The long haul
For some people, an active COVID-19 infection is only the beginning of a winding road back to ‘normal’
When the COVID-19 pandemic exploded in spring 2020, Amy Crnecki was diligently masking, social distancing, and washing her hands. The 38-year-old Prior Lake teacher—who says she’s always been a bit of a germophobe—spent as much time as possible outdoors with her unmasked pupils at their nature preschool.
Still, Crnecki was diagnosed with COVID in November of that year. What she didn’t know was that the initial illness—which, though grueling, never necessitated hospitalization—was just the beginning of her health woes.
Her ensuing battle with “long COVID” would prove to be a months-long ordeal with a heavy toll on her body, mind, ability to work, and capacity to care for her family.
“For a few days, I had allergy-like symptoms,” she recalls. “Then my legs started feeling like they weighed a thousand pounds. I lost my sense of taste and smell. I got out of breath doing regular [household] tasks, got random chest pains, random headaches. And the ‘brain fog’ … I’d just forget words midsentence. [Long COVID] took over every system in my body.
“It knocked me to my knees.”
Thankfully, one of Crnecki’s doctors had just learned about the new M Health Fairview Adult Post-COVID Clinic, established in December. Providers at the clinic helped Crnecki launch a full-court press to bring her lungs, heart, and brain back to normal.
After six months of cardiac rehab, pulmonary rehab, and occupational therapy (OT), many of Crnecki’s symptoms have receded. Others have been mitigated. She and her doctors are still working to restore the health she enjoyed pre-COVID.
Among her doctors is M Health Fairview internist Tanya Melnik, M.D., who began seeing COVID patients at the pandemic’s outset. She quickly noticed that some patients weren’t getting better. Some had seemingly mild cases of COVID and were never hospitalized; others had endured long hospitalizations and needed oxygen supplementation.
“I had these patients telling me, ‘I’m not better; I don’t know what’s wrong with me.’ We were puzzled,” says Melnik, who’s also an assistant professor in the University of Minnesota Medical School.
Quest for answers
Researchers haven’t even settled on a clear definition of long COVID, but typically, “long haulers” have symptoms that persist (or begin) about a month after diagnosis, or a month after release from the hospital if they were admitted.
Many, like Crnecki, shared some of the same lingering or new symptoms: fatigue, headache, shortness of breath, “brain fog.” Loss of taste and smell showed up frequently, taking weeks or months to resolve. Depression, anxiety, gastrointestinal problems, and skin, hair, and nail changes were common, too.
Sarah Wittenberg, 44, was diagnosed with a seemingly mild case of COVID in early December. Eight months later, she’s struggling with postural orthostatic tachycardia syndrome (POTS), a nervous system impairment that inhibits blood flow.
Along with lingering brain fog that has greatly diminished her ability to function, the previously fit and active Wittenberg experiences frightening pulse spikes along with surprisingly low blood pressure. She’s still on workers’ compensation.
“I almost have to grieve the loss of who I was,” Wittenberg says. “I can’t help my kids with their homework. I can’t go hiking with them. I can’t remember things clearly; I’m not processing information.”
Wittenberg is grateful to M Health Fairview physiatrist Farha Ikramuddin, M.D., M.H.A., and others at the clinic for helping her work steadily toward health. She recently “graduated” from cardiac rehab after months of arduous effort and is continuing with OT. Her therapy regimen continues to yield progress, but she’s a long way from normal.
“I’m alive and I’m thankful for that, don’t get me wrong,” Wittenberg says. “But my whole life has changed.”
A recent New England Journal of Medicine article projects more than 15 million long COVID cases in the U.S., most affecting patients of working age. The numbers portend a cataclysm of disability.
Symptoms, common and confusing
While some symptoms of long COVID are more common, the particular cluster of symptoms a patient might experience varies widely. Many patients also experience rare, more baffling symptoms.
Leslie Morse, D.O., who leads the Medical School’s Department of Rehabilitative Medicine, has a patient who is a former and would-be runner who now breaks out in a severe rash every time he breaks a sweat. Ikramuddin, an assistant professor in that department, has one patient who experiences phantom smells and another who spikes a fever twice a day every day for no discernible reason.
Another developed concussion symptoms … decades after suffering a concussion. That’s one example, Ikramuddin says, of a pattern she’s noticed: Some patients had a past condition that was essentially dormant before COVID that the virus has somehow activated.
“What was sitting quietly in the background—asthma, a [previously unknown] heart condition—is now unleashed,” she says.
“We know that there’s a lot we don’t know,” Morse adds. “Maybe the single biggest thing we’ve learned is that this is really unpredictable.”
It’s also undeniably real, and Morse and her colleagues make a point of emphasizing that when seeing a new long hauler.
Crnecki’s relief, when Melnik delivered that message to her in their first meeting, was immense. “I just sobbed the whole time. That’s when I started giving myself space to say, ‘This is not in my head, it’s happening.’”
Crnecki realized returning to her job wasn’t possible in the near term; instead, she would focus all the energy she could muster on reclaiming her physical and mental capacity. She also has worked with her therapist to manage resurgent anxiety and newly diagnosed depression.
Attending to mental health is imperative for long haulers, says Melnik. “We already knew COVID can trigger anxiety and depression,” she says. “Now they have to accept that their [health] is far from normal, and there’s no proven treatment, and returning to normal is going to take a lot of work. Nothing can really prepare you for this.”
A role for rehabilitation
Unlike many long COVID clinics, the M Health Fairview Adult Post-COVID Clinic sees some patients who never tested positive for COVID but show symptoms nonetheless. (COVID antibody tests can occasionally give false negatives—especially if administered too soon or too long after the infection.) There’s a program for children facing symptoms of long COVID, too.
Some data has suggested that COVID vaccination may help mitigate symptoms for long haulers. The evidence is far from clear, but physicians strongly advise vaccination to prevent reinfection. (Both Crnecki and Wittenberg got the vaccine at their earliest opportunity.)
With so much still unknown, the clinic team is focusing on easing patients back into exercise and starting other treatments as soon as possible.
“Neurocognitive evaluation, physical therapy, occupational therapy, pulmonary rehab, a neuropsych assessment—these are all things I think can really make a difference,” Morse says. “I see a tremendous role for rehabilitation in these patients.”
Wittenberg agrees. “I can’t wait for the day when I can just do some normal activity without gasping for air. I wouldn’t wish this on anyone.”
Long COVID: Who's most at risk?
Why some people develop long COVID remains a mystery—one that University of Minnesota researchers are working furiously to solve, as they also seek therapies to help post-COVID patients regain their previous quality of life. Of the 22,000 patients in the U’s COVID database, about 5,000, or roughly 23 percent, show post-COVID symptoms weeks after diagnosis, says Leslie Morse, D.O., who leads the Medical School’s Department of Rehabilitative Medicine.
Obesity seems to increase one’s risk for long COVID, and women appear slightly more susceptible than men. Other risk factors aren’t yet known. Age and severity of initial illness do not appear to clearly predict the likelihood of developing long-term effects.