Long and winding road
What happens after you "recover" from Covid-19? Doctors and patients reveal
"I never expected this."
Shana*, a critical care nurse in Pennsylvania, went for a 8.5-mile run two days before she tested positive for Covid-19. She was running as many as 20 miles per week before she came down with the illness that has now sickened more than 1.61 million in the United States.
Shana’s case was “mild” as far as Covid-19 cases go — some patients end up on ventilators, others die. Yet, six weeks after she last tested positive, she still doesn’t feel anything close to normal.
Shana tells Inverse she’s been battling consistent fevers and muscle aches ever since the first, and most severe, symptoms subsided.
“I go through periods of hope mixed with periods of despair. I want to be able to run again and have the energy to do physical activity, but my body isn't letting me,” she says. "I never expected this.”
As the wave of severe Covid-19 patients tentatively flattens, patients and doctors alike are turning their attention to a new set of patient experiences. People like Shana, who have relatively mild coronavirus cases, are taking weeks if not months to recover.
People want to know what is happening to their bodies, but the answers are unclear, says Reynold Panettieri, the science director of Rutgers Institute for Translational Medicine and Science.
It’s perhaps a small comfort, but these people now have scientists’ attention. The biggest question facing researchers right now is whether these long-term symptoms are part of the recovery process or actually part of the disease itself.
"We weren’t focused on the end-game convalescence, and frankly no one was convalescing,” Panettieri tells Inverse. “Now we’re seeing a substantial number of people that are moving to the convalescent phase. What’s manifesting are these prolonged symptoms and syndromes.”
What does it feel like to recover from Covid-19? – It can take a while to feel normal after a viral infection. After the flu, for example, cough and “malaise” can persist for more than two weeks after other symptoms subside, according to the CDC.
However, Panettieri says that protracted recovery times from coronavirus “seem to be inordinately long for the extent of the disease.” Perhaps even longer than doctors expected.
At first, doctors told Tony*, a 32-year-old from Massachusetts, that his condition would persist between 10 and 14 days. (Tony has a presumed case of Covid-19 due to his symptoms; a PCR test done one-third of the way through his 70-day struggle with the illness came back negative).
"I never expected the tail end of the recovery to drag on like this."
For the first 10 days of his illness, Tony's symptoms, including fatigue, fever, and a cough, slowly increased. Then, for a month, his condition greatly worsened.
“Simple household tasks would wipe me out and I'd need to collapse on the couch or in bed,” he tells Inverse. “Mentally, it became difficult to focus on things, and I was a very unmotivated person. I found fun in nothing anymore.”
Now, on day 70, he says he feels 70 percent better. But he is surprised at how long he’s felt low. Tony expected to experience flu-like symptoms for two to three weeks. The reality was different.
“I never expected the tail end of the recovery to drag on like this,” he says.
Panettieri says that lingering fatigue matches up with what he is seeing in a cohort of 750 healthcare workers that he has been following since April 7.
He has had conversations with people under 50 who were otherwise healthy before coronavirus and were not members of high-risk groups, like people with many underlying health conditions or the elderly. Some patients, some of whom are athletes, no longer feel well enough to run, he says. Others report shortness of breath, fatigue, and general malaise.
Michael Head is a senior research fellow at the University of Southampton. He tells Inverse he’s seen reports of these symptoms, too, and that he doesn’t anticipate these reports slowing down.
“We can expect to see a lot of that as a short-to-medium-term consequence [of coronavirus],” he says.
Why does recovery drag on? – The short answer is that scientists don’t know how long it really takes to feel normal after coronavirus, Head says. Some people feel fine after a few days, but others had long, tumultuous roads to recovery.
It’s not totally out of the ordinary to see a virus lay someone out for a long time, even if they are totally healthy, says Head. For instance, some coronavirus patients end up with pneumonia, an inflammation of the lungs that is a result of viral infection.
Though pneumonia is typically a more severe consequence, it has also been cataloged in mild to moderate cases of coronavirus. Of the 44,672 coronavirus cases found in China in early February, about 80 percent were mild-to-moderate, a definition that included mild pneumonia.
“People taking weeks to recover from a pneumonia-like thing is common,” Head says.
Panettieri also suggests that the time it takes to clear a pneumonia infection could be responsible for prolonged recovery times and fatigue. “One wonders if the lack of clearing of pneumonia, or the time it takes to completely clear pneumonia, generates the symptoms of not feeling well,” he says.
To complicate things, not all coronavirus patients actually develop pneumonia.
Fatigue can also be a neurological consequence, says Head, which means there’s something upsetting the nervous system that makes people exhausted.
Reporting from The Guardian also suggests that Covid-19 patients may be experiencing some kind of chronic fatigue syndrome — persistent exhaustion that doesn’t go away with bed rest. A 2011 study of patients who recovered from SARS also experienced persistent weakness, fatigue, abnormal sleep, and in some cases, depression, suggesting coronaviruses can come with these long-term syndromes tacked on to the tail-end of recovery.
This protracted recovery time could also simply be the side effect of the body fighting off the virus. The body has just had to mount innumerable defenses to take on Covid-19, says Panettieri: “Some of the symptoms of fatigue, tiredness, listlessness is a survival mechanism of the body to enhance repair,” he suggests.
For doctors, it’s not clear if any of these proposed explanations are really the whole story. That’s not easy to hear when you’re feeling awful for 70 days, Tony observes.
“It's a novel virus, so I was told along the way by several doctors that everyone was basically guessing,” says Tony.
When will there be answers? – The big issue with Covid-19 is that every patient is “virtually a snowflake,” says Panettieri. They’re all unique, which makes it hard to tell fact from anecdote.
To that end, Panettieri mentions it could even be possible that healthy people who feel severely impacted by Covid-19 recovery may simply be more aware of changes to their bodies. Maybe they notice a loss of function more so than a less healthy person would.
With that said, these symptoms seem to be present in enough people to warrant further attention.
Because of the heterogeneity of patient experience, scientists have to do large studies that follow people for prolonged periods of time. Those studies typically take time, effort, and money, Panettieri adds, but there are some projects in the works that will do that. (One of them is his own study of those 750 healthcare workers.)
Until those studies are done, the answers to the many questions patients have — and, in many ways, their lives — are on hold. Shana got married in October and is eager to start a family. But because of the uncertainty of how the virus affects pregnant women, she’s put that plan on pause, too.
As a critical care nurse, she understands that resources need to be focused on saving lives but hopes that, as the curve flattens, scientists can attend to questions like hers: When will feeling so awful be over?
“I hope, in time, the focus also switches to patients like me that have mild to moderate symptoms and are having a longer recovery,” she says.
*Surnames withheld at source's request.