Medical Mysteries: A rolled ankle set this runner down a painful path

A combination of arthritis and the itchy skin disease psoriasis, psoriatic arthritis affects an estimated 1.5 million Americans. (Sebastian Kaulitzki/Science Photo Library via Getty Images)

Catherine Matacic walked briskly through Franklin Park in downtown Washington, her mind focused on her new job, when she caught her right foot on a crack in the sidewalk, then slipped out of her wedge heels and rolled her ankle. The pain and swelling were mild, and Matacic, a runner, took it easy for two weeks. Then the same thing happened again.

After a six-week rest, Matacic, then 33, resumed running. But within five minutes of leaving her home for a three-mile run in June 2015, she felt something strange: Her ankle seemed to be flooded by warm liquid. She looked down and was horrified to discover it had suddenly swollen to twice the size of her left ankle.

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For the next eight years, Matacic, a science editor, tried without success to determine the reason for increasingly severe ankle pain that she treated with physical therapy before consulting several doctors. Sometimes her ankle grew so puffy and disfigured it resembled a sausage; at other times it was so weak she had trouble standing and couldn’t climb stairs.

The underlying cause was unmasked in January 2023 when Matacic consulted a doctor in a different specialty as a prerequisite for surgery. The specialist’s hypothesis, which proved to be correct, led to effective treatment.

Matacic has since pondered why an accurate diagnosis took so long. She said she believes she wasted years relying on physical therapy and had assumed, erroneously, that if she was diligent about doing the prescribed exercises she would get better.

“I think my nonchalance - that I’m tough and can tough it out - was detrimental,” she said.

Until the end of her increasingly floundering quest, Matacic added, most of the doctors she saw focused on relatively common causes of ankle pain and may have overlooked clues that pointed in a different direction.

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PT or MD?

Matacic, now 42, had long believed in the healing power of physical therapy. For years it enabled her to quickly recover from an occasional sprained ankle or pulled hamstring.

So when she rolled her ankle in April 2015, she started PT. Eight months later her ankle remained weak, and she had developed stiffness in her calf. Matacic tried to run, but her ankle repeatedly swelled, accompanied by a lingering ache. It didn’t occur to her at the time, she said, to consult a doctor; her former primary care physician had joined a concierge practice and she hadn’t found a replacement.

In February 2016 she switched physical therapists. Three months later, there was still no improvement.

In July, Matacic saw a family medicine physician whose practice was recommended by a co-worker. After an X-ray and an MRI failed to uncover anything definitive, the doctor said she wasn’t sure what was wrong. She told Matacic it was possible she had an unspecified neurological disorder or an orthopedic problem and offered two options: a trial of gabapentin, a widely prescribed (and overprescribed) medication used to treat nerve pain or a referral to an orthopedic surgeon. Matacic opted for the latter.

In September, she saw a Washington orthopedist, a visit she described as notable for its brevity. The surgeon, she said, swept in for about five minutes, said he saw nothing on a new X-ray and MRI and recommended another round of PT.

Physical therapist No. 3 thought the hamstring Matacic pulled in 2014 might have affected her gait, causing her calf to atrophy and her ankle to weaken. Matacic spent the next six months doing exercises to improve her strength and balance. In April 2017 she was elated to be able to run the Cherry Blossom 5K race without pain.

For the next year she diligently did exercises at home, reassured that there had been no sign of a serious injury such as a fracture. When the pain flared periodically, “I just sort of ran through it,” she said. In April 2018 she ran the full 10-mile Cherry Blossom race and tried to ignore the tenderness, swelling and warmth that followed, then subsequently disappeared.

But by March 2019 her pain had intensified. Matacic worried that something had been overlooked. She returned to the orthopedist, who ordered more X-rays and scans. This time he told her she had Achilles tendonitis - pain and swelling often caused by overuse. Surgery, he told her, was an option. But first, he recommended PT.

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Downward spiral

In March 2020 Matacic was running up a hill near her Maryland home when she felt a painless gush of warm fluid in her ankle. She said she walked home and, determined to finish her workout, hopped on a stationary bike and “like an idiot” pedaled furiously for 15 minutes.

“I was in agony when I got off,” recalled Matacic, who could barely walk.

This time it took three weeks for the pain and swelling to subside. The orthopedist ordered a new MRI and concluded that loose ligaments in her ankle, cords of tissue that connect the foot and leg and provide stability, appeared to be the cause; the condition can occur after an injury. He recommended an operation to tighten ligaments.

Leery of elective surgery, especially during the early weeks of the pandemic, Matacic spent much of the next year in PT, which provided little to no relief.

By July 2021 a constant dull pain in her hip and intermittent ankle swelling had altered her gait and impaired her balance. Worried that she had a neurological problem as the family physician suggested years earlier, Matacic saw a neurologist. After an hour-long exam, he flatly ruled that out.

The next year was consumed by more false starts including a cortisone shot Matacic insisted on. Instead of alleviating discomfort, it caused intense pain and impaired her ability to walk for several weeks.

By then her life had shrunk. She was reluctant to make plans with friends, uncertain if her unpredictable ankle would rebel. She craved exercise but could no longer run or at times walk around her neighborhood. And she found it hard to stop worrying that she might never get better.

In December 2022 Matacic saw a second foot and ankle orthopedist who practices in Baltimore. In addition to loose ligaments, he determined she had Raynaud’s phenomenon, a common episodic condition caused by the constriction of blood vessels, which leaves fingers and toes numb and white. Raynaud’s is often triggered by cold or stress. Primary Raynaud’s has no known cause, is typically mild and requires no treatment. Secondary Raynaud’s, which tends to be more serious, often accompanies an autoimmune disease such as rheumatoid arthritis or lupus.

Before considering surgery, the orthopedist told her she needed to see a rheumatologist, a physician who specializes in autoimmune diseases that affect joints.

A few weeks before that appointment, Matacic spent Christmas with her parents. After numerous trips running up and down stairs in their Ohio home she awoke one morning to find her ankle looking “like a sausage” - massively swollen and intensely painful. She spent the next two weeks on crutches. The only upside, Matacic said, was that it convinced skeptical relatives “there really is something wrong with me.”

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A new approach

In January 2023 she hobbled into the Washington office of rheumatologist Adey Berhanu, clutching the inch-thick binder of medical records she had accumulated in the eight years since she rolled her ankle in the park.

Berhanu was the first doctor to listen to “every twist and turn in my miserable story,” Matacic said.

Based in part on her age, previous activity level, and the presence on an MRI of enthesitis, swelling where a tendon attaches to bone, the rheumatologist told Matacic she suspected she had psoriatic arthritis (PsA), a chronic autoimmune disease.

A combination of arthritis and the itchy skin disease psoriasis, psoriatic arthritis affects an estimated 1.5 million Americans, most of whom develop it between the ages of 30 and 50. Symptoms include joint pain with redness, warmth, fluid accumulation and swelling in the affected area. Irritated patches of skin indicative of psoriasis typically appear first, followed several years later by arthritic joint pain.

But a small percentage of patients, Matacic among them, do not develop psoriasis first, which can make the disease harder to diagnose, Berhanu noted.

The cause of PsA is unclear and probably reflects an interplay between environment and genetics. A mutation in genes that are part of the HLA complex, which help the immune system distinguish the body’s own genes from invading bacteria and viruses, appears to affect the risk of developing the disease. But a genetic marker is an indicator, not proof, of PsA, for which there is no definitive test.

Delayed diagnosis is not unusual, although eight years is uncommon. A 2021 study by researchers at the Mayo Clinic found that the median delay from the onset of symptoms to diagnosis was about 2½ years. Younger patients and those with enthesitis had longer delays. Early diagnosis is important because treatment with specialized medications can prevent permanent joint damage that can be disabling.

“I’ve never seen anyone so committed to doing the right thing,” Berhanu said of Matacic’s years of PT, which was a tip-off. “Sprains heal. An active person who can’t walk or drive raises your suspicion.”

“After four weeks in a boot, there should be an improvement,” she added, referring to the orthopedic walking boot often prescribed after an injury. “I meet patients who’ve been in a boot for a year and a half.”

Matacic said she was initially skeptical of the diagnosis because she didn’t want to have an incurable disease requiring a lifetime of medication. But the results of a genetic test that was positive for HLA-B27 were persuasive.

In the past year, medication has dramatically improved her ability to walk without pain. “I would kill if I could run again,” she said, although she suspects that is out of the question because of the stress running places on joints. She has taken up swimming instead.

Matacic says she wishes she’d taken her pain more seriously and consulted doctors much sooner. She said she feels lucky she hasn’t suffered joint damage despite the long diagnostic delay.

“I approached a lot of this as a test,” she said. “I was raised to believe that if you don’t push yourself you’ll just turn into a couch potato. But I think the biggest thing is to respect injuries.”

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