What Is a COVID-Long Hauler? The People Whose COVID-19 Symptoms Won’t Go Away

Groups on Facebook have amassed thousands of members where posters talk about their journey with lingering symptoms and permanent damage due to their COVID-19 infections.

When Michele Finicle, 45, contracted COVID-19 in March, she assumed she had a sinus infection. She’s an Oregon teacher and had been regularly showing up for work at the school her 10-year-old daughter also attends. Her daughter was the first to fall ill. Two weeks later Finicle got sick as well.

My daughter and I both made it through the acute infection. We were never hospitalized for the acute infection. So we thought we had made it,” Finicle told Inside Edition Digital.

For a week, Finicle said they both felt fine, but then secondary symptoms started to show up. Finicle and her daughter are now known as COVID-19 “Long Haulers,” and they are among the many people suffering with COVID-19 symptoms long after their initial infection has passed. Finicle said she’s had an array of symptoms like dizziness, vertigo, joint pain and nerve pain, brain fog and just constant heavy fatigue. She also said her blood pressure has dramatically fluctuated.

“My daughter was actually hospitalized at Randall Children's Hospital for some kidney damage initially from COVID, which has since healed,” she told Inside Edition Digital. “But she had the long haul symptoms that I had, like Tachycardia and resting heart rates of over 140.”

Now, 10 months later, both Finicle and her daughter are starting to see their symptoms subside and Finicle hopes to return to teaching, but still there are some days where their fatigue lingers. A large group of individuals worldwide are now identifying themselves as COVID-19 “long-haulers” and finding support with others who are also suffering.

Groups on Facebook have amassed thousands of members where posters talk about their journey with lingering symptoms and permanent damage due to their COVID-19 infections. Doctors are now beginning to treat patients with long-term symptoms of COVID-19, and clinics are opening up across the U.S. to treat those with what some doctors are calling Post-COVID Syndrome.

Dr. Christian Sandrock, a doctor who works with patients at UC Davis Health’s Post-COVID-19 Clinic in Sacramento, said he has seen numerous patients with persistent symptoms from COVID-19. The patients aren’t confined to people who were hospitalized or had severe COVID-19.

“We see a lot of people who weren't ever hospitalized, so they maybe were younger or even older. They were sick at home. Maybe febrile, body aches, felt crummy for a period of time, but then just never recovered. Or, they recovered a little bit and then got worse again,” Sandrock told Inside Edition Digital.

So, what is defined as post-COVID Syndrome?

“We just really say that they are [people who are] greater than 30 days out from the onset of illness,” Sandrock said. “They have persistent symptoms and they have a confirmed infection, but it's not an active infection.”

Sandrock said he has seen people who still don’t have a sense of taste or smell months later, people with chest pain and shortness of breath, decreased exercise tolerance, among many other things. Why people are having such persistent symptoms a long time after their infection has resolved is something that doctors are still trying to figure out, Sandrock said.

“We think it's probably two things. One is with the loss of taste and smell and some of the other effects, the virus can infect your nerve cells and cause those to die,” Sandrock said. “The other, which is really the bigger effect, is that when the virus replicates and spreads, it can actually cause what we call endothelial damage. So the lining of your blood vessels get damaged and they're now irregular and they become a focal point for clotting.”

But, Sandrock said what many people may be experiencing is microvascular clots, which are so small that they don’t show up on testing.

“So, if you can imagine you have that clotting in your brain and your brain has diminished blood flow, so now you notice you have a brain fog or you have some depression or some psychiatric changes,” he said. “Same thing in your heart. You're having diminished blood flow in your heart, so you get chest pain when you walk a short distance.”

Joe Hoffman, 51, said he was very active before he came down with COVID-19 over the summer. Now, many months later, he said he can’t exercise at all. He has horrible fatigue, consistent brain fog and short term memory loss. Hoffman, who lives in Washington State, has had to stop going to work due to his symptoms.

“I don't want to say depressing, but it is. Just my way of life's changed. Not working out anymore, which honestly, as you get older, a big part of your mental stability is that you have something to go to every day and I don’t,” Hoffman said. “I'm actually afraid to go and take a run. Because I just don't know how my lungs are going to react. It's difficult to deal with.”

Some patients who had asymptomatic COVID-19 and assumed they were fine are also now finding that they may have suffered longer-term damage without knowing. Dr. Brittany Bankhead-Kendall, a trauma surgeon and ICU doctor at Texas Tech University Health Science Center, said she’s consistently seeing patients with damaged lungs due to COVID-19, many of whom come into the hospital for something entirely different.

“As a trauma surgeon, we've seen more and more that people who were just going on about their daily lives and maybe tripped and fell or maybe had a car accident, they're getting chest x-rays, and without symptoms of COVID, but knowing that they had a COVID test positive in the past that they didn't think they had problems with. Those chest x-rays are looking bad,” Bankhead-Kendall said. “They don't look good. They don't look normal. And they're worse than smokers' x-rays a lot of the time, even.”

Bankhead-Kendall said what they are seeing is scar tissue in the lung, a dense fibrosis, that builds up due to COVID-19. If it’s particularly bad it can inhibit breathing. Initially, people may not know because it’s not causing them current problems, she said, but it’s not clear how that scarring will affect people long term.

“It can absolutely fester over time and as you age and get older, could absolutely lead to long-term problems. And not only that, but also heart problems, because the heart has to pump into the lungs. And so if the resistance of the lungs increases, then it could potentially cause heart damage as well, Bankhead-Kendall said.

Research on COVID long-haulers remains scant, but a recent study published in Practice estimated that approximately 10% of people who have had COVID-19 have experienced prolonged symptoms.

Cindee Maduri, a 47-year-old registered nurse from California who tested positive for COVID-19 in December, said she thinks she took the virus too lightly in the beginning. She is still struggling with chest pain 41 days after her diagnosis.

“In the beginning people were asking me, ‘what do you think of COVID?’ And unfortunately I was like, ‘Oh, the death rate is very similar to the flu. Yes, you're going to get sick from it, but everything's going to be OK.’” Maduri told Inside Edition Digital.

“I need to amend that and just say that it is something that can really affect you,” she continued. “We don't really know what's causing the long-haul stuff, but I do want people to be more aware of it and take it more seriously than what it has been.”