PT in motion (American Physical Therapy Association) blog post, by Eric Ries 13 September 2017: The Real Story About Chronic Fatigue Syndrome
Chronic fatigue syndrome (CFS) has come a long way since the 1980s, when it was widely dismissed as “yuppie flu” and was suspected by many health care providers of being a psychological rather than a physiological condition.
(A note on terminology: CFS goes by at least 3 names, per the sidebar below this article. As CFS remains the one by which the illness most widely is known, that’s the term PT in Motion is using.)
Nicole Rabanal, PT, was among the skeptics. Until late 2014 she considered “chronic fatigue syndrome” to be “a catch-all term that meant medical science didn’t know what the patient had or didn’t have.”
She changed her mind the morning she woke up “feeling, out of the blue, like I’d been hit by a truck—with severe flu-like symptoms, severe eye pain, headache, ‘heavy’ head, muscle weakness, random numbness and tingling sporadically throughout my body, and difficulty breathing and swallowing.” This sudden and dramatic shift in the then-46-year-old’s health led her on a year-long odyssey through the health care system, during which she saw 17 specialists and was at various times told she had depression, Lambert-Eaton myasthenic syndrome, and myasthenia gravis.
When her fifth neurologist at last hit the nail on the head—CFS is a diagnosis of exclusion for which there is no test—he told her, “Stop doctor-shopping, get off your own back, and wrap your head around this.”
“What do you do with that?” she asks. “I decided that I needed to figure out how to manage this on my own.”
As luck or fate would have it, she soon happened upon—literally dragged herself to—a symposium on CFS at an APTA Combined Sections Meeting. What Rabanal learned that day in Anaheim, California, led her to a treatment relationship with the Salt Lake City-based Bateman Horne Center, which specializes in CFS and fibromyalgia.
Today, her life is “all about pacing and management.” Rabanal, who owns Kinetic Energy Physical Therapy in Steamboat Springs, Colorado, describes her highly regimented routine.
“I work a 2-hour shift in the morning,” she says. “I come home and lie down in a quiet room—with oxygen, and with ice on my eyes and head—for 4 hours. I go back to work for another 2-hour shift. I return home to again lie down with ice and oxygen. I get up and have dinner with my family, and am in bed no later than 8 pm.”
On weekends, she continues, “I stay quiet all day, either lying down or resting. On Sunday, I might get out and do something with my kids for an hour. But that’s it. There’s no going out to eat, and only minimal socializing with friends because prolonged talking is very draining for me. I have significant sensitivity to light and sound, which greatly limits the surroundings in which I place myself.”
The upside, if you want to call it that, has been the demonstrated value of Rabanal’s professional training.
“The knowledge and experience of having been a PT for nearly 25 years has been incredibly helpful to my personal treatment plan,” Rabanal says. “Listening for and understanding the signs of when I’m pushing beyond my energy limitations, then implementing appropriate exercise and stretching, is a big part of the management puzzle. This of course is what PTs do every day with patients, in one form or another—we listen closely and apply our knowledge to their presentation and what we learn from them.”
“I’ve made significant modifications to my treatment style,” Rabanal adds. “I sit a lot, and lean or move to help manage my orthostatic intolerance—which does not allow me to stand still, unsupported, for more than 5 minutes. I co-treat with other therapists in my clinic to perform manual techniques that I no longer can do because of my limited strength. During my work periods, I use a Fitbit to monitor my heartrate and its silent timer to remind me when take my medications.”
“It’s a huge challenge,” she says. “But I love what I do, so I’m determined to make it work.”
Rabanal has a message for her fellow PTs.
“We must know the criteria for patients to meet this diagnosis—significant reduction or impairment in ability to engage in pre-illness activity levels, accompanied by fatigue, for more than 6 months; post-exertional malaise; unrefreshing sleep; and either cognitive impairment or orthostatic intolerance. Because if we aren’t correctly identifying this patient population, it’s easy to push patients into a treatment or exercise program that will make their condition worse. They are likelier to be noncompliant, disinclined to follow up with care, and present as a returning patient whose condition never seems to improve.”
There is a great deal that PTs can do to help patients with CFS of all severity levels, say those who PT in Motion contacted for this article. It begins with listening and a thorough patient interview and extends through education, individualized goal-setting, pacing, movement and strengthening exercises, manual therapy, and appropriate referral.
What PTs can offer, too, is what people with CFS arguably need the most, says Jessie Podolak, PT, DPT, owner of Phileo Health in Altoona, Wisconsin, and a certified therapeutic pain specialist. “We can bring them hope.”
