Millions of people who have had COVID-19 find themselves suffering from a host of debilitating symptoms that can persist for weeks or even months after their initial coronavirus infection fades.
This phenomenon, dubbed long COVID, has puzzled experts since near the start of the pandemic. And while research is starting to come up with some answers, Greg Vanichkachorn with Mayo Clinic says, “we don’t really have [long COVID] nailed down yet.” A big reason is because “it looks like more and more symptoms can be associated with this condition,” says Vanichkachorn, M.D., an occupational and aerospace medicine specialist and medical director of Mayo Clinic’s COVID Activity Rehabilitation Program.
In fact, the list of the most commonly reported long COVID symptoms maintained by the Centers for Disease Control and Prevention (CDC) includes nearly 20, ranging from neurological complications to digestive disorders. Some studies have uncovered more than 50 long-term effects of COVID-19, adding issues such as hair loss and vision loss to the mix. Others estimate that number is much higher — closer to 200.
Still, some of these symptoms seem to be more prevalent. Fatigue is the most common complaint that Vanichkachorn sees among his long COVID patients. “And that’s often coupled with some breathing problems, either coughing or shortness of breath,” he adds. Almost equal to that are patients coming in with neurological issues — headaches, tingling or numbness in the arms and legs, ringing in the ears, changes in their vision, “as well as a lot of trouble with thinking,” Vanichkachorn says.
Research conducted by AARP reveals a similar lineup when it comes to adults 50 and older who have battled lingering effects of COVID-19. Fatigue (57 percent), cough (34 percent) and cognitive problems like brain fog (31 percent) topped the list among a nationally represented sample that was surveyed. Shortness of breath (26 percent) and difficulty concentrating (25 percent) round out the top five.
Most Common Long COVID Symptoms
People with long COVID can experience a range of symptoms. Here are the most commonly reported, according to the Centers for Disease Control and Prevention:
- Tiredness or fatigue that interferes with daily life
- Symptoms that get worse after physical or mental effort
- Difficulty breathing or shortness of breath
- Chest pain
- Fast-beating or pounding heart (heart palpitations)
- Difficulty thinking or concentrating (“brain fog”)
- Sleep problems
- Dizziness or lightheadedness when you stand up
- Pins-and-needles feelings
- Change in smell or taste
- Depression or anxiety
- Stomach pain
- Joint or muscle pain
- Changes in menstrual cycles
The symptoms, however, are only “half the picture,” Vanichkachorn says. “The other half is how those symptoms really have changed a person’s ability to live their normal lives.”
A handful of viruses can cause prolonged illness (experts call this post-acute sequelae), and recovery can be especially difficult for people who required hospitalization or intensive care. But what’s different about long COVID is that it seems to be more widespread, and the symptoms that people experience, even when they no longer test positive for coronavirus, seem to be more robust, Vanichkachorn says. “We’ve had patients complain of fatigue after a viral infection before … but patients after coronavirus infection, they really have some profound fatigue.”
For some, this means routine tasks such as getting dressed or taking a shower require assistance. Others have trouble completing everyday errands like grocery shopping or doing the laundry due to their symptoms — “and of course, going to work,” Vanichkachorn adds. AARP’s research found that one-third of adults 50 and older who had lingering COVID-related symptoms said their job was impacted in some way.
Priya Duggal, a professor in the Department of Epidemiology at Johns Hopkins Bloomberg School of Public Health, estimates that 3 to 5 percent of people who have had COVID-19 “feel they cannot normally function in everyday life” due to lasting symptoms. “If we think this could even be 1 percent, it would affect 800,000 people, given that 80 million have had a COVID-19 infection in the United States,” she said in a recent media briefing. That number is now closer to 83 million, the latest tallies show.
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It’s still not clear who is at greatest risk for these more acute cases of long COVID-19, Duggal said. “Definitely people who already had mobility issues or who are older, and those who are hospitalized are at risk. But we’re also seeing younger people, and those that were healthy before their infections, and those who had mild infections,” she added.
When it comes to long COVID, more broadly — which is thought to impact up to one-third of people who have had a coronavirus infection — a few folks may be more at risk than others, though Duggal emphasizes “no one gets a free pass.” People who had underlying health conditions before their infection may be more likely to develop long COVID, the CDC says.
Research also finds that more women report long COVID symptoms than men, and it tends to be more prevalent in middle-aged adults. And while some studies have found that vaccinated individuals who get a breakthrough infection may be less likely to develop long COVID than their unvaccinated peers, research is still ongoing.
Talk to your doctor early if you experience symptoms
Lots of questions surrounding long COVID are still unanswered, but one thing is certain: Experts say if you had COVID-19 and notice any new or prolonged symptoms three or four weeks out from your infection, talk to your primary care physician. Don’t wait months before calling for an appointment, Vanichkachorn says. If you don’t have a primary care provider, seek care from an internist, Duggal adds.
Talking to your doctor about long COVID
Tips for patients on preparing for an appointment
- Seeing a new doctor? Prepare a list of your current and past health-care providers and your current and past medical conditions.
- Before your visit, jot down a brief summary of your experience with COVID-19 and any new or ongoing symptoms. Be sure to include: When they started, how they affect your life, how often they occur, and what makes them worse.
- Bring a list of your current medications. Don’t forget over-the-counter drugs and supplements.
- Ask questions during your appointment.
- Take notes and make sure you understand the next steps before you leave your appointment. You can also ask for a summary of your appointment.
That’s because some people are able to fully recover from long COVID, Vanichkachorn says, and “those patients, at least in our patient population, tend to get care earlier.” AARP research, however, found that less than half of the adults surveyed saw their healthcare provider to address their ongoing COVID-related symptoms.
The care early on for many patients can be done in the home — “things like concentrating on the diet, hydration, optimizing sleep,” Vanichkachorn says. If you need more specialized treatment, you may be referred to a multidisciplinary long COVID clinic; nearly every state has at least one now.
It’s also important for people with chronic health conditions like high blood pressure or diabetes to reach out to their doctor if they notice a change in their numbers after recovering from COVID-19, says Sabyasachi Sen, M.D., professor of medicine at the George Washington University School of Medicine and Health Sciences. It could signal a long-term effect from the infection.
The CDC has tips for patients on how to plan for an appointment to discuss long COVID. The agency recommends preparing a list of your current and past medical conditions in advance and writing down your experience with COVID-19 and any new or lingering conditions. Be sure to include when these symptoms started, what makes them worse, and how they affect your day-to-day life.
There is no “magic bullet” treatment for the condition yet, Vanichkachorn says. Right now, a lot of it comes down to managing individual symptoms and providing supportive care. That said, with all the research going on, “there’s nothing to say that we won’t have a cure for this, a much more rapid treatment in the next coming months, as we research this more,” he adds.
In the meantime, Vanichkachorn says people experiencing long COVID symptoms need to continue to self-advocate and seek care from their providers. “And they shouldn’t lose hope, because I do think things are going to get better as we go forward.”
Rachel Nania writes about health care and health policy for AARP. Previously she was a reporter and editor for WTOP Radio in Washington, D.C. A recipient of a Gracie Award and a regional Edward R. Murrow Award, she also participated in a dementia fellowship with the National Press Foundation.