So much of the COVID-19 news coming out of the United States lately has been positive. Cases are falling, hospitalizations are down, and the vaccines are holding up well against emerging coronavirus variants.
But that good news can sometimes obscure the fact that many Americans continue to struggle with COVID-related symptoms. And while most people get better within weeks of getting infected, some don’t.
Estimates vary, but one survey found that one in five people are still grappling with long-haul COVID (formally known as Post-Acute Sequelae of SARS-CoV-2 or PASC) about five weeks after their initial infection. An estimated one in seven people are still struggling with symptoms three months after the fact. A recent JAMA review found that more than 70% of people who had COVID-19 were still experiencing at least one persistent symptom 60 days later.
Given that there have been more than 33 million known cases of COVID-19 in the United States, that likely means that millions of Americans are struggling with long-haul COVID, or have at some point over the past year.
“This is a novel, once-in-100-year viral pandemic, and we’re having novel post-viral symptoms emerging as a result,” David Putrino, director for rehabilitation innovation for Mount Sinai Health System in New York City, told HuffPost.
So what exactly are people with long-haul COVID experiencing? Here’s a quick rundown of some of the most common symptoms experts are tracking, studying and treating right now.
One of the most common complaints of those living with long-haul COVID is profound fatigue. People report feeling run down while attempting even the simplest tasks, and say their overall energy levels are low.
Many people specifically report struggling with “post-exertional malaise” (basically, feeling wiped out after exertion), and it’s not exclusive to doing something physical.
“Anything that makes you have to work is making people feel pretty exhausted and spent afterwards,” said Putrino, who studies long-haul COVID. He added that even getting on a Zoom call can leave people reeling after.
Why people feel so rundown isn’t entirely clear, as experts are still studying what causes long-haul COVID and the reasons are likely complex. One theory is that antibodies produced after infection may target the autonomic nervous system, which regulates bodily functions people don’t actually think about (like heart rate, body temperature and digestion).
COVID-19 might “throw your autonomic nervous system off-balance,” Putrino said. That could contribute to the overwhelming fatigue many people experience, as the body is confused and working very hard.
Cognitive symptoms are another top complaint of people with long-haul COVID.
“Informally, this is known as ‘brain fog,’” Putrino said. “It’s more of a broad umbrella term that describes people who are having problems with short-term memory, executive function, holding concentration, making decisions, finding the right word when they’re trying to communicate. We’re seeing broad subsets of cognitive issues that are emerging.”
Shortness of breath or chest pain
COVID-19 is a respiratory virus, so it’s no surprise that many long haulers struggle with difficulty breathing, coughing and chest pain months after their initial infection.
Physical tasks that were not difficult pre-infection — like climbing stairs — lead many people with long-haul COVID to experience exhaustion and difficulty breathing. That said, breathing exercises and respiratory therapy have been shown to help.
Heart palpitations and elevated heart rate
Heart palpitations — a fast-beating or pounding heart — are among the most common long-haul COVID symptoms, according to the Centers for Disease Control and Prevention.
Experts are increasingly aware of the ways in which COVID-19 can impact cardiac function. One small study suggested that up to 60% of COVID-19 survivors experienced inflammation of the heart after contracting the infection.
Loss of smell or taste
Loss of taste and smell is often one of the first symptoms people experience with COVID-19, and that issue may linger for many.
“For about a quarter of people with COVID-19 who have one or both of these symptoms, the problem resolves in a couple of weeks,” according to Johns Hopkins. “But for most, these symptoms persist.”
Estimates also suggest, however, that up to 80% of those people experience an improvement in their ability to taste or smell within a year.
Depression and anxiety
Many patients with long-haul COVID experience poor mental health long after being sick. Research suggests that up to one-third of people with COVID-19 were diagnosed with a mental health or neurological condition within six months of their initial coronavirus diagnosis.
Studies have not established clear cause-and-effect, nor is it entirely understood how long-haul COVID and mental health conditions are linked. It could be that the stress and pain of dealing with symptoms over time takes a toll on people’s emotional well-being.
How doctors are helping long-haul COVID patients
The common symptoms listed here are by no means the only ones people experience. Putrino said he’s seen more than 60 different symptoms among his long-haul COVID patients; some experience a range of symptoms while others experience just one.
The good news is that health care providers and public health officials are taking long-haul COVID very seriously, and centers specifically aimed at treating and studying the condition have cropped up around the country.
“Multi-year studies are underway to further investigate post-COVID conditions,” according to the CDC. “These studies will help us better understand post-COVID conditions and understand how to treat patients with these longer-term effects.”
But getting patients the kind of care and support they need is difficult, particularly given how wide-ranging the symptoms can be and how relatively new this all remains.
“It’s extremely challenging. The average medical model in the U.S. is: come in with symptoms, get a test, the test confirms something is wrong and you get prescribed a medication or a therapy. With these sorts of symptoms that we’re seeing, we really need to turn that traditional medical model on its head,” Putrino said. “We need to think about patient-related outcomes to understand how people are feeling.”
If you think you’re experiencing symptoms of long-haul COVID, talk to your doctor. Even people who were asymptomatic or had very mild COVID-19 can develop long-haul symptoms.
“People can have long COVID and have no positive PCR test in their medical history. They can have no antibodies in their medical history. This is possible, we now know this,” Putrino said. “Clinicians should not turn patients away based on their testing status.”
Experts are still learning about COVID-19. The information in this story is what was known or available as of publication, but guidance can change as scientists discover more about the virus. Please check the Centers for Disease Control and Prevention for the most updated recommendations.