As a 16-year-old high school volleyball star, Charlene Gervais particularly dreaded what long bus rides did to her lower back. Away games in northern Minnesota meant more than an hour rumbling along rural roads, trips that left her stiff and sore. The pain in her spine and hips receded once she began playing, only to fire up when she headed home. And it flared at other times, usually without an obvious trigger.
For three decades Gervais, now a 54-year old Chicago brand strategy consultant, assumed that periodic and often unpredictable back pain was her genetic fate. Her father had suffered from the same problem.
The doctors and trainers Gervais consulted over the years offered various diagnoses including a herniated disk, bone spurs and dysfunction of the sacroiliac joints at the base of the spine. But none of the remedies they recommended diminished her pain or stiffness for long.
To cope, Gervais devised workarounds. She became adept at picking up objects — pens, towels, clothing — with her toes to avoid bending forward at the waist, a movement that could cause her back to lock, leaving her in intense pain and unable to straighten up.
It wasn’t until Gervais reached what she called “a tipping point” — the culmination of nine months of intractable pain — that she decided she needed to change course. She printed out years of medical records and read through them, struck by a word that cropped up repeatedly.
That discovery quickly led to a new approach to the problem that had bedeviled Gervais since adolescence. Its speed and success caused her to wonder whether greater engagement on her part might have short-circuited years of distress.
“I delegate a lot,” she said, adding that she also has a long-standing aversion to “googling medical things.”
“I find experts and trust them to do their work,” Gervais added. She believes that method has worked for her professionally, but had drawbacks when it came to her medical care.
As a teenager, Gervais saw a chiropractor for back pain. “My parents were big fans” as was her family doctor of the treatment that involves spinal manipulations aimed at lessening pain.
Gervais said the chiropractor told her she was suffering from spinal misalignment. Sometimes her back hurt so much she missed volleyball practice. Mostly she tried to downplay the problem for fear of being pulled from games.
“There never seemed to be much of a pattern,” Gervais recalled. She noticed that her condition tended to be worse when she woke up in the morning and improved if she moved around. Sometimes months would go by without any pain.
As an adult Gervais continued to see chiropractors and personal trainers whom she believed could recommend exercises to strengthen her body and treatments to manage her pain. She worked out faithfully at a gym and remembers periodically overdoing it in class.
“I’m competitive and would repeatedly hurt myself rather than scale back,” she recalled.
An avid traveler who has visited 100 countries, Gervais said she remained determined not to let her bad back slow her down. About 15 years ago she earned a pilot’s license, although climbing in and out of a small plane could be tough.
By her early 40s, after years of focusing on things other than her health, Gervais said it was becoming clear that her strategy of benign neglect was faltering. “For me, the method was just push on: I hadn’t spent a lot of time helping myself.”
Once she had to be carried up five flights of stairs to her office after her back locked. Sneezing was particularly fraught unless she was in a fetal position on the floor; otherwise it felt like “a grenade shooting up my spine.” To get to standing from a seated position, Gervais said, she sometimes rolled off the sofa and crawled around her house before attempting to stand. At times turning over in bed was an impossibility.
Medications were largely ineffective. Anti-inflammatory drugs had stopped working, and opioids made her itchy and irritable.
Gervais’s longtime internist was sympathetic.
“She sent me to a lot of specialists — but none that could help me,” Gervais said. She saw an orthopedist and several physical therapists along with an occasional chiropractor. Gervais tried gait training to improve her walk and acupuncture to relieve the pain. And she continued to work out regularly with a personal trainer, including one who was so aggressive that Gervais wept from the pain.
“I believed it was a muscle knot and that it would help,” she said. “I do trust people when they say they’re experts. And I give people the benefit of the doubt. I’m very loyal.”
But one expert whose recommendation she rebuffed was an orthopedic surgeon who recommended fusing her sacroiliac joints.
“It seemed like he was saying, ‘Yeah, maybe this will help,’ ” Gervais recalled. She also eschewed recommendations for cortisone injections, fearing possible side effects.
Common as a cold
While reading through her medical records, Gervais, then 46, said that one thing stood out: repeated references to her joints. An online search for “doctors who fix joints” yielded websites about rheumatologists, internists or pediatricians who specialize in the treatment of joints, muscles, bones and the immune system. Gervais had never seen a rheumatologist and asked her internist for a referral to Arthur M. Mandelin, an associate professor of medicine at Northwestern University’s Feinberg School of Medicine.
Her initial appointment in June 2012 was “the most thorough work-up I’ve ever had,” Gervais said.
Gervais remembers answering yes to a series of questions Mandelin posed: Do you have trouble standing after sitting for a long period? Are your symptoms alleviated after a walk? “It was the first time the right questions were being asked,” she said.
Based on her history and a physical exam, Mandelin told Gervais he suspected she had ankylosing spondylitis (AS), a form of chronic inflammatory spinal arthritis that causes stiffness and back pain. AS, which can affect other parts of the body, results from inflammation between the vertebrae and in the sacroiliac joints. The cause of the disease, which typically develops in late adolescence or early adulthood, is unknown but is believed to result from both environmental and genetic factors.
The severity of AS varies; some people develop a markedly stooped posture or “bamboo spine” in which the bones of the spine do not move because they have fused.
The disease has long been thought to primarily affect men, but recent research has suggested that it may have been overlooked in women, Mandelin noted. Treatment involves medications, exercise and sometimes surgery.
Delayed diagnosis of AS, Mandelin said, is the rule, although the 30 years it took Gervais is on the longer side.
“Back pain is the common cold of musculoskeletal disease,” Mandelin said. There are many causes and sorting them out can be tricky, he said, adding that he had the benefit of Gervais’s long history as he tried to determine what might be wrong. “Most causes of chronic back pain don’t have great testing.”
Doctors may not have considered AS in Gervais’s case because they were unaware of it.
“There’s a maxim from my training: ‘Your eyes will not see what your mind does not know,’ ” he observed.
Some people with AS delay seeking help because over-the-counter anti-inflammatory drugs are effective initially, then stop working because they are inadequate to treat the level of pain.
“The thing that caught my attention,” Mandelin said, “is that her back pain has these inflammatory features . . . she had trouble first thing in the morning and improved after she moved.” The opposite would be true if her pain was the result of an injury: rest would lessen the pain.
“And there was no inciting event,” such as an injury, he noted.
Early diagnosis and treatment are important, Mandelin said. “Intervening early and aggressively has the best chance to control the disease” and reduce damage to the spine and other parts of the body.
To help confirm the diagnosis, Mandelin ordered blood tests, including one for HLA-B27, a protein found on the surface of white blood cells that increases the risk of developing AS but is not a screening test.
Gervais, whose test was negative, said she was elated to receive a provisional diagnosis and even happier shortly after starting a potent anti-inflammatory drug called indomethacin.
“It was literally life changing,” she said. Within days “I could bend forward like a normal person.”
Her “exuberant” response to the drug was the clincher for Mandelin. “That was impressive,” he said. “In rheumatology, we have very, very few blood tests that are gold standard reliable.”
But Gervais was unable to tolerate the drug, which left her dizzy and confused. “I’d find myself just staring at my desk in a total fog,” she recalled. Piloting a plane was out of the question.
She began receiving biweekly injections of Humira instead. The drug suppresses the immune system and is used to treat other forms of arthritis and Crohn’s disease, which sometimes accompanies AS.
“We were looking for medication that would keep things on a low simmer,” Mandelin said. The drug has worked well for Gervais, who has not experienced side effects. Her condition has remained stable for the past decade, said Mandelin, who sees her every six months.
Gervais said she now moves without difficulty. She walks five miles a day and works out three times a week without pain.
“I’m good — really good,” she said. A brief flare several months ago triggered by gardening left her wondering how she managed all those years.
“What stands out is the incredible frustration of not getting a valid diagnosis,” she said. “Why is it that nobody put it together?”