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What is long COVID?
Some people who get COVID-19 have long-term symptoms after their illness. This condition has been called long COVID, long-haul COVID, post COVID, or in medical language, post-acute sequelae SARS-CoV-2 infection (PASC).
Symptoms of long COVID usually start several weeks after the initial illness and can continue for weeks, months, or even longer. They can be relatively mild or so severe that you can’t work or do normal activities. The severity of your symptoms may also change over time. Some people say they come in waves—and you might even start to feel better but then have a relapse.
Some of the most common long COVID symptoms are fatigue, heart palpitations, cough, shortness of breath, difficulty concentrating (“brain fog”), headaches, sleep disturbances, joint pain, tingling/numbness (“pins and needles sensation”), changes in taste and smell, menstrual cycle changes, anxiety, and depression.
Anywhere from 10–33% of people who had COVID then get long COVID. People who had severe illness are the most likely to have the condition. But people who had mild or even no COVID symptoms at first can still develop long COVID. Research suggests that women are twice as likely as men to have long COVID.
There is a lot of misinformation out there. This is not surprising since it is a new disease that we are all still learning about. That being said, trust your doctor. They are doing their best to stay up-to-date on the studies. —Dr. Chandra Manuelpillai
What causes long COVID?
There are still many questions surrounding long COVID and why it happens. Experts are not sure if long COVID symptoms are due to an active infection that won’t go away, post-infectious complications, or the effects of a dormant (inactive) virus.
But COVID-19 is not the only virus that has long-term symptoms. Viruses like Zika, Ebola, and SARS-CoV-2 (aka post-SARS syndrome) can also cause persistent (long-lasting) symptoms. This can also happen after having more common diseases, such as pneumonia or bronchitis (also known as post-viral inflammation), chronic Lyme disease, and chicken pox (varicella), which causes shingles.
One theory is that it’s because of an autoimmune response, which is when your body mistakenly attacks its own tissues and cells. This leads to chronic inflammation and damage. An extreme example of this is multisystem inflammatory response or MIS-C, which has occurred in children (in adults, it’s less common). It can target any organ, but particularly the lungs, heart, kidneys, gastrointestinal tract, eyes, and skin.
Long-term effects of COVID
Some people fighting a COVID-19 infection continue to have symptoms after they are mostly recovered from the illness. This can also happen after other viruses like the flu or pneumonia, with some symptoms lasting longer than usual.
Some people recover from the illness but then develop puzzling new symptoms. These may linger for weeks to months.
COVID affects multiple organ systems in the body so there can be many long-term effects. Patients usually have different combinations of symptoms. These symptoms may include:
Cognitive and neurological
- Brain fog (difficulty thinking or concentrating)
- Dizziness or feeling lightheaded when standing
- Change in smell or taste
- Pins-and-needles sensations
- Difficulty breathing
- Shortness of breath
- Fast-beating or pounding heart (heart palpitations)
- Inflammation of the heart (myocarditis)
Fatigue and sleeping problems
- Significant fatigue
- Mood changes
- Chest or stomach pain
- Joint or muscle pain
- Changes in menstrual period cycles
- Post-exertional malaise (when symptoms get worse after physical or mental activities)
Just because certain symptoms are common to long COVID does not mean you do not need to speak to your doctor about them. Some of the most common post-COVID symptoms can overlap with more serious diseases such as headache and confusion for stroke, chest pain for heart attacks or myocarditis, palpitations for arrhythmias, difficulty breathing or shortness of breath for pulmonary embolism, and/or numbness, swelling, or skin changes for deep vein thrombosis. —Dr. Manuelpillai
Additional COVID complications
People who were extremely ill with COVID may have severe damage to their bodies that can’t be treated, like scarring in the lungs, heart damage, and organ failure. These people may never become fully healthy again.
Many patients have spent days or even weeks in ICUs and on ventilators to help them breathe. People in intensive care can get post-ICU syndrome (PICS)—long-term physical, mental, and cognitive challenges. PTSD is also common. Post-ICU symptoms can overlap with typical long COVID symptoms.
Timeline of long haul symptoms
Long COVID is unpredictable. No one really knows when and why one person might improve while another person’s symptoms won’t go away. Some people take many weeks or months to feel well again; others are dealing with long-term symptoms since the pandemic began.
Treatments for long COVID symptoms
Experts still do not know the underlying cause of long COVID, so there is no cure. While some people have noticed that their symptoms improved after getting the COVID vaccine, there isn’t agreement about this in the medical community. Doctors are focusing on relieving symptoms and getting the body back to health.
A growing number of medical centers around the country have set up long COVID clinics to help long haulers get better. At many of the clinics, teams of doctors from different specialties examine patients and work together to provide treatments. Here are a few of the treatments that have helped some people.
Breathing problems and cough
People may continue to have breathlessness or a cough. This may be from inflammation that makes it hard to breathe or take a deep breath.
Steroids can sometimes help treat inflamed lungs. Breathing exercises, slow deep breathing, or yoga breath work can help with lung function and breathing patterns. You may also be referred to pulmonary rehabilitation, which involves exercise training, techniques to improve breathing, counseling, and education.
Cardiac problems and chest pain
You will be referred to a cardiologist about heart rhythm problems and myocarditis (inflammation of the heart muscle) or if you had a heart attack because of COVID. Your doctor may prescribe heart medications or steroids to calm inflammation, or suggest cardiac rehabilitation—a supervised program of exercise, education, and counseling, to improve your heart’s function.
Neurologists may use the same techniques that they use with stroke patients to improve cognitive issues like brain fog and other thinking problems. These include memory exercises and behavioral strategies to help you concentrate. Your doctor may also try stimulant medications (Adderall, Ritalin) to improve your focus.
Fatigue and sleep
An exercise program or multiple sessions with a physical therapist can help fight fatigue and build back strength after weeks or months of inactivity. The therapist should go slowly to avoid a flare-up of symptoms or a relapse. Learning to pace yourself with other activities so you don’t overdo it is also key.
It’s also important to pace yourself during the day, taking time to rest and save your energy. Tracking your activity and noting how you are feeling over time can help you figure out how much activity you can handle without getting overtired.
Your doctor may give you a prescription for stimulant medications to boost your energy. Doctors may also consider other issues like insomnia or obstructive sleep apnea.
For sleeping problems, your doctor may prescribe therapy, such as cognitive behavioral therapy, or a short-term sleep aid. Your doctor may also treat any underlying conditions that are keeping you from getting enough rest, like sleep apnea, anxiety, or pain.
If you are going to do your own research, make sure it is from a credible source (i.e., not YouTube or TikTok or Facebook, etc). —Dr. Manuelpillai
Mental health conditions
Therapy with or without medication can be helpful for mood disorders like depression, anxiety, and PTSD. Your doctor will take any potential side effects and drug interactions into account before prescribing an antidepressant or anti-anxiety drug. Support groups can also be helpful for some people.
Join a long COVID study
Many long COVID patients join research studies to find new ways to relieve symptoms and to help other patients. Survivor Corps, which brings people with long COVID together for support and research, has links to national and state studies. You can also join the COVID Symptom Study, which has you use an app to record your symptoms.
Long-hauler support groups
Coping with long COVID is challenging. That’s why it can be helpful to connect with other patients to share information and for support. Some long COVID clinics offer support groups. Here are some popular online support groups:
- Survivor Corps. A grassroots movement to bring people with long COVID together for support and research.
- Body Politic COVID-19 Support Group. An online support group for more than 11,000 COVID patients and caregivers.
- Long COVID Support Group, A Facebook group with more than 45,000 members.
- Long Haul COVID Fighters - Round 1. A Facebook group for people whose illness began before April 1, 2020.
- Covid-19 Support & Recovery. A Facebook group with almost 50,000 members.
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