdiagnosed as Attention Deficit Disorder or depression during adolescence and then mistaken for simple emotional phases. As a result, people can go on for decades without answers.
Since her diagnosis, Johnson has tried many conventional and non-conventional treatments. For the past year she has been undergoing treatment at the Fibromyalgia and Fatigue Center in Dallas, taking a combination of supplements to restore her energy as well as anti-viral, anti-bacterial, and anti-fungal drugs to combat hard-to-detect low-grade infections.
Mech said CFS can only be treated by addressing each individual symptom because patients may experience different combinations of problems but, although there is no cure, with the right treatment, CFS sufferers can eventually lead normal lives.
Now that Johnson has found treatment that works for her, she said she feels better than she has in 10 years. She works part-time at her husband’s business and she has learned to appreciate CFS has impacted the course of her life.
“All of us have challenges and burdens we couldn’t have predicted. Now that I’ve learned to live with this, I’m not sure I’d trade it for something unknown. But it is a different life than I envisioned. I was ready to climb the corporate ladder, have a family, and be active in the community. None of those goals have come to pass. Though it’s been a difficult lesson, I’ve learned to find value in the small things I can do for others, and for my husband’s business,” she said.
Both Johnson and Mech stressed the importance of awareness for the disorder.
“This is a disease than can be treated and should be treated,” Mech said.
He said people experiencing similar symptoms should talk to their health care professional, get information about the disorder and get treatment.
In order to help the public understand CFS, a photo exhibit titled “The Faces of Chronic Fatigue Syndrome” has been traveling to cities across the country. The exhibit shares the stories of CFS patients and family members, clinicians and researchers with 10 banners, each more than 7 feet tall, photographed by renowned photographer George Lange. The exhibit will be on the first floor of the J. Erik Jonsson Central Branch of the Dallas Public Library (1515 Young Street, Dallas) through Sept. 30.
For information, visit www.cfids.org or CDC.gov/cfs
