Covid-19 Survivors: What We Can Learn from Long Haulers

The Covid-19 long haulers

It’s been eight months since New York City event coordinator Lyss Stern first came down with Covid-19. Fortunately, she had a relatively mild case.

Yet Stern, 47, can still barely taste or smell. And she’s just now getting some relief from the near-constant ringing in her ears. “This virus is a beast,” says Stern. “You don’t want to get it.”

There are many “Covid-19 long haulers” just like Stern who are experiencing ongoing and persistent symptoms, including extreme fatigue, brain fog, shortness of breath, numbness and tingling, heart palpitations, skin symptoms, “Covid toes,” and more.

These lingering symptoms may be caused by the virus itself, intensive treatments such as intubation, time spent bedridden in the hospital, anxiety and depression brought on by the illness, or a combination of all of these factors.

There’s no precise definition of “long Covid” yet, and researchers are still trying to determine how many people will have ongoing symptoms. A study published in JAMA in July 2020 found that 125 of 143 Italians ages 19 to 84 years who were hospitalized with Covid-19 still experienced symptoms two months after their first symptom.

Other studies show that it’s not just the sickest of the sick; even people like Stern with mild illness can have lingering symptoms. Clinics devoted to post-Covid-19 care are popping up across the map to help long haulers get the care and answers they need.

Understanding recovery

Researchers don’t yet know why some people recover more quickly than others. A report in medRxiv in October 2020 suggests that older people, women, overweight people, and those with more than five symptoms during the first week of their illness were among the most likely to be long haulers.

The most common long-Covid symptoms cited in this study were fatigue, headache, shortness of breath, and loss of smell according to information collected by an app. (This study has not gone through the rigorous peer review process yet.)

Other studies, including one in JAMA Cardiology in September 2020, have documented heart inflammation brought on by myocarditis linked to Covid-19 in competitive athletes who had mild to no Covid-19 symptoms. If not identified in advance, this heart condition can lead to sudden death in athletes.

Some people who had Covid-19 experience what’s known as Covid toes. These are discolored, swollen toes that can last up to 150 days, according to a study presented at the 29th European Academy of Dermatology and Venereology (EADV) Congress.

And this all occurs even after a negative Covid-19 test, says Edgar Sanchez, MD, an infectious disease specialist with Orlando Health in Florida. “You can have a positive test for up to three months without any symptoms or a negative test with symptoms,” he says.

Importantly, lingering symptoms do not necessarily mean that you are still contagious. “If you have mild disease, you are contagious for 10 days even if you still have symptoms after that,” he adds. “And if you had a severe case of Covid-19, you can infect others for up to 20 days.” (In one cause, circulatory problems caused one man to have a Covid-related leg amputation.)

Lingering symptoms

This wouldn’t be the first virus to cause lingering symptoms, says Sonja Bartolome, MD, a lung disease expert at UT Southwestern in Dallas.

“If you had chicken pox as a kid, it can reactivate and cause shingles when you are an adult and the herpes virus that causes cold sores also reactivates,” she says. “We have lots of viruses that come back and/or continue to cause symptoms.”

And Covid-19 is an all-new virus so there’s still a lot that doctors don’t know about what it is capable of, she adds. “It can be months after and you may still have a fast heart rate and shortness of breath, and we are still not sure why that happens and what it means,” she says. “The good news is that it does appear to get better over time.”

There have been reports of lung scarring in people recovering from Covid-19, and much of this is to be expected and not a cause to panic, Dr. Bartolome says. “It takes time for an X-ray to clear when you have had lung damage.”

Getting back to normal

Domitilo Correa, 53, a former IT specialist in Queens, New York, was being treated for chronic lymphocytic leukemia, a type of blood cancer, when he developed Covid-19 in late April 2020.

What started with fevers soon morphed into difficulty breathing. He was eventually hospitalized, his cancer treatment was put on hold, and he spent close to a month in the intensive care unit (ICU), where he was placed on a ventilator for 10 days to help him breathe.

And while Correa is now on the road to recovery and has been able to resume his cancer treatment, he still struggles with shortness of breath, overwhelming fatigue, high blood pressure, heart palpitations, chest pain, and nerve pain.

“I have no feeling in the pinkie or ring finger of my dominant hand since I was in the ICU,” he says. His doctors are baffled by this; he’s now seeing a neurologist to get answers.

Spending time in a hospital can contribute to muscle loss, weakness and overall de-conditioning, says Dora Kanellopoulos, PhD, a clinical psychologist and assistant professor of psychology in psychiatry at Weill Cornell Medical College in New York City.

She runs a virtual support group for Covid-19 survivors who had severe disease. She has seen firsthand how this disease can cause lingering physical and emotional symptoms. It takes time to get your strength back after a long illness, she says.

Correa lives in a second-floor walk-up and admits that he now gets breathless when he climbs these stairs. Stern is finally able to exercise again.

Most long haulers report ongoing and often overwhelming fatigue. “It’s like being under a weighted blanket,” Stern says. “You literally can’t move.”

Risk for adjustment disorder

“Many of these people were previously healthy, loving life and are not even really aware of what happened to them,” Kanellopoulos says.

This sets them up for an adjustment disorder or a group of symptoms, including stress, sadness or hopelessness, and physical symptoms that can occur after a stressful life event, she explains.

Digna Lebron, 71, a retired city service worker in Brooklyn, remembers her son being admitted to the hospital for Covid-19 around the same time that she started feeling feverish and unwell. Her daughter took her to the hospital where she was also admitted in mid-March.

But her memories are pretty much blank from that point on. Lebron was on a ventilator for three weeks and underwent a tracheostomy, a procedure in which a hole is created in your windpipe (trachea) so you can breathe.

Tragically, Lebron’s 53-year-old son, Tito, passed away from Covid-19 while she was hospitalized. She wasn’t told until after she had turned a corner with her own illness.

“This is still very painful,” she says. “He was my oldest child and my only son.” She spent most of her adult life caring for Tito who had advanced kidney disease.

Many people are learning how to cope with Covid-19 grief, but Lebron has the added stress of her own physical recovery on top of her anguish.

“Physically I am doing 90 percent better, but mentally it’s about 70 percent,” she says. Lebron says she is not the same person that she was before Covid-19. “The woman who was so strong and was always there isn’t there anymore.”

Mental health struggles following Covid-19

It can be hard to uncover what is actually happening to your body versus what is in your mind, even after you recover, Kanellopoulos says. “We are seeing a lot of anxiety as patients worry about their breathing and depression that comes from accepting new limitations, which is difficult to do.”

There is also pressure to be normal again at home and work. “Family members or colleagues may lose patience as time goes on,” Kanellopoulos says.

Correa has had anxiety throughout his life, but it was nothing like the kind that occurred after he was released from the hospital following Covid-19.

“I was having full-blown panic attacks,” he says. “In the first couple of weeks, I was constantly checking my temperature and my oxygen levels. I was panicked that I would have to go back to the hospital.”

This anxiety also affected his relationship. “My wife couldn’t understand why this was still happening.”

Cognitive fog

Many like Stern also describe a deep brain fog. “I keep multiple notebooks with lists and check things off as I do them,” says the once-proficient multitasking mom. “I love to read and can’t read straight through anymore either.”

She even found herself needing to take breaks while binge watching Netflix’s Emily in Paris, which would not have been necessary pre-Covid.

“Mood can exacerbate cognitive dysfunction or brain fog but we are also seeing independent reports of this happening outside of mood,” Kanellopoulos says.

Research is continuing at a frenzied pace, but there are currently more questions about long Covid than there are answers. A lot of hope is pinned on studies now underway, including the Post-Hospitalization COVID-19 Study (PHOSP-COVID), which aims to follow 10,000 people who have been hospitalized with Covid-19 for one year to gain a better understanding of why these symptoms are occurring and just how long they will last.

Researchers from Nova Southeastern University in Broward County, Florida, just received $4 million from the Centers for Disease Control and Prevention for a Covid long-haulers study.

How to cope

Long-haulers are not powerless even as researchers seek to understand more about long Covid. There are things you can do to cope with post-Covid-19 symptoms today, Kanellopoulos says. These include:

Talking to your doctor about any concerns

There’s so much research going on about how to treat lingering symptoms. Stern found help with acupuncture for ringing in her ears, while other long-haulers sought counseling to help cope with anxiety or physical therapy to build muscle and strength.

Joining a virtual support group

These groups can be extremely helpful. “You don’t need to participate right away,” Kanellopoulos says. “Start by listening until you get comfortable.”

Correa agrees. “The group has helped me because I have been able to have a platform that I can express how I am feeling and what I go through on a daily basis,” he says.

“We are all joined together by the common cause—Covid-19,” Lebron says. “It doesn’t matter about your age, preexisting conditions, or pedigree. Covid-19 does not discriminate. We are on a journey that seems to be the same.”

Taking the edge off

Mindfulness, deep breathing, yoga or other relaxation therapies can help you reduce anxiety and depression that may worsen your symptoms, Kanellopoulos says.

Find something that you enjoy that fits into your lifestyle, she suggests. A number of apps teach meditation, mindfulness, and deep breathing. Stern has turned to meditation, yoga, and hot baths to ease her anxiety.

Paying it forward

To get answers and to help others, Stern joined a study at the Center for Post-COVID Care at Mount Sinai. She’s also donating antibodies to help others who are fighting the virus build an immune response. See if there are any opportunities in your community.

Giving it time

Managing expectations can help people better cope with lingering symptoms, Dr. Sanchez says. “During acute illness, I reassure patients that they are getting better even if it is really slowly.” It can be hard to learn what is normal recovery, what is anxiety, and what is worsening or a relapse, he notes.

“As long as you can do daily activities and can catch your breath, you are OK,” he says.

Still, it’s better to be safe than sorry. “If you have new onset or chest pain, go to the ER,” he says. “If you could walk up a flight of stairs last week and now can’t, that’s unusual,” says Dr. Bartolome. But “if you are just ‘not better’ yet, give it some time.”

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