Aside from the rising death toll, one of the scarier things about this B-word of a pandemic is that the disease caused by a SARS-CoV-2 infection can have lasting effects on the body. And that can be true even for people who initially had mild symptoms or none at all.
Folks who experience this are called “long haulers.” For them, the aftermath of a COVID-19 infection becomes like a chronic illness.
“We need to stop thinking of COVID-19 as something like the flu,” says Natalie Lambert, PhD, associate research professor of medicine at Indiana University School of Medicine. “We have to start talking about this as a very serious virus that can cause extensive damage to the body, no matter what age you are or what your underlying health is.”
That all sounds next-level terrifying. But research is in the works and resources are cropping up to aid current long haulers out there. What are long-term COVID-19 symptoms? And where should you turn for help if you’re a long hauler? Let’s unpack it.
If you develop COVID-19, keep in mind that you may need about 2 weeks to begin feeling like yourself again. So how do you know if you’re a long hauler?
“People who are still sick beyond the 2-week period that you would expect for a flu,” Lambert says, “that’s often the beginning of someone’s more long-haul-type situation.”
Any symptom you might have as a result of a SARS-CoV-2 infection might hang around for a while, kind of like that creep at the bar who can’t take a hint. If you need a refresher, the Center for Disease Control and Prevention (CDC) lists 11 common symptoms of COVID-19. But you may also develop completely different symptoms as a result of lasting inflammation. Based on crowdsourced data, we compiled the top 15 symptoms long haulers report.
Top 15 reported long-hauler symptoms
- body aches or muscle or joint pain
- brain fog, difficulty concentrating, or memory challenges
- chest tightness, pressure, or pain
- chills or sweats
- elevated temperature
- heart palpitations/tachycardia
- inability to exercise
- shortness of breath or difficulty breathing
“The way that people experience COVID-19 can be very different person by person,” Lambert says. “Some people, in the first 2 weeks that they’re sick, they think it feels like a typical cold. And then 2 or 3 weeks later, they might start having heart problems. Other people will get blurry vision, and they’ll start losing their hair.”
As if they weren’t busy enough dealing with their new spate of health issues, long haulers out there have gotten together to help everyone else. We based our top 15 list on their hard work above. But there are so many more possible symptoms. For full lists, check out the resources below, especially if you feel anything wonky going on.
- Lambert created a report by analyzing social media survey data from Survivor Corps, a grassroots movement that connects COVID-19 survivors. The survey includes responses from more than 1,500 people with long-term COVID-19. And Lambert’s report compiles 98 potential symptoms based on their answers.
- Members from an online COVID-19 support group also conducted a survey of 640 people about their ongoing coronavirus ailments. The citizen researchers compiled their Patient-Led Research for COVID-19 data to form a list of 62 potential long-hauler symptoms.
Although COVID-19 long-hauler symptoms can include any odd thing from scalp pain to an aching jaw, researchers are seeing some key themes.
1. Fatigue and brain fog
A lack of focus coupled with extreme exhaustion can make you feel like the COVID beast has chewed you up and spit you out. One of the most common post-COVID complications is what’s called brain fog.
Some COVID long haulers report trouble concentrating and having difficulty with memory. And in a study out of Italy, more than half (53.1 percent) of 179 patients reported lasting fatigue, even after their acute coronavirus symptoms, like a fever, subsided.
“The fatigue persists for months,” Lambert says. “Many people report if they get up and take a shower they’re pretty much done for the day. They can’t get out of bed after that.”
Researchers, including the esteemed Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, have compared these neurological long-hauler symptoms to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Similar debilitating symptoms also cropped up in some patients following the SARS outbreak nearly 2 decades ago.
New research out of UCLA suggests the brain fog could also partially be related to post-traumatic stress disorder (PTSD). A serious health emergency could certainly bring that on. “But at the same time,” Lambert says, “we know from scans of the brain that some people do get micro clots in their brain from COVID. And we know that the virus is specifically attacking the nervous system.”
2. Respiratory issues
The COVID beast can really knock the wind out of you too. Recent studies show that COVID-19 can cause long-term heart and lung damage, especially in severe cases. But the damage can improve over time.
A persistent cough as well as shortness of breath are two common concerns among long haulers. But they also report an inability to be active or exercise. That was one of the top five symptoms reported on the Survivor Corps survey. In the Patient-Led Research for COVID-19 survey, 68 percent of people reported being physically active before the onset of their symptoms. And 70 percent now report being mostly sedentary in their COVID aftermath.
And while certainly a bout of any nasty illness can make climbing the stairs to your apartment a little harder until you regain your strength, Lambert says that’s not necessarily what’s happening with long haulers. “With people who are having long-term COVID-19 impact,” she explains, “it’s not just that it takes a lot more time, people are feeling very ill for a very long time.”
3. Aches and pains
You may also feel like the COVID beast has played schoolyard bully with your body. The Survivor Corps survey results show that more than a quarter (26.5 percent) of reported long-hauler symptoms are associated with pain.
“Many people report a tingling or burning in their extremities, that they have pain in their joints, or they have pain in their feet,” Lambert says. “Sometimes it’s actual nerve pain. And other times it’s a type of inflammation that’s causing the pain.” Organ damage can cause major discomfort as well. Lower back pain, for example, could indicate an impact to the kidneys, Lambert adds.
Seek emergency medical attention if you experience an emergency warning sign, whether early on in your COVID-19 infection or as a long hauler. The CDC lists 5 emergency warning signs.
You should call your doctor at any time, however, if you’re having a severe symptom or concern. Dr. Ken Perry, FACEP, an emergency physician in Charleston, South Carolina, says to get your primary care doctor involved early if you have long-term symptoms that are getting in the way of your daily activities.
“There is always a concern that these symptoms are actually signs of damage to the heart or lungs or other organ system,” he says. “A primary care physician can determine if and when further specialists or testing is appropriate.”
Be aware that some long haulers report not being taken seriously about their concerns. Part of the issue is that some people may have had COVID-19 but don’t have a test result to prove it, especially if they contracted the virus in the earlier days of the pandemic when tests were in short supply.
“You might have to educate your doctor a little bit,” Lambert suggests. “You might be the first person that they’ve seen with these long-term symptoms.” She recommends downloading or printing info from the Survivor Corps website and taking it with you to your appointment.
“We are all going through this together and learning as we go,” Perry says. “As patients continue to seek assistance with new or changing symptoms, their doctors may not have much to add, which can leave both feeling helpless.”
If you’re experiencing long-haul COVID-19, it’s important to know that there are resources. “There are thousands of researchers and health experts around the world coming together to try to get solutions to these problems,” Lambert says.
Hospitals have designed clinics specifically for long haulers, and more are cropping up as the pandemic progresses.
Dr. Sarah Jolley, a pulmonary and critical care medicine specialist with UCHealth University of Colorado Hospital, was in the process of establishing an outpatient clinic for ICU survivors before the pandemic began. When COVID-19 hit, the clinic became a Post COVID ICU resource. But Jolley says an increasing number of COVID-19 survivors who weren’t in the ICU or who weren’t even hospitalized also needed help.
“We have started to put together a team of docs,” Jolley says, “from cardiology, neurology, physical medicine, and rehabilitation, and then myself from pulmonary, and likely some involvement from primary care, to streamline or more standardize what care these patients are getting.”
Jolley says the clinic is modeled after the Mount Sinai Center for Post COVID Care in New York City. “Our general approach,” she explains, “is to do an intake based on what symptoms they have, then put them in touch with the sub-specialists that are primarily seeing new post-COVID patients to then decide what additional testing needs to be done.”
Patients might see a neuro infectious disease doctor to treat any neurological effects of the virus, a cardiologist to treat any long-term heart issues, as well as physical medicine and rehabilitation specialists.
“I think what we’re hearing from a lot of people,” Jolley says, “even young, previously healthy people, is that they aren’t able to get back to their level of fitness that they were at before. And so we’re trying to figure out how we can try to optimize that recovery.”
You may want to reach out to one of the many emerging post-COVID care clinics, rehabilitation facilities, and programs for telehealth services (if offered) or in-person appointments if you live nearby.
Here are a few to consider:
- Mount Sinai Center for Post-COVID Care – New York City Area
- University of Colorado Post COVID ICU Clinic – Aurora, Colorado
- GW Medical Faculty Associates COVD-19 Recovery Clinic – Washington, D.C.
- UCDavis Health Post-COVID Clinic – Sacramento, California
- Mayo Clinic COVID Activity Rehabilitation Program (CARP) – Rochester, Minnesota
- UIHC Respiratory Illness Follow-Up Clinic – Iowa City, Iowa
- Penn Medicine’s Post-COVID Assessment and Recovery Clinic – 3 locations in Pennsylvania
Unfortunately there’s no tried-and-true guidebook out there yet on self-care and recovery as a long hauler. “As research comes out,” Perry says, “we are trying to disseminate the information as quickly as possible.”
As a long hauler, you may have a new normal, at least for a while. “The reality is that we are very early in this process,” Perry says, “and what seems like permanent in the moment may resolve. If you are suffering a symptom now it may clear up in the future. It is very likely that this is going to be a mix of good days and bad days.”
And you’ll have to define what that new normal means for you — because it will be different from person to person. Don’t place pressure on yourself — or let others place pressure on you — to get back to pre-COVID-life.
“Each patient’s recovery seems to be pretty variable,” Jolley says. “And I don’t think we have enough understanding of why that’s the case or why some people get better quicker. I think we need more research to understand that.”
Remember, you’re not alone, and you can connect with others who have survived the coronavirus and learn where they’re at in their recovery process. You might also find it empowering to contribute to ongoing long-hauler research, studies, and surveys.
- Survivor Corps. This not-for-profit grassroots movement has 110K+ members in its Facebook group.
- Body Politic COVID-19 Support Group. This Slack group has 14K+ members, and more than 50 channels, including dedicated discussions for those who are 90 days or more into their coronavirus saga.
- Follow the hashtags #LongHaulers and #LongCovid on social channels
Research and surveys
Until more research is done, we don’t know yet how long it will take long haulers to recover from lingering COVID-19 symptoms or health issues that rear up post infection. But for now, we can look at current stats and what they tell us.
A CDC survey study found that 35 percent of people who were not hospitalized for COVID-19 had not returned to their normal state of health 2 to 3 weeks out from their positive test results.
In the Patient-Led Research for COVID-19 conducted in May, 90 percent of the 640 respondents had not yet fully recovered from their symptoms. Of the 60 people who had recovered, the average timeframe for recovery was 27 days. The people who had not recovered said they’d been experiencing symptoms for an average of 40 days at the time of the survey.
Lambert, who studies the Survivor Corps data, says, “For the average long hauler, it’s many months that they’ve been sick.”
But don’t lose hope. Recovery can take a lot of time, but Lambert says she’s seeing people improve after months of illness. “There’s this great theme of people hiking up a mountain and posting a picture,” she adds. “It’s a rite of passage.”
The situation with long haulers and the pandemic in general is a waiting game. “We need doctors to learn as much as possible about the disease and to find ways to help people,” Lambert says. But in the meantime, she says we need to slow the spread of COVID-19 with the tools we already have.
“There’s a lot of fatigue for wearing masks and staying home, but it is worth it,” she adds. I think the worst possible thing that we could do is try to get herd immunity. There are lots of reasons why that won’t work, but we need to try to prevent as many people as possible from getting COVID-19.”
The bottom line is that the novel coronavirus is absolutely Not. Like. The. Flu. “Every single day, we’re learning more about how it damages the body,” Lambert says. “I have talked to and listened to thousands of people who are struggling to get back to any sense of being healthy again. It’s young people. It’s people who were marathon runners.”
The reality is that nearly 8 million people have contracted SARS-CoV-2 in the U.S. already, and the number of long haulers is growing. If you do join the ranks of this expanding group, Lambert encourages people to stay informed about developments, treatments, and resources by following websites like Survivor Corps.
Jennifer Chesak is a Nashville-based freelance book editor and writing instructor. She earned her Master of Science in journalism from Northwestern’s Medill and is working on her first fiction novel, set in her native state of North Dakota.