What Is a COVID Long-Hauler?

Roughly a year after the first case of the coronavirus disease 2019 (COVID-19) was detected in the United States, more than 100 million people across the world have been infected and 2.2 million have died, as of Feb. 2, 2021. Even for those who recover, this virus, also known as SARS-CoV-2, poses serious long-term physical and mental challenges.

It is estimated that 10% of COVID-19 patients become long-haulers, people who experience lingering symptoms of COVID-19 for weeks or months after they have been infected. The majority of COVID long-haulers test negative for the disease. Not a lot is known about COVID long-haulers at the moment. Both people with severe cases of the disease and those who only have mild symptoms can become long-haulers. The prolonged symptoms can vary from person to person. The medical community is still trying to sort out the causes of and risk factors for these long-lasting health issues from COVID-19.

COVID-19 Statistics

Global:

  • Global cases: 102,942,987
  • Global deaths: 2,232,233

United States:

  • U.S. cases: 26,160,210
  • U.S. deaths: 441,831

Vaccinations:

  • Global: More than 101 million
  • United States: 32,780,860

*As of February 2, 2021.

Woman suffering in bed with a fever and flu like symptoms

Justin Paget / Getty Images

Types of COVID-19 Long-Term Effects

The novel coronavirus is a versatile pathogen. It mostly impacts the respiratory system, but as infections have spread, it's become apparent that the virus is capable of wreaking havoc on many other parts of the body.

COVID-19 is known to affect virtually every body system, including:

  • Lungs
  • Brain
  • Heart
  • Blood
  • Kidneys
  • Liver

Since COVID-19 can impact so many parts of the body, it can cause a wide range of symptoms. Even after acute illness has passed, these symptoms can linger, affecting some—or all—of the same body systems.

What's In a Name?

Since the novel coronavirus is a new virus, there is very little information on the long-term consequences of the disease it causes.There isn't even a real consensus on what to call the long-term condition that stems from COVID-19. The following names have been used:

  • Chronic COVID syndrome
  • Long COVID
  • Long-haul COVID
  • Post-acute COVID
  • Persistent COVID-19
  • Post-COVID-19 manifestations

Experts are also not sure how to define long-term COVID-related illness. One study defined post-acute COVID-19 as extending beyond three weeks from the onset of first symptoms and chronic COVID-19 as extending beyond 12 weeks. 

Symptoms of Long-Haulers

The five most common symptoms of COVID long-haulers, according to the Centers for Disease Control and Prevention (CDC), are:

  • Fatigue
  • Shortness of breath
  • Cough
  • Joint pain
  • Chest pain

Not all COVID long-haulers, however, have the same symptoms. One report identified as many as 50 symptoms that are associated with long-term COVID illness through a survey of 1,500 COVID long-haulers. Other reported symptoms of COVID long-haulers include:

  • Difficulty with thinking and concentration, often referred to as brain fog
  • Depression
  • Muscle pain
  • Headache
  • Intermittent fever
  • Heart palpitations
  • Diarrhea
  • Nausea or vomiting
  • Neuropathy in the hands and feet
  • Sore throat
  • Chills and sweats
  • Partial or complete loss of taste
  • Anxiety
  • Blurry vision
  • Tinnitus
  • Dry eyes
  • Tremors or shakiness
  • Abdominal pain
  • Floaters or flashes
  • Rash
  • Muscle twitching
  • Calf cramps
  • Irritability

The authors of the survey report concluded that the symptoms of COVID long-haulers are far more numerous than what is currently listed on the CDC website. The survey results also suggest that other than the lungs and heart, the brain, whole body, eye, and skin are also frequently affected in COVID long-haulers.

Complications

Possible long-term COVID complications include:

  • Inflammation of the heart muscle
  • Lung function abnormalities
  • Acute kidney injury
  • Hair loss
  • Smell and taste problems
  • Sleep issues
  • Difficulty with concentration and memory problems
  • Changes in mood

Causes

There's still a lot to learn when it comes to the long-term effects of COVID-19. It remains unknown why COVID symptoms linger in some people. One proposed theory hypothesizes that the virus probably remains in the bodies of COVID long-haulers in some small form. Another theory suggests that the immune systems of long-haulers continue to overreact even after the infection has passed.

It isn't clear why some people have chronic COVID complications while others recover completely. Long-term effects have been reported both by people who had moderate to severe cases of COVID and in those who had milder cases. They seem to affect many different people: Those with or without chronic conditions, are young or old, and have been hospitalized or not. There aren't any clear patterns yet indicating why someone is at higher risk of long-term complications from COVID-19. A number of studies are underway to investigate the causes and risk factors.

Diagnosis

Many COVID long-haulers never had lab confirmation of COVID-19, with only a quarter of respondents in another survey reporting that they had tested positive for the disease. This contributed to skepticism that COVID long-haulers' symptoms are not real, and some have reported that their persistent symptoms were not treated seriously. It's therefore important to speak up and ask your doctor if you suspect that you have prolonged symptoms of COVID, even if you have not been tested positive before.

There is currently no test to diagnose long-term complications from COVID-19, but blood tests may help diagnose problems from long-term COVID complications.

The following blood tests may be ordered based on the symptoms you have:

  • Brain natriuretic peptides: Elevations in the proteins measured in this test can indicate heart failure.
  • Complete blood count: This can rule out anemia in a person who is short of breath and provide information about red and white blood cell counts. An elevated white blood cell count can signal an active infection. This test can also be used to reveal lymphopenia, a feature of acute COVID illness where a type of white blood cell called lymphocytes are reduced.
  • C-reactive protein: This test detects the liver's response to inflammation in the body. This biomarker is usually elevated in people with COVID-19.
  • Ferritin: This test can also be used to detect anemia or problems with red blood cells, as well as inflammation in the body.
  • Metabolic panels: Basic or complete metabolic panels (CMPs) can be used to detect imbalances in minerals and electrolytes, as well as provide information on kidney and liver function. You may also have kidney or liver panels done, which collect much of the information from a CMP plus more about renal and hepatic function.
  • Troponin: Elevated troponin levels can indicate heart damage or even a heart attack.

Your doctor may also order tests like an electrocardiogram if there is concern for heart damage from COVID-19 or chest x-rays to monitor for any lung damage. The British Thoracic Society recommends that chest x-rays should be done for people with significant respiratory illness that have lasted 12 weeks.

Treatment

Just as there is no one way to diagnose long-haul COVID, there is no one treatment that can make all COVID symptoms go away. In some cases, particularly with lung damage, changes may be permanent and require ongoing care. Your doctor may refer you to a respiratory or cardiac specialist after a difficult case of COVID or if there is evidence of permanent damage.

The needs of people facing long-term COVID complications are vast. People who were critically ill and required mechanical ventilation or dialysis may face ongoing health challenges as they recover. Even people with milder cases can struggle with ongoing fatigue, cough, shortness of breath, and post-traumatic stress disorder. Treatment is centered on the biggest issue you are facing that has the greatest impact on your ability to return to a normal way of life.

Your doctor may recommend or prescribe medications to support your recovery like:

  • Antidepressants or medications to cope with anxiety
  • Blood thinners
  • Cardiac medications
  • Cough suppressants or expectorants for a long-lasting cough
  • Pain medications
  • Steroids

Long-haul COVID problems are also addressed through supportive care. There are a number of things you can do to keep your body strong and healthy as it fights the virus and recovers. These include:

  • Breathing exercises
  • Eating healthy
  • Exercise
  • Mental health support or counseling
  • Physical therapy
  • Rehabilitation

Prognosis

Unfortunately, because long-term complications of COVID-19 are so new and research on them is still ongoing, it is difficult to say when ongoing symptoms may resolve and what the outlook for COVID long-haulers looks like. A majority of people with COVID-19 see their symptoms resolve in a matter of weeks. For those who have lingering problems that go on for months, there may be permanent damage that results in a chronic health condition. See a doctor if your symptoms last for more than a few weeks, and they will help guide you in managing any ongoing health issues.

Coping

Coping with changes from prolonged COVID-19 symptoms may be the most difficult aspect of recovery. For young people who lived an active life, fatigue and a lack of energy can be hard to cope with. For older adults, new problems from COVID-19 could add to a number of existing conditions and make it even more difficult to function independently at home.

Ongoing support from family, friends, community organizations, online groups, and medical professionals can all help you deal with the long-term effects of COVID-19.

Two nonprofit organizations provide support specifically to COVID long-haulers:

There are many other financial and healthcare resources available to help people who have been infected with COVID-19, such as Benefits.gov.

A Word From Verywell

COVID-19 has impacted millions of people across the globe, and for some, it has brought new, permanent health challenges. COVID long-hauler symptoms can last for weeks and even months, or the virus could cause permanent damage to organs like your heart and lungs. The emotional toll of new health problems and the stress of quarantining can be difficult to be cope with, but know that you are not alone. Family, friends, community services, and health care providers can all offer support in dealing with ongoing problems from COVID-19.

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