COVID ‘Long Haulers’: Long-Term Effects of COVID-19
What happens when COVID-19 symptoms don’t go away? In some people who recover from COVID-19, lingering health problems can wreak havoc for months.
Tae Chung, M.D., a specialist in neurology and physical medicine and rehabilitation; Megan Hosey, Ph.D., an expert in rehabilitation psychology,; Arun Venkatesan, M.D., Ph.D., a specialist in neurology; Amanda Morrow, M.D., an expert in pediatric rehabilitation medicine; and Emily Brigham, M.D., M.P.H., who specializes in lung disease and critical care, discuss long-term COVID-19, what symptoms are most common and what those affected by them can expect.
Long COVID: What is post-COVID syndrome?
Mild or moderate COVID-19 lasts about two weeks for most people. But others experience lingering health problems even when they have recovered from the acute phase of the illness.
In such patients, there is no longer live coronavirus running amok in the body. If tested, the person would test negative for the coronavirus, but they might be severely debilitated nonetheless.
The problem has several names. The National Institutes of Health refer to long-term COVID-19 symptoms as PASC, which stands for post-acute sequelae of SARS-CoV-2. More common terms are post-COVID syndrome, long COVID or long-term COVID. People living with post-COVID syndrome are sometimes known as “long haulers.”
What causes post-COVID syndrome?
While it’s clear that people with certain risk factors (including high blood pressure, smoking, diabetes, obesity and other conditions) are more likely to have a serious bout of COVID-19, there isn’t a clear link between these risk factors and long-term problems. In fact, long COVID can happen in people who have mild symptoms.
More studies will shed light on why these stubborn health problems persist in some people. They could be due to organ damage, a persistent inflammatory or autoimmune response or another reason.
What causes symptoms in long haulers?
SARS-CoV-2 can attack the body in a range of ways, causing damage to the lungs, heart, nervous system, kidneys, liver and other organs. Mental health problems can arise from grief and loss, unresolved pain or fatigue, or from post-traumatic stress disorder (PTSD) after treatment in the intensive care unit (ICU).
Brigham says, “We're seeing a spectrum of symptoms after acute COVID-19, some of which would be expected after other critical illnesses. Some are minor, but other people may need continuing care and even readmission to the hospital.” She notes that similar, lingering problems can affect patients with other serious illnesses.
But what’s curious is that it seems post-COVID-19 syndrome is not just afflicting people who were very sick with the coronavirus. “Patients who were never severely ill are coming to clinic and saying that their lives are different now,” Brigham says.
What are the long-term effects of coronavirus infection?
According to the CDC, the most common lasting symptoms are fatigue, shortness of breath, cough, joint pain and chest pain. Other issues include cognitive problems, difficulty concentrating, depression, muscle pain, headache, rapid heartbeat and intermittent fever.
Breathing issues after COVID-19
A bad case of COVID-19 can produce scarring and other permanent problems in the lungs, but even mild infections can cause persistent shortness of breath — getting winded easily after even light exertion.
Lung recovery after COVID-19 is possible, but takes time. Experts say it can take months for a person’s lung function to return to pre-COVID-19 levels. Breathing exercises and respiratory therapy can help.
Heart problems after COVID-19
SARS-CoV-2 infection can leave some people with heart problems, including inflammation of the heart muscle. In fact, one study showed that 60% of people who recovered from COVID-19 had signs of ongoing heart inflammation, which could lead to the common symptoms of shortness of breath, palpitations and rapid heartbeat. This inflammation appeared even in those who had had a mild case of COVID-19 and who had no medical issues before they got sick.
Kidney damage from COVID-19
If the coronavirus infection caused kidney damage, this can raise the risk of long-term kidney disease and the need for dialysis.
Lost or distorted senses of smell and taste after COVID-19
The senses of smell and taste are related, and because the coronavirus can affect cells in the nose, having COVID-19 can result in altered or lost senses of smell or taste. Before and after people become ill with COVID-19, they might lose their sense of smell or taste entirely, or find that familiar things smell or taste bad, strange or different.
For about a quarter of people with COVID-19 who have one or both of these symptoms, the problem resolves in a couple of weeks. But for most, these symptoms persist. Though not life-threatening, prolonged distortion of these senses can be devastating and can lead to lack of appetite, anxiety and depression. Some studies suggest that there’s a 60% to 80% chance that these people will see improvement in their sense of smell within a year.
Neurologic Problems in Long COVID
Neurologist Arun Venkatesan, M.D., Ph.D., says, “Some individuals develop medium to long-term symptoms following COVID infection, including brain fog, fatigue, headaches and dizziness. The cause of these symptoms is unclear but is an active area of investigation.”
Autonomic nervous system symptoms after COVID-19
Postural orthostatic tachycardia syndrome, or POTS, is a condition that affects blood circulation, and people who have survived COVID-19 may be more vulnerable to it. Tae Chung, M.D., who specializes in physical medicine and rehabilitation, says “POTS can leave survivors with other neurologic symptoms, including continuing headache, fatigue, brain fog, difficulties in thinking or concentrating, and insomnia.
Even in patients without POTS, persistent post-COVID-19 insomnia, or “COVID-somnia” is an increasingly common complaint among COVID-19 survivors.
Mental health issues after COVID-19
After surviving COVID-19, some people are left with lingering anxiety, depression and other mental health issues. Physical changes such as pain and weakness can be complicated by long periods of isolation, stress from job loss and financial difficulties, and grief from the deaths of loved ones and the loss of good health.
Patients who were hospitalized have a particularly challenging recovery. Brigham says “Post-intensive care syndrome, or PICS, puts COVID-19 survivors and other people who have spent time in the ICU at a higher risk for problems with mental health, cognition and physical recovery.”
Megan Hosey, Ph.D., a rehabilitation psychologist, says that prolonged time in the ICU can cause delirium. The strange surroundings, multiple mind-altering medications, isolation and loss of control can leave patients with lasting and recurrent sensations of terror or dread, including post-traumatic stress disorder (PTSD).
“Many patients have hallucinations where they believe that medical providers are trying to harm them,” Hosey says. “We've had patients tell us things like ‘I thought I was being buried alive’ when they were being put into an MRI.”
Diabetes after COVID-19
The relationship between COVID-19 and diabetes, especially type 2 diabetes, is complex. Type 2 diabetes is a risk factor for serious cases of COVID-19, and some survivors of the illness seem to be developing type 2 diabetes signs after they recover from COVID-19.
Long-hauler coronavirus symptoms in children and teens
It’s not yet known whether children who have had COVID-19 are more or less likely than adults to experience continuing symptoms. But long-term COVID-19 in children is a possibility, showing up as fatigue, depression, shortness of breath and other long-hauler symptoms.
Amanda Morrow, M.D., a specialist in physical medicine and rehabilitation, is part of the multidisciplinary team at Kennedy Krieger Institute’s Pediatric Post COVID-19 Rehabilitation Clinic, which addresses lingering coronavirus symptoms in children and teens. She says it isn't clear why long COVID-19 symptoms affect some children and not others.
“We are seeing patients who are often very high-functioning, healthy children who did not have any previous illnesses or medical conditions,” she says, noting that many of the kids being treated at the clinic only had mild bouts of COVID-19.
Heart inflammation after COVID-19 is a concern, especially among young athletes returning to their sports after a mild or even asymptomatic case of the coronavirus. They should be screened for any signs of heart damage to ensure it is safe for them to resume activity.
Kids who have experienced the (thankfully) very rare complication of COVID-19 called multisystem inflammatory syndrome in children, or MIS-C, can be left with serious heart damage, and should be followed by a pediatric cardiologist.
Long-term COVID-19 problems challenge health care, too
Brigham says that the sheer scale of caring for patients with lingering COVID-19 symptoms is a serious challenge. She notes that clinicians saw post-viral symptoms in patients affected by two other coronavirus diseases — severe acute respiratory syndrome (SARS) and Middle East respiratory syndrome (MERS).
But, she says, outbreaks of those diseases were limited. Millions more people have had COVID-19 than SARS or MERS, so the potential problem of lingering health problems is huge, particularly in the context of the pandemic, with isolation, economic disadvantage, lack of access and changed daily routines further compounding the complexities of long-term COVID-19 care.
How long can long-term COVID-19 last?
When it comes to COVID-19, how long is “long-term”? The answer is unknown. Though it seems like a very long time since the pandemic began, COVID-19 only began spreading widely in early 2020, and the vast majority of people who have had the disease are only a year or less into their recovery.
It will take longer to understand what is next for patients who have recovered from COVID-19 and who still have resulting health problems.
What is the treatment for long COVID-19?
Doctors and therapists can work with you to address symptoms. The Johns Hopkins Post-Acute COVID-19 Team (JH PACT) is a special multidisciplinary clinic to support the recovery of people who have had COVID-19, and similar clinics are emerging at other hospitals.
Breathing exercises, physical therapy, medications and other treatments can help improve your health, but be prepared for a gradual recovery.
How do I prevent long-term COVID-19?
The best way to avoid post-COVID-19 complications is to prevent infection with the coronavirus in the first place. Practicing coronavirus precautions and getting a COVID-19 vaccine as soon as it is available to you are effective ways to avoid getting COVID-19.
Understanding the seriousness of COVID-19 and its potential for long-term, debilitating symptoms is good motivation for protecting yourself and others by wearing a face mask consistently and properly whenever you are around people from outside your household; maintaining physical distance of at least six feet from people outside of your household; and practicing careful hand hygiene.
When should I see a doctor about post-COVID-19 symptoms?
Long-term COVID-19 symptoms can be similar to signs of other disease, so it is important to see your doctor and rule out other problems, such as cardiac issues or lung disease.
Don’t ignore loss of smell, depression, anxiety or insomnia, or write these off as unimportant or “all in your head.” Any symptom that interferes with your daily life is worth a call to your doctor, who can help you address these problems and improve the quality of your life.
If you experience new chest pain, difficulty breathing, bluish lips or any other sign of a life-threatening problem, call 911 or emergency services right away.
More information will emerge on long-term COVID-19
SARS-CoV-2, the virus that causes COVID-19, was identified in December 2019. There is still a lot to learn about it, but our understanding of the virus and COVID-19 is evolving by the day.
Researchers will learn more about how and why the coronavirus affects different people in such a variety of ways, and why some people experience no symptoms at all while others have life-threatening organ damage or lasting disability. New insights will provide avenues for therapies and hope for people living with long-term COVID-19 effects.
What you need to know from Johns Hopkins Medicine.