What We Know About 'Post-COVID Syndrome' and Lingering Symptoms

Some people survived COVID-19, only to struggle with lingering symptoms months after recovery. Here's what doctors say about this syndrome.

In March 2020, Diana Berrent woke up with a fever and "felt like an elephant was sitting on [her] chest." An international photographer and mom of two living in a New York City suburb, Berrent found out she had a moderate case of COVID-19. "I was sick for a couple of weeks but recovered at home with Tylenol and Gatorade," said Berrent.

Berrent later founded Survivor Corps, a social media-based group of patients determined to improve their health, educate the public, and aid the scientific community in efforts to better understand COVID-19. The group's Facebook page has grown to include thousands of members, many of whom came to the group to discuss the symptoms they had been having long after they "recovered" from COVID-19.

Complaints from the group included a prolonged loss of taste and smell, "COVID toes," and hair loss as well as more serious issues such as mini strokes and new-onset diabetes. Additionally, more than 1,500 COVID-19 "long-haulers" responded to a July 2020 survey conducted by an Indiana University School of Medicine professor and Survivor Corps. Some reported lingering respiratory and cardiovascular trouble, but they concluded that joint pain, rashes, muscle aches, dizziness, confusion, vision changes, depression, and anxiety were also relatively common.

Long-lasting fatigue, muscle and body aches, and difficulty concentrating or focusing seemed to be especially widespread among those who had COVID-19. This constellation of symptoms, which some dubbed "post-COVID syndrome," had been likened to chronic fatigue syndrome (CFS). However, most people who have developed it following COVID-19 have not met the diagnostic criteria for CFS.

The Struggle With Lingering Health Issues From COVID-19

Berrent is among those who felt fine for a while but started having health problems post-COVID. Berrent mentioned that she developed middle ear pain, headaches, nausea, and blurry vision. "As a photographer for the past 12 years, I'm keenly aware of my eyesight," said Berrent. "I went to my son's lacrosse game and could not figure out which player he was."

In certain cases, patients said their early symptoms from COVID-19 never fully resolved. Yet, in many others, patients thought they recovered only to later experience a resurgence of symptoms—or develop brand-new symptoms that they believed were linked to COVID-19.

The Centers for Disease Control (CDC) identified these symptoms as being part of post-COVID conditions. These are health complications that occur or remain at least four or more weeks after an individual has contracted COVID-19. Post-COVID conditions include numerous issues, such as:

  • Breathing difficulties
  • Dizziness
  • Brain fog
  • Heart palpations
  • Mood changes
  • Tiredness
  • Cough
  • Sleep problems

Ann Parker, MD, an assistant professor in the Division of Pulmonary and Critical Care Medicine at Johns Hopkins University in Maryland, who studies post-critical care recovery, said it wasn't unusual for people who battled any kind of serious infection to feel weak and fatigued for months afterward. Cognitive issues and mental health issues akin to PTSD (post-traumatic stress disorder) were also common, especially among people who were so sick that they spent time in the ICU.

"I think folks are looking for the [persistent] aspect of this disease, and there may be one," Dr. Parker told Health. "But at six months [into the pandemic in the US] we [were] just at the point of learning whether people infected in February [2020] even [had] long-lasting symptoms."

Rebecca Keith, MD, co-director of the Respiratory Recovery Clinic at National Jewish Health in Denver, noted that it wasn't just those who were severely ill at first having problems months later. "Some patients were never admitted to the ICU or even hospitalized," said Dr. Keith.

Ruby Engel, a Westchester, New York resident who spent a few months in Colorado visiting Keith's clinic, had an extremely mild case of COVID-19 in March 2020. "Ninety-nine percent of my colds are worse," Engel told Health. Engel had also had bouts of breathlessness, palpitations, and chest pain. She was later diagnosed with cardiomyopathy (weakening of the heart muscle), also called broken heart syndrome. Engel had also experienced flare-ups of asthma and reflux, ailments she had pre-COVID but were well under control. "It's almost like this virus reactivated previous health problems," said Engel.

That is completely possible, Dr. Keith believed: "Say you had a chronic cough for years related to nasal drainage or reflux and it was controlled. If COVID-19 exacerbated your upper airway sensitivity, we may need to go back and treat those underlying problems again. We have to step back and look at the whole patient."

Dr. Parker agreed that people who had COVID-19 and became sick again later did not need to be ignored. "Any symptoms that patients are experiencing are real symptoms that need to be addressed," said Dr. Parker. Unfortunately, that's not always happening, Berrent lamented. "It's a huge problem, especially for women. Some are being gaslit by their doctors; they're being diagnosed with anxiety when they actually have tachycardia," said Berrent.

What Doctors Know About Post-COVID

Healthcare providers have been gaining more knowledge about the post-COVID symptoms of long-haulers. With a meta-analysis published in April 2022 in The Journal of Infectious Diseases, literature revealed that on a global scale, approximately 200 million patients ended up with prolonged complications following COVID-19 illness. Of those patients, 49% were experiencing those complications four months later. Further, as of April 2022, the CDC has noted that people of all ages—including children and adolescents—can experience post-COVID conditions.

In 2020, Reynold Panettieri, MD, professor of medicine at the Rutgers Robert Wood Johnson Medical School in New Jersey, estimated that about 10% of COVID-19 patients would develop a chronic issue. The researchers for an October 2021 study published on JAMA Network found that approximately 54% of individuals experienced post-COVID symptoms six months after having COVID-19.

Some long-haulers were extremely sick or had an underlying condition like diabetes or obesity before getting COVID-19, but these conditions have not applied to everyone. "I've seen trained athletes who are experiencing profound fatigue and exhaustion with exercise," said Dr. Panettieri. "We don't fully understand why. They've been devastated."

Dr. Panettieri explained that persistent physical challenges often go hand-in-hand with emotional stress. "Post-illness, people can become depressed, and the isolation and social distancing doesn't help that," said Dr. Panettieri. Fortunately, the CDC has offered ways to support COVID-19 long-haulers, like being compassionate toward their situation and utilizing resources from their How Right Now campaign to connect with those individuals.

The other good news is that many long-haulers will not have COVID-related problems for the rest of their lives. "Every patient is a snowflake, but in aggregate most people who have this [post-COVID] syndrome appear to be improving," said Dr. Panettieri, who added that many of his patients who were very ill were able to return to their normal level of functioning within three or four months.

Dr. Keith was also relatively optimistic: "We've seen chronic cough, breathlessness, cardiovascular complications, and lung disease, and we have seen these kinds of abnormalities even three to six months out [from the initial infection]. But most of these patients are slowly getting better."

Still, many are concerned that those who haven't shared their experience aren't taking the potential aftermath seriously enough—which means they might be more cavalier about protective measures such as wearing masks and practicing social distancing.

"A lot of people think if you weren't on a respirator and hospitalized, you're fine," said Engel. "Surviving doesn't always equal recovery."

The information in this story is accurate as of press time. However, as the situation surrounding COVID-19 continues to evolve, it's possible that some data have changed since publication. While Health is trying to keep our stories as up-to-date as possible, we also encourage readers to stay informed on news and recommendations for their own communities by using the CDC, WHO, and their local public health department as resources.

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