As we approach three years into the coronavirus pandemic, things look very different from a few years ago. We have a vaccine, bivalent boosters, COVID treatments and more understanding of the highly contagious virus.
But a more unexplored area is now also part of the equation: the long COVID, which is a debilitating result of a COVID-19 infection, affects millions of people around the world.
There is no specific definition for this condition. Instead, long COVID is more of an “umbrella term that describes (the) variety of physical and mental health effects that persist after initial COVID infection,” Dr. Aaron said. Friedberg, clinical co-lead of the post-COVID recovery program at Wexner Medical Center at Ohio State University.
The Centers for Disease Control and Prevention defines long COVID as symptoms that persist four weeks after infection; the World Health Organization says the time frame is 12 weeks. The definition “kind of depends on who you’re talking to,” Friedberg said, making diagnosis, recognition and treatment difficult. And the fact that long COVID symptoms vary widely from person to person also makes it difficult.
Symptoms can be present in many different body systems, said Sara Gorman, CEO of Critica, an organization that fights scientific misinformation. “So there could be respiratory symptoms, there could be cardiovascular symptoms, gastrointestinal symptoms, cognitive and neurological symptoms as well as mental health symptoms,” she said.
By some definitions, 200 symptoms can be characterized as part of long COVID. “I I think that’s why it can be so difficult for primary care professionals caring for patients, because it can look so different from person to person,” Friedberg added.
Researchers and doctors are struggling to understand it and treat those who have it. However, the first step in any treatment plan is to recognize that you are dealing with a long COVID infection.
Here are the most common symptoms.
According to Gorman, the most common symptom is fatigue — and it’s not some sort of exhaustion that can be remedied with a nap or an earlier bedtime.
“It is kind of an overwhelming feeling of not being able to move very well, of not having the energy to do anything,” Gorman said. “And there can be that post-exercise crash that happens if you push yourself a little too much. This can happen when you force yourself to exercise or when you do something that seems minor, like spending a morning running errands.
For people dealing with this type of fatigue, Gorman said, too much effort one day can lead to days when they are unable to do much.
Rapid heartbeat and chest discomfort
Friedberg said many people with long-lasting COVID also report rapid heart rate and chest pain or discomfort. According to Johns Hopkins Medicine, a rapid heart rate may also feel like an irregular heartbeat, or you may notice other physical symptoms, such as dizziness, as a result.
Another common symptom of long COVID is headaches, Friedberg said.
Studies show that it is not a one-off headache, but a persistent headache that keeps happening. This can vary in severity, depending on the person.
Gorman said some people don’t like the term “brain fog,” but this cognitive symptom is another sign of a long COVID. That means struggling to pay attention, being forgetful and not being as cognitively sharp as usual, she said.
“And a lot of people struggle with work because they feel like their cognition is really impaired,” Gorman added.
Shortness of breath
Another commonly reported symptom is shortness of breath, according to Friedberg. A person experiencing this issue may have difficulty climbing stairs and may not be able to resume their pre-COVID exercise routine.
“There’s also a small segment (of patients) who also have stomach issues,” said Dr. William Lago, medical director of the Cleveland Clinic’s Recovery Clinic for longtime COVID patients. “We’ve seen many who have the persistent diarrhea that can sometimes accompany a COVID infection.”
The CDC notes that stomach pain is another symptom associated with long COVID.
Mental health symptoms
Mental health disorders, such as depression and anxiety, are common symptoms of long COVID. Several studies published over the past three years found that people infected with COVID-19 were more likely to have mental health problems. Specifically, research published in the British Medical Journal found that people with COVID were 35% more likely to develop anxiety and 40% more likely to suffer from depression.
Additionally, a 2020 study published in the medical journal The Lancet found that within three months of becoming ill, 20% of people infected with COVID also received a first diagnosis of a psychiatric illness.
Some people may have only one symptom; others may have several.
“The majority of people we see coming to our clinic have multiple symptoms, and they tend to be quite prevalent,” Lago said.
In other words, if you have two very different symptoms on this list — like diarrhea and chest discomfort — that’s still potentially a sign of long COVID. But you can also have just one of the conditions above and still be dealing with long COVID.
The long COVID can be different in different populations.
“It’s actually interesting, there was a study that came out recently that said there are different forms of long COVID that are more common in different groups of people,” according to Gorman.
Men are more likely to have cardiovascular symptoms (like chest pain or a racing heart) while women are more likely to have neurological symptoms (like brain fog), she said. Additionally, women are more likely overall to have long COVID symptoms, according to a study published in August in the Journal of Women’s Health.
Additionally, there are also different symptoms across racial and ethnic groups, she said.
“A lot of black people who have long COVID are not…recognized or diagnosed,” Gorman said. But when black people are diagnosed, they show fewer cognitive symptoms than white people, for example.
If you are concerned that you have a long COVID, consult your doctor.
At this point, there is no single treatment for long COVID, but “there are therapeutic agents that are in various stages of clinical trials,” Gorman said. For example, researchers are working to determine if Paxlovid is useful for long-lasting COVID conditions, while other trials are looking for treatments for common symptoms like brain fog and fatigue.
And a lot patients find success going to doctors who treat prevalent symptoms, Freidberg said. But it’s important to understand that not all doctors are prepared to deal with the long COVID. If you find that your doctor is dismissive or refuses to give you the help you need, you should find someone else for your treatment.
“(You) should be able to get validation and support from (your) healthcare team,” Freidberg said. “I think having a close relationship with a good doctor or primary care provider is really important in this setting.”
If you think you have long COVID, you should first consult your GP, who can help you determine if it is long COVID or another illness.
If you find that your primary care physician is not validating or helping you feel better, check to see if there is a long-term COVID treatment clinic in your area. There are a number of such treatment centers across the country, according to Freidberg.
Survivor Corps, a long-running COVID advocacy group, has a database of treatment centers you can use to find a doctor near you.
Although there are unknowns, there is a lot of research being done.
Gorman said it’s easy to feel pessimistic about long COVID, but there are some really good things happening in research. Moreover, “there is good evidence that people are recovering,” Gorman said.
“Overall long COVID rates have dropped recently, in part because some people have reported that their symptoms have disappeared,” she added. Many people worry about having long COVID forever, but that’s not necessarily the case.
That said, it’s also important to be careful. Anyone can develop long COVID, even after their second or third COVID infection. You don’t know how your body will react to chronic illness.
Freidberg said some of his patients have been battling long COVID for years, which is frustrating and isolating. If you have long COVID, Freidberg emphasized that you are not alone; there are “millions of people around the world who suffer from these same symptoms”.
Know that people are working to solve it. The National Institutes of Health has been given $1 billion to invest in lengthy COVID research, and medical professionals and researchers are also scrambling to understand the disease.
“I think there’s a real action-oriented path in the medical and scientific community around long COVID, and there’s definitely a good will to do something about it,” Gorman said.
Experts are still learning about COVID-19. The information in this story is what was known or available at the time of publication, but advice may change as scientists discover more about the virus. Please consult the Centers for Disease Control and Prevention for the most current recommendations.