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New Yorker Lyss Stern came down with COVID-19 at the beginning of the pandemic, in March 2020. She ran a 103-degree fever for 5 days straight and was bedridden for several weeks. Yet symptoms such as a persistent headache and tinnitus, or ringing in her ears, lingered.
"Four months later, I still couldn't walk four blocks without becoming winded," says Stern, 48. Five months after her diagnosis, her doctors finally gave a name to her condition: long COVID.
Long COVID is known by many different names: long-haul COVID, post-acute COVID-19, or even chronic COVID. It's a general term used to describe the range of ongoing health problems people can have after their infection.
The most recent data from the CDC has found that one in 13 adults in the United States — 7.5% — have symptoms that last at least 3 months after they first came down with the virus. Another earlier report found that one in five COVID-19 survivors between the ages of 18 and 64, and one in four survivors aged at least 65, have a health condition that may be related to their previous bout with the virus.
Unfortunately, there's no easy way to screen for long COVID.
"There's no definite laboratory test to give us a diagnosis," says Daniel Sterman, MD, director of the Division of Pulmonary, Critical Care and Sleep Medicine at NYU Langone Health in New York City. "We're also still working on a definition, since there's a whole slew of symptoms associated with the condition."
It's a challenge that Stern is personally acquainted with after she bounced from doctor to doctor for several months before she found her way to the Center for Post-COVID Care at Mount Sinai Hospital in New York City. "It was a relief to have an official diagnosis, even if it didn't bring immediate answers," she says.
What to Look For
Many people who become infected with COVID-19 get symptoms that linger for 2 to 3 weeks after their infection has cleared, says Brittany Baloun, a certified nurse practitioner at the Cleveland Clinic. "It's not unusual to feel some residual shortness of breath or heart palpitations, especially if you are exerting yourself," she says. "The acute phase of COVID itself can last for up to 14 days. But if it's been 30 days since you came down with the virus, and your symptoms are still there and not improving, it indicates some level of long COVID."
More than 200 symptoms can be linked to long COVID. But perhaps the one that stands out the most is constant fatigue that interferes with daily life.
"We often hear that these patients can't fold the laundry or take a short walk with their dog without feeling exhausted," Baloun says.
This exhaustion may get worse after patients exercise or do something mentally taxing, a condition known as post-exertional malaise.
"It can be crushing fatigue; I may clean my room for an hour and talk to a friend, and the next day feel like I can't get out of bed," says Allison Guy, 36, who was diagnosed with COVID in February 2021. She's now a long COVID advocate in Washington, DC.
Other symptoms can be divided into different categories, which include:
Shortness of breath
Neurologic symptoms. One of the most common ones is brain fog. says Andrew Schamess, MD, a professor of internal medicine at Ohio State Wexner Medical Center, who runs its Post-COVID Recovery Program. "Patients describe feeling 'fuzzy' or 'spacey,' and often report that they are forgetful or have memory problems," he says. Others include:
Sleep problems. One 2022 study from the Cleveland Clinic found that more than 40% of patients with long COVID reported sleep disturbances.
Dizziness when standing
Changes in smell or taste
Depression or anxiety
You could also have digestive symptoms such as diarrhea or stomach pain. Other symptoms include joint or muscle pain, rashes, or changes in menstrual cycles.
Risk of Having Other Health Conditions
People who have had COVID-19, particularly a severe case, may be more at risk of getting other health conditions, such as:
Pulmonary embolism, or a blood clot in the lung
Myocarditis, an inflamed heart
While it's hard to say precisely whether these conditions were caused by COVID, they are most likely linked to it, says Schamess. A March 2022 study published in The Lancet Diabetes & Endocrinology, for example, found that people who had recovered from COVID-19 had a 40% higher risk of being diagnosed with type 2 diabetes over the next year.
"We don't know for sure that infection with COVID-19 triggered someone's diabetes — it may have been that they already had risk factors and the virus pushed them over the edge," he says.
COVID-19 itself may also worsen conditions you already have, such as asthma, sleep apnea, or fibromyalgia. "We see patients with previously mild asthma who come in constantly coughing and wheezing, for example," says Schamess. "They usually respond well once we start aggressive treatment." That might include a continuous positive airway pressure, or CPAP, setup to help treat sleep apnea, or gabapentin to treat fibromyalgia symptoms.
Is It Long COVID or Something Else?
Long COVID can cause a long list of symptoms, and they can easily mean other ailments. That's one reason why if your symptoms last for more than a month, it's important to see a doctor, Baloun says. They can run a wide variety of tests to check for other conditions, such as a thyroid disorder or vitamin deficiency, that could be confused for long COVID.
They should also run blood tests such as D-dimer. This helps rule out a pulmonary embolism, which can be a complication of COVID-19 and also cause symptoms that may mimic long COVID, such as breathlessness and anxiety. They will also run tests to look for inflammation, Baloun says.
"These tests can't provide definitive answers, but they can help provide clues as to what's causing symptoms and whether they are related to long COVID," she says.
What's just as important, says Schamess, is a careful medical history. This can help pinpoint exactly when symptoms started, when they worsened, and whether anything else could have triggered them.
"I saw a patient recently who presented with symptoms of brain fog, memory loss, fatigue, headache, and sleep disturbance 5 months after she had COVID-19," says Schamess. "After we talked, we realized that her symptoms were due to a fainting spell a couple of months earlier where she whacked her head very hard. She didn't have long COVID — she had a concussion. But I wouldn't have picked that up if I had just run a whole battery of tests."
Stern agrees. "If you have long COVID, you may come across doctors who dismiss your symptoms, especially if your workups don't show an obvious problem," she says. "But you know your body. If it still seems like something is wrong, then you need to continue to push until you find answers."
Lyss Stern, 48, long COVID advocate, New York City.
Daniel Sterman, MD, director, Division of Pulmonary, Critical Care and Sleep Medicine, NYU Langone Health, New York City.
Brittany Baloun, certified nurse practitioner; intake coordinator, ReCOVer Clinic, Cleveland Clinic, Cleveland, Ohio.
Allison Guy, 36, long COVID advocate, Washington, DC.
Andrew Schamess, MD, professor of internal medicine, Ohio State Wexner Medical Center.
CDC: "Long COVID or Post-COVID Conditions," "Nearly One in Five American Adults Who Have Had COVID-19 Still Have "Long COVID."
Morbidity and Mortality Weekly Report: "Post-COVID Conditions Among Adult COVID-19 Survivors Aged 18-64 and > 65 Years — United States, March 2020-November 2021."
The Lancet: "Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact."
Sleep: "Sleep Disturbances in Post-Acute Sequelae of COVID-19."
The Lancet Diabetes & Endocrinology: "Risks and Burdens of Incident Diabetes in Long COVID: A Cohort Study."
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Cite this: Does Your Patient Have Long COVID? Some Clues on What to Look for - Medscape - Jul 20, 2022.