There are days we cannot anticipate. They are filled with steps and strides, gaits and shuffles.
Kristin Coppens has had more than most. Her path has been long, marked by pain and fatigue, frustration and weakness.
She’s had to find the strength and determination to demand more. More knowledge, attention, treatment, understanding.
Why, at 29, does she feel this way?
Coppens’ journey illustrates the many challenges of diagnosing maladies that, from one symptom to the next, are often difficult to pinpoint.
It’s no easy feat for a doctor to recognize clues that lead to a diagnosis and, eventually, help a patient identify the appropriate treatment.
“It is sometimes more art than science,” said rheumatologist Andrew Head, MD.
A winding path
About five years ago, doctors told Coppens she had severe mono, which is caused by the Epstein Barr virus. Many adults get it at some point and, in some cases, it can create symptoms of chronic fatigue.
Looking back, Coppens never felt healthy after that.
She developed hip and back pain, even as her X-rays appeared normal. She got an initial diagnosis of fibromyalgia, a chronic widespread pain problem.
Still, her lower back continued to hurt.
She went to specialists, including a pain specialist who gave her cortisone shots. At age 24, she underwent a full body scan that found evidence of inflammation in her lower back, hips and pelvis.
At that point doctors referred her to West Michigan Rheumatology, where she met with Dr. Head, who grew concerned that an autoimmune disease might be causing the inflammation.
Dr. Head initially diagnosed what rheumatologists call undifferentiated spondyloarthropathy, a form of inflammatory arthritis in the spine called ankylosing spondylitis.
The condition, sometimes challenging to diagnose, is identified through history, physical examinations, labs and imaging techniques such as X-rays, MRIs, bone scans.
It also frequently involves ruling out other causes.
“The challenge is you see someone who has any number of symptoms and you don’t know what it is,” Dr. Head said. “We methodically work through a number of possible causes, use lab tests, imaging and sometimes have to try medications to treat the symptoms while following the patient carefully over time.”
That’s how Coppens came to hear a new diagnosis: seronegative rheumatoid arthritis.
The road to diagnosis is as fascinating as it is detailed.
Picture yourself on that path—the journey, the struggles, the unknowns, the slow emergence of a greater understanding.
Dr. Head detailed the markers along Coppens’ road.
“Her initial lab tests for rheumatoid arthritis were negative,” Dr. Head stated. “She had a very high marker for inflammation and she had evidence of arthritis in her back. We tried numerous treatments including corticosteroids at fairly high doses that would make the inflammation go down, but the medicine has a lot of bad side effects so could not be continued long term.”
Corticosteroids can sometimes cause more problems than they treat. They can trigger bone-weary fatigue, depression, joint pain, weight gain. More depression.
“A number of traditional rheumatoid arthritis drugs were tried and failed to lower the inflammation and did not help the back pain,” Dr. Head said. “Over time, Kristin developed more joint pains outside of the spine.
“Her hands and wrists hurt, they swelled,” he said. “She had knee pain and swelling. Eventually, treatment was escalated to using stronger drugs that block her immune system.”
Coppens began a chemotherapy drug, methotrexate, injected under her skin once a week.
“We also added the newer biologic drugs approved for rheumatoid arthritis,” Dr. Head said. “Kristin seemed to do the best on one in particular, Remicade IV, every six weeks.”
She continued this for about two years.
“Unfortunately, she developed some lab abnormalities that were considered possible side effects to Remicade, so we had to stop,” Dr. Head said. “At one point we considered she might have lupus, and we also sought out a second opinion. But no one could find any other diagnosis or intervention to add to what we were doing locally.”
After stopping Remicade, Coppens’ condition worsened, Dr. Head said.
“Her pain was not controlled, her markers of inflammation were extremely elevated and we were really struggling to find a solution,” the doctor said. “At that point we decided to shift treatments and we started another new biologic medication used to treat rheumatoid arthritis.”
The medication: Actemra, injected under the skin once a week.
Road to relief
It’s hard to describe relief. It can overwhelm, intimidate and confuse. It can be elating and terrifying.
Will it last?
“When we repeated her lab tests on the new medication, I was happy to see her inflammatory markers,” Dr. Head stated.
Those markers, once about 10 times beyond normal, soon fell within the low normal range.
“More importantly, Kristin was feeling better and her joint pain and swelling were down,” Dr. Head stated.
Coppens said doctors aren’t sure how long she’s had autoimmune problems.
Although some people test positive for a genetic marker, Coppens didn’t. Sometimes, the medical world simply can’t determine what causes certain autoimmune diseases.
Coppens still struggles with the daily challenges of her autoimmune disease. She takes regular medications and battles symptoms of the underlying fibromyalgia.
The most debilitating part is the fatigue, she said. She doesn’t know when symptoms will flare or how it might shatter her plans on any given day.
She’s also on daily antidepressants, vitamins and a muscle relaxer to help with the symptoms of fibromyalgia.
That word alone, fibromyalgia, is often misunderstood. It’s partly from Latin (fibro-, meaning fibrous tissues) and partly from Greek (-myalgia, meaning muscle and pain). It can be extremely debilitating.
It takes a lot of energy for Coppens to accomplish even the most mundane tasks. Instead of vacuuming, cleaning and tackling laundry in one evening, she splits the tasks over time. She paces herself, as the best long-distance runners do, so she does not slow down. That takes strength and perseverance.
It is important to Coppens that she be understood as more than her ailment. “I make sure it doesn’t become the only thing about me,” she said.
One of the positive outcomes from her experience: She has become an advocate for patients.
She speaks at conferences and uses social media to connect with others who’ve been diagnosed with debilitating conditions. She also writes a blog about her experiences, aptly named “Chronically Kristin,” which she rekindled recently after a hiatus.
A segment from an entry in summer 2016: “So what is it like to be me every day? It’s a lot like a 28-year-old’s mind stuck in an ailing 85-year-old body.”
The entry continued: “Let’s get pretty real around here—I am probably one of the most stoic people you will ever meet. In fact, of the handful of therapists I’ve had in the past six to eight years, every single one of them has uttered those words: ‘You are an extremely stoic person; that brave face you put on does wonders to fool everyone around you.’”
Through online support like this, and through in-person groups and other avenues, Coppens encourages people to find someone to lean on.
“It can be extremely lonely having chronic diseases,” Coppens said.
“I promise, you’re not the only one.”