Back pain plagued her for 30 years. A recurring clue triggered a late diagnosis.

As a 16-year-old high school volleyball star, Charlene Gervais dreaded what long bus rides put her lower back through. The away games in northern Minnesota have meant more than an hour of rumble along rural roads, trips that have left her stiff and sore. The pain in her spine and hips disappeared once she started playing, only to flare when she got home. And it did erupt at other times, usually with no obvious trigger.

As a teenager, Gervais consulted a chiropractor for back pain. “My parents were huge fans,” as was her family doctor, of the treatment that involves spinal manipulation aimed at reducing pain.

Gervais said the chiropractor told her she was suffering from a spinal misalignment.

“There never seemed to be a lot of role model,” Gervais recalls. She noticed that her condition tended to get worse when she woke up in the morning and improved when she moved. Sometimes months went by without any pain.

As an adult, Gervais, now 54, a branding consultant in Chicago, continued to see chiropractors and personal trainers who she said could recommend exercises to strengthen her body and treatments to manage. his pain. She trained faithfully in a gym and remembers periodically doing too much in class.

“I’m competitive and I would hurt myself multiple times rather than cut myself down,” she recalls.

A avid traveler who has visited 100 countries, Gervais said she remains determined not to let her back pain slow her down. About 15 years ago she obtained a pilot’s license, although getting on and off a small plane can be difficult.

In his early forties, after years of focusing on things other than his health, Gervais said it was becoming clear his strategy of benign neglect was faltering. “For me, the method was just pushing. 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 was locked. The sneezing was especially painful unless she was in a fetal position on the floor; otherwise, I felt like I had “a pomegranate in my spine”. To get up from a sitting position, Gervais said, she would sometimes roll off the couch and crawl around her house before trying to get up.

The drugs were largely ineffective. The anti-inflammatories had stopped working and the opioids were itching and irritable.

Gervais’ longtime internist was sympathetic.

“She sent me to see a lot of specialists – but none could help me,” Gervais said. She saw an orthopedist and several physiotherapists as well as an occasional chiropractor. Gervais tried gait training to improve his walking and acupuncture for pain relief.

“I thought it was a muscle knot and that would help,” she said. “I trust people when they say they’re experts. And I’m giving people the benefit of the doubt. I am very loyal.

Reading her medical records, Gervais, then 46, said that one thing stood out: repeated references to her joints. An online search for “doctors who repair joints” resulted in websites about rheumatologists, internists or pediatricians specializing in the treatment of joints, muscles, bones and the immune system. Gervais had never seen a rheumatologist and asked his internist to refer him to Arthur M. Mandelin, associate professor of medicine at the Feinberg School of Medicine at Northwestern University.

His initial appointment in June 2012 was “the most comprehensive review I have ever had,” said Gervais.

Gervais remembers answering yes to a series of questions asked by Mandelin: Do you have trouble standing after sitting for a long time? Are your symptoms alleviated after walking? “It was the first time the right questions were 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 arthritis of the spine that causes stiffness and pain. 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 usually develops in late adolescence or early adulthood, is unknown, but it is believed to result from environmental and genetic factors.

The disease was long thought to affect mainly men, but recent research has suggested that it may have been overlooked in women, Mandelin noted. Treatment involves medication, exercise, and sometimes surgery.

Late diagnosis of AS, Mandelin said, is the rule, although the 30 years it took Gervais was longer.

“Back pain is the common cold of musculoskeletal diseases,” Mandelin said. There are many causes and sorting them out can be tricky, he said, adding that he has benefited from Gervais’ long history as he tries to figure out what might go wrong. “Most causes of chronic back pain don’t have good tests.”

Doctors may not have considered AS in Gervais’ case because they did not know.

“There is a maxim from my training: ‘Your eyes will not see what your mind does not know’,” he observed.

Some people with AS are slow to seek help because over-the-counter anti-inflammatory drugs work at first, then stop working because they aren’t enough to treat the pain level.

“What caught my attention,” said Mandelin, “is that her back pain has these inflammatory features… she had problems in the morning and got better after moving.” The reverse would be true if his pain was the result of an injury: rest would decrease the pain.

“And there was no triggering event,” such as an injury, he noted.

Early diagnosis and treatment are important, Mandelin said. “Intervening early and aggressively has the best chance of controlling the disease” and reducing 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, who tested negative, said she was thrilled to receive a provisional diagnosis and even happier soon after starting a strong anti-inflammatory drug called indomethacin.

“It literally changed your life,” she said. Within days, “I could lean forward like a normal person.”

His “exuberant” response to drugs was decisive for Mandelin. “It was impressive,” he said. “In rheumatology, we have very, very few reliable gold standard blood tests. “

But Gervais was unable to tolerate the drug, which left her dizzy and confused. “I found myself staring at my desk in total haze,” she recalls.

She started receiving bi-weekly Humira injections 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 drugs that would keep things low,” Mandelin said. The drug worked well for Gervais, who did not experience any side effects. Her condition has remained stable for the past decade, said Mandelin, who sees her every six months.

Gervais says she now moves without difficulty. She walks eight kilometers a day and trains three times a week without pain.

“I’m fine – really good,” she said. Several months ago, a brief flare-up triggered by gardening left her wondering how she had been doing all these years.

“What stands out is the incredible frustration of not getting a valid diagnosis,” she said. “Why didn’t nobody put it in place?” “

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