They can't concentrate at work. They get out of breath crossing the street. They suffer from dizziness, insomnia, confusion, a racing heart or a host of other lasting effects that keep them from getting back to their normal lives.
Now, a new study of 1,733 hospitalized coronavirus patients, published in the journal The Lancet, offers an early look at just how prevalent and long-lasting the condition may be: 3 out of 4 COVID-19 patients still suffered from at least one symptom six months later.
The most common symptom at six months was fatigue and muscle weakness, cited by 63 percent of patients, followed by sleep difficulties (26 percent), and anxiety and depression (23 percent). More than a quarter of the subjects had diminished lung function.
Though continuing symptoms from COVID-19 affect the young and old alike, age does seem to play a role. The Lancet study found that the likelihood of a patient's reporting fatigue or muscle weakness rose 17 percent for each 10-year increase in age.
"Because COVID-19 is such a new disease, we are only beginning to understand some of its long-term effects on patients’ health,” said study author Bin Cao, M.D., director of respiratory and critical care medicine at the China-Japan Friendship Hospital in Beijing. “Our analysis indicates that most patients continue to live with at least some of the effects of the virus after leaving hospital and highlights a need for post-discharge care, particularly for those who experience severe infections."
Even patients with mild cases are affected
The Lancet study looked only at patients who were hospitalized. The vast majority, however, did not need a ventilator or spend time in the intensive care unit (ICU), meaning they weren't the most severe cases.
These were the most common symptoms reported by hospitalized COVID-19 patients six months after discharge:
- Fatigue/muscle weakness – 63 percent
- Sleep difficulties – 26 percent
- Anxiety/depression – 23 percent
- Hair loss – 22 percent
- Smell disorder – 11 percent
- Heart palpitations – 9 percent
- Joint pain – 9 percent
- Taste disorder – 7 percent
- Dizziness – 6 percent
Research shows that any patients who enter an ICU — not just those with COVID-19 — are at risk of long-term effects, including diminished lung capacity, sleep problems, cognitive deficits, anxiety and depression. In fact, many hospitals have “post-ICU recovery clinics” dedicated to helping those patients.
At first, that's what doctors thought they were seeing in COVID-19 patients. But they soon realized that those who had only mild cases of the disease (and were never hospitalized) were also reporting long-term symptoms, said Christian Sandrock, M.D., an infectious disease and pulmonary critical care specialist at the University of California, Davis.
"They got COVID, felt crummy at home but were never hospitalized,” he said. “Yet they never fully got better, or new symptoms developed. That subgroup is a good chunk of my patients.”
Consider the case of 63-year-old Marina Oshana, a patient of Sandrock's. A retired philosophy professor in Davis, California, Oshana picked up what she thought was a nasty bug in February 2020 that turned out to be COVID-19.
She remembers feeling exhausted for a few weeks, running a low-grade fever and enduring a “horrific” cough, but symptoms never got so bad that she thought she needed to go to the hospital.
Eleven months later, though, she is still battling fatigue, heart palpitations and a blood oxygen level that sometimes drops to dangerous levels.
"I can be standing in my kitchen chopping onions and, suddenly, my heart will speed up to 126 beats per minute — that's scary,” she said. “Before, I was an active person. I worked out five or six days a week. Now I have to really dial it back. It's frustrating not to be able to do what I did before.”
Several possible causes
Scientists don't know for sure the mechanism behind the continuing symptoms. It could be the coronavirus itself, the result of inflammation from the virus, or an autoimmune defense.
Many doctors, including Sandrock, believe it's related to the coronavirus's ability to invade blood vessel cells and cause irregularity in flow and clotting, blocking tiny blood vessels and reducing blood flow to the brain, heart and lungs.
Researchers are also investigating if the novel coronavirus is triggering chronic fatigue syndrome, also called myalgic encephalomyelitis. Symptoms include fatigue, sleep problems, a greatly reduced ability to do normal activities, and problems with thinking and memory.
After a similar coronavirus, called SARS, circulated in 2003, researchers found that 40 percent of SARS survivors had chronic fatigue symptoms more than three years after infection.
Fatigue is by far the most common symptom mentioned by COVID-19 long haulers.
Doctors who work with survivors say they see it firsthand. Some patients are too exhausted to go back to work, or they struggle to get out of bed. Others report feeling winded when they do only a fraction of their previous activity.
"Maybe they can walk around the house, but going up a flight of steps is difficult,” said Alba Azola, M.D., a rehabilitation physician who works with post-COVID-19 patients at Johns Hopkins Medicine. “I have a patient who has little kids, and she just feels like she can't keep up with them."
Outpatient physical therapy, breathing exercises and rehabilitation can help, Azola said. Johns Hopkins has a series of exercises specifically designed for COVID-19 survivors.
When it comes to resuming physical activity, it's important to start slowly, cautioned Siddharth Singh, M.D., a cardiologist at Cedars-Sinai Medical Center in Los Angeles. If you have dizziness, chest pain or shortness of breath with exertion, ask your doctor about getting a heart and lung screening, he advised.
In one study, researchers looked at MRIs and found heart inflammation in 60 percent of patients who had recovered from severe COVID-19. “In COVID patients, that does predict who is going to be at higher risk of heart events” such as stroke or cardiac arrest, Singh said. “We have athletes who can't wait to get back to exertion. We encourage them to slowly build up exercise capacity."
Studies show that sleep disturbance is a common issue for critically ill patients (not just those with COVID-19) for up to 12 months after they are discharged from the hospital, but that the problem generally improves over time.
Among COVID-19 survivors, sleep-wake disturbances are not limited to those who were hospitalized, noted Rachel Salas, M.D., a sleep neurologist at Johns Hopkins Medicine.
Some patients who had only a mild COVID-19 illness still have trouble falling asleep months later. Others wake up multiple times during the night. It's unclear how much of the insomnia is related to the general anxiety and social isolation caused by the pandemic and how much is physiological.
If you're having trouble sleeping after COVID-19, it's important to talk with your medical provider to make sure there's no underlying cause, such as sleep apnea, Salas said. If not, she suggests seeing a sleep specialist, who can create a customized plan. This may include cognitive behavioral therapy, light therapy, the sleep hormone melatonin or other medications.
Almost a quarter of patients in the Lancet study reported anxiety or depression at the six-month mark.
Participants with more severe illness were more likely to report anxiety or depression than those with a milder course of disease, the study authors said. Psychological symptoms were also more common in women.
The findings correlate to another study of COVID-19 patients, published in November in The Lancet Psychiatry journal. It found that about 1 in 5 patients received any psychiatric diagnosis, including anxiety, depression or insomnia, within 90 days of infection. That's about twice as likely as for other patients experiencing different health events during the same period, the researchers said.
If you think you are experiencing depression or anxiety after COVID-19, it's important to reach out to a medical provider for an evaluation, Azola said.
Cognitive problems and other unusual symptoms
Other symptoms at six months researchers conducting the Lancet study identified include hair loss (22 percent), smell disorder (11 percent), taste disorder (7 percent), heart palpitations (9 percent), joint pain (9 percent), dizziness (6 percent) and chest pain (5 percent).
The study didn't assess the cognitive function of patients after six months, but other studies and doctors confirm that many post-COVID-19 patients experience memory problems, difficulty concentrating and a type of “brain fog” that makes it difficult to perform ordinary activities.
"Memory is impaired. Concentration is impaired,” Azola said. “Some people have word-finding difficulties. It can be significant. I had a research nurse in our clinic who had to create a system of checklists to check on herself because her memory was not as reliable as before.”
Speech language therapy and neuropsychology help those patients, she said.
Experts encourage COVID-19 patients experiencing continuing symptoms to seek care from a medical provider. Many U.S. hospitals have set up special clinics for survivors and have already learned a lot about the best ways to help.
"We can come up with strategies and give you the tools to overcome your symptoms,” Azola said.