Worried you may have long COVID? Here are the top 12 symptoms

A new study that includes research from the University of Arizona identifies 12 of the most common symptoms of long COVID, a health problem that has affected up to one-third of U.S. adults who have had COVID-19.

The research, published Thursday in the prominent Journal of the American Medical Association, identifies 12 symptoms that most set apart those with long COVID from those without it. The study also establishes a scoring system based on the symptoms.

"It's the first step to define, to come up with a research definition of long COVID that you can actually operationalize," said Dr. Sairam Parthasarathy, a professor in the University of Arizona College of Medicine - Tucson and a co-author of the study. "I can actually give people a survey, ask them to check off the boxes and then I can do a point system. We do that for a lot of medical conditions. ... We have a similar score for patients with pneumonia to decide whether they should be treated in the hospital or if we should send them home."

Long COVID refers to symptoms that are either new or got a lot worse at least four weeks after a COVID-19 infection. Long COVID is of high concern to the health system as it can affect multiple tissues and organs of the body and leave people unable to work or enjoy regular daily activities.

In addition to the University of Arizona, several health care organizations and schools were involved in the study, among them Massachusetts General Hospital in Boston, Harvard Medical School, Boston, Massachusetts, the University of Colorado's Anschutz Medical Campus in Aurora and Brigham and Women’s Hospital in Boston.

'People are absolutely exhausted after doing minimal activity'

The researchers studied nearly 10,000 Americans, including about 750 Arizonans from across the state, and the people they studied included those both with and without long COVID, Parthasarathy said.

The 12 most common COVID-19 symptoms they identified are: post-exertional malaise; fatigue; brain fog; dizziness; gastrointestinal symptoms; heart palpitations; issues with sexual desire or capacity; loss of smell or taste; thirst; chronic cough; chest pain; and abnormal movements.

In patients with long COVID there appears to be something that happens to the nervous system that controls muscles, which explains how abnormal movements may happen. It's also why some long COVID patients have post-exertional malaise, Parthasarathy said.

"Post-exertional malaise is when people are absolutely exhausted after doing minimal activity. There's an aggravation of the fatigue by minimal activity. These are people who do a minimal amount of activity and then they have to take a one hour long nap to recover from it."

The scoring system may help with future diagnoses, said Parthasarathy, who is a co-principal investigator for the RECOVER study, which is a National Institutes of Health initiative aimed at learning about the long-term effects of COVID-19. For example, the loss of smell or taste is so strongly associated with long COVID that with just that symptom a patient would have the diagnosis under the model proposed in the study. Other symptoms like dizziness and abnormal movements have lower scores.

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"Then you add it all up and if they make it to eight or above you can say you definitely have long COVID," he said.

Patients and researchers have identified more than 200 symptoms associated with long COVID, and researchers in the JAMA study identified at least 30.

People who have long COVID may be suffering from symptoms that are not on the list of the 12 cited in the study, Parthasarathy emphasized. The top 12 the researchers found in a mathematical model stuck out "like sore thumbs" but people with long COVID may have corollary symptoms, such as dry mouth, weakness, headaches, tremor, muscle and abdominal pain, fever/sweats/chills, and sleep disturbance, the researchers found.

"This is a good start so that we can use this as the basis for future research to identify what are the things that cause long COVID, what are the things that can treat it," Parthasarathy said. "More research needs to be done to further refine and polish this definition using clinical diagnostic tests and research tools. Such additional work will help us better understand why an individual develops long COVID and how we can better treat them.”

Survey: Arizonans suffer from long COVID symptoms at a higher rate than the US average

Parthasarathy noted that Arizonans as of last summer were suffering long COVID symptoms at a rate that was about three percentage points higher than the national average, likely in part due to lower-than-average uptake of the COVID-19 vaccine. People who are unvaccinated are at higher risk for severe COVID-19, and people with severe COVID-19 are more likely to get long COVID, he said.

"People who are not vaccinated are more likely to get long COVID as compared to a vaccinated individual who ends up having a breakthrough infection," Parthasarathy said. "That's exactly what the study shows. In the pre-omicron as well as the omicron era, we find that people who are vaccinated are less likely to get long COVID whereas people who are unvaccinated are more likely to get long COVID."

Some people who have had long COVID are no longer reporting symptoms, yet the prevalence of the condition in people who are currently experiencing symptoms indicates long COVID is nearly as common as diabetes or asthma. As of July 2022, long COVID symptoms were affecting about 6% to 7% of U.S. adults, and about 9.5% of Arizona adults, said Parthasarathy, citing data from a survey conducted by the Centers for Disease Control and Prevention last summer.

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The researchers would like to use their findings to look for biomarkers of long COVID. Researchers would like to develop blood tests and also find treatments that work for people with long COVID, and developing the diagnosis tool is the first step, Parthasarathy said.

"There are some people who got a score of 30. They had all of the symptoms," he said. "Not only does it help you see who has long COVID but it also tells you who is carrying the burden of long COVID."

Reach health care reporter Stephanie Innes at Stephanie.Innes@gannett.com or at 602-444-8369. Follow her on Twitter @stephanieinnes.