What you need to know about long hauler coronavirus symptoms

by Chia-Yi Hou | Nov. 25, 2020 | Nov. 25, 2020

Story at a glance

Long hauler COVID-19 patients experience symptoms for one month or longer.
One research group estimates 10 percent of patients experience prolonged illness.
Long-term COVID symptoms include fatigue, shortness of breath, brain fog and muscle pain.

People experiencing COVID-19 symptoms for a month or longer sometimes go by the term long haulers. A group in the U.K. reports that as many as 10 percent of COVID-19 patients experience a prolonged illness. Experts often use the term “long COVID,” and there’s myriad symptoms that long haulers may exhibit. And no two people may have the same exact experience.

The most common symptoms are fatigue, shortness of breath, cough, joint pain and chest pain, according to the Centers for Disease Control and Prevention (CDC). Other symptoms include difficulty thinking or focusing (also known as brain fog), depression, muscle pain, headache, intermittent fever and heart palpitations. Symptoms may appear at different times and intensity may fluctuate.

Brain fog is a symptom among the more common long COVID symptoms, alongside fatigue. It’s often described as a fuzzy brain feeling where it is difficult to focus or concentrate. Why or how it happens isn’t fully understood scientifically, but is also associated with other illnesses like Lyme disease and fibromyalgia. It can also be related to excessive anxiety or depression.

“Anecdotally, there’s no question that there are a considerable number of individuals who have a postviral syndrome that really, in many respects, can incapacitate them for weeks and weeks following so-called recovery and clearing of the virus,” said Anthony Fauci, who is the director of the National Institute of Allergy and Infectious Diseases, in July during a COVID-19 webinar organized by the International AIDS Society.

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There are social and economic consequences to long COVID.

“Other support group members report being laid off, fired due to their inability to work, or are having to turn down appealing job offers because of their myriad lingering symptoms,” states the Body Politic’s COVID-19 Support Group website. The group has more than 8,000 members and uses Slack as their main communication platform.

Some folks from the Body Politic support group started patient-led research. They published a report about long COVID and are working on a second one. In the research, they found that 70 percent of respondents said that “new symptoms appeared at different times” and 89 percent of respondents said that “symptoms fluctuated in intensity and frequency.”

Long term health effects

Health experts are keeping a close eye on these health complications, which could have long-term effects on people’s health, long after the pandemic is over. Some studies are reporting potential long term health complications like inflammation of heart muscle, lung function abnormalities, kidney injury, rashes and hair loss.

Researchers are continually learning about previously unknown health effects like those experienced by long haulers. A recent preliminary study published in the American Journal of Neuroradiology looked at the brains of six patients. They found that the brains of COVID-19 patients with neurological symptoms, like loss of smell and brain fog, showed metabolic disturbances similar to patients with oxygen deprivation from other causes.

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What we don’t know about long COVID

Experts are trying to understand the details of long COVID and studying its effects on long haulers. What isn’t very well understood is how SARS-CoV-2, the coronavirus that causes COVID-19, acts in our bodies to lead to long COVID symptoms. The mechanisms are not yet clear to scientists.

We also don’t know how to officially diagnose long COVID. Many long haulers have to self-diagnose and figure things out on their own. If they were symptomatic with COVID-19 early during the pandemic but unable to get it confirmed by testing, they may have a hard time getting treatment as a COVID patient, according to the Body Politic. With no proof of the cause of their illness, it makes dealing with their symptoms that much more difficult because they have to convince others that what’s happening to them is real.

Some experts say that as we learn more about long COVID we may learn that there might be multiple types of long COVID syndromes.

What you should do to prepare

People who experience long COVID are diverse, and there’s currently no way to predict whether you will have a short illness or a prolonged one. Talk to your health provider if you feel like you are experiencing COVID-19 symptoms and get tested regularly if you are leaving your home for work or school.

As the weather turns colder, many people are spending more time indoors. At the same time, cases are rising in the U.S. Be prepared to put into practice more serious restrictions and recommendations about your health and safety.

Other resources

The Body Politic Support Group for COVID-19

COVID-19 positive subreddit

COVID Long Haulers Facebook group

Articles about long haulers

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At 12, She’s a Covid ‘Long Hauler’

We Need to Talk About What Coronavirus Recoveries Look Like

I have all the symptoms of a Covid-19 long-hauler — but I’m hesitant to identify myself as one

Puzzling, often debilitating after-effects plaguing COVID-19 “long-haulers”

COVID-19 “Long-Hauler” speaks out about ongoing symptoms

For up-to-date information about COVID-19, check the websites of the Centers for Disease Control and Prevention and the World Health Organization. For updated global case counts, check this page maintained by Johns Hopkins University or the COVID Tracking Project.