Long COVID could mean stomach pains. It could mean a cough, or fatigue. The condition has more than 200 possible symptoms.
It’s hard to diagnose. Doctors don’t always know.
“This (long COVID) can last a matter of weeks, months, years,” said Dr. Philip Heavner, chief medical officer at Guthrie Cortland Medical Center. “It’s a challenging diagnostic. It looks like other things.”
It’s a tougher call if the person doesn’t have a documented case of COVID-19.
Federal authorities estimate 11% of people who contract COVID will develop a long form of the illness. Nearly 13,700 Cortland residents had contracted COVID when the state stopped counting in May 2023. That suggests at least 1,500 Cortland County residents have had to cope with long COVID.
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“Essentially, it’s referred to as an ‘after virus infection,’” said Dr. Fei Wang, associate professor of population health sciences at Weill Cornell Medicine. “There are some either prolonged or new symptoms and signs. This notion of post virus syndrome is not unique to COVID, and it is uniformly poorly understood in the past as well.”
Long COVID, sometimes known as post-COVID conditions, is defined as signs, symptoms and conditions that continue or develop after acute COVID-19 infection, reports the U.S. Centers for Disease Control and Prevention.
Heavner said a diagnosis comes after a person has a confirmed case of COVID, followed by symptoms lasting more than four weeks.
However, Caitlin Farruggio, lead physical therapist for the pulmonary rehabilitation program at Upstate Medical University in Syracuse, used a figure of about 12 weeks after the point of infection.
“So, when we refer to long COVID – and even now, there’s still no clear and unique definition that can be used for clinical diagnostics about long COVID – but it is understood as either the exacerbated or prolonged or new symptoms and signs after the acute infection,” Wang said.
THE SYMPTOMS
Heavner said the most common long COVID symptoms are persistent fatigue and malaise, which impair daily activity and can make a person more easily exhausted.
“Their threshold to exercise or exert themselves has lowered, and it takes a lot less to be exhausted,” Farruggio said. “Maybe they have a good day going out running errands, then the next few days they’re almost bedbound and can’t do anything.”
Common symptoms include, but are not limited to:
•Fatigue.
•Fever.
•Difficulty breathing or shortness of breath.
•Cough.
•Chest pain.
•Heart palpitations.
•Brain fog, such as difficulty thinking or concentrating.
The CDC warns that some symptoms can be hard to explain and manage, or may not show in testing. Some symptoms are also known to resolve, and then come back.
Farrugio said post-COVID syndrome has more than 200 possible symptoms.
“It’s evolving because of the nature of how the virus is infecting the human body and how the different organs react to the virus infection,” Wang said. “We just see all kinds of symptoms and signs all over different organ systems across the human body.”
Experts have noticed a link between initial COVID virus severity and the severity of long COVID symptoms.
“Some of them (symptoms) are fairly mild, like dizziness or fatigue,” Wang said. “Sometimes there’s pains, like stomach pains, but there is this common sense that the long COVID and how severe it is, is relatively associated with how severe the patient is during the acute phase.”
“Physicians are reluctant to assign that to the patient unless they are really certain that it’s really something caused by COVID,” Wang said. “People who have those long COVID diagnoses tend to be more severe.”
PREVALENCE
A 2022 survey of more than 27,000 people found that 6.9% of adults said they had long COVID at some point, reports the National Center for Health Statistics. However, a CDC study found that incidents of long COVID dropped from 18.9% in June 2022 to 11% in January 2023.
“The challenge of this problem is that we don’t have a uniform definition, strict definition of long COVID,” Wang said. “When you talk about travelers or incidents, this is going to be super difficult because you don’t even have a definition. That’s why you see from all these reports and publications, the percentage sometimes varies a lot.”
“It’s definitely something there – it is not zero, but it depends on how you define long COVID and how severe the symptoms and signs,” Wang added.
In her experience, Farruggio said the number of long COVID patients peaked in 2020 and 2021.
While researchers are working to better understand who long COVID affects, the CDC reports that some studies have shown increased likelihood of the disease in the following populations:
•People who have experienced more severe COVID-19, especially those who were hospitalized or needed intensive care.
•People who had underlying health conditions before COVID-19.
•People who did not get a COVID-19 vaccine.
No single test or scan detects long-COVID, Heavner said. It comes down to a diagnosis of exclusion, a declaration that rests on clinical grounds.
RECOVERY
Recovering can be complicated, Wang said. Different symptoms can require different treatments, and sometimes, patients are still healing from damage incurred during the initial virus.
“Because we don’t understand the mechanism yet, we can’t really say if this is going to be something that goes along with you throughout your life or if you can recover in a certain time period. It really might,” Wang said. “What I’m trying to say is this really varies person by person.”
“For example, we do see some reports of people who got pretty severe conditions that may not be cured over the entire of this person’s life, but it is really the organ damage caused during the acute phase,” Wang added.
Rehabbing patients can need different specialists – physical therapists, occupational therapists, speech therapists, Farruggio said.
“There have been neurologists and cardiologists seeing people with these issues, trying to put pieces of the puzzle together,” she said.
For example, Farruggio said, patients with brain fog work with speech therapists to relearn finding the words they want, concentrating and strategies to get them through daily life until they recover.
Farruggio said patients with stubborn shortness of breath and fatigue would benefit most from Upstate’s pulmonary rehab program.
“It’s about educating that you can’t push yourself, you may not be able to get the point of feeling like you worked hard,” Farruggio said, adding that overexerting yourself before you heal fully can prolong that healing process.
If you think you have long COVID, preparing for the doctor’s appointment will be important, reports the CDC. Before the appointment, prepare:
•A list of your current and previous medical providers, conditions and medicines or treatments.
•A brief history that summarizes your experience with COVID-19 and post-COVID conditions, including known dates or time periods.
•A list of concerns to discuss with your medical provider.
“If there is anything uncertain, it’s better to consult professionals rather than doing an online search and trying to figure it out by yourself,” Wang said.
