We first spoke with Cynthia, a COVID-19 long-hauler, last year. Read that story here.

MILWAUKEE — More than a year after her first COVID-19 infection, Cynthia was finally getting her long-haul symptoms under control. 

Cynthia, who asked to be identified by her first name only, first got sick in September 2020. That infection left her with stubborn symptoms, including chest pain, heart palpitations and fatigue — all of which made it hard to keep up with her work as a neonatal ICU nurse.

By the end of 2021, though, she’d been controlling some symptoms with a new medication plan and building up her strength with daily exercise.

And then the omicron variant came along.

“I had gotten to a point of stability in December. So when I got it again, there was so much disappointment,” Cynthia said. “Like, I got so far. How can I possibly get this again?” 

The second infection was another setback in what Cynthia describes as “kind of a crazy road” with COVID-19. Even 18 months after her first brush with the virus, her journey toward recovery isn’t over — though she’s determined to keep taking it in stride.

 “You know, life throws you a lot of curveballs,” Cynthia said. “And I set a lot of that fear aside, and just focused on what I needed to do to get me toward my goals again.”

* * *

These days, the U.S. has entered a hopeful new phase of the pandemic. Wisconsin has seen its COVID-19 numbers plunge from their omicron peaks, and the CDC has given many Americans the green light to loosen up some of their precautions.

But for Cynthia and other long-haulers like her, the virus’s effects remain very present. 

There’s a wide range of estimates for how many patients are dealing with long COVID-19, also known as “post-COVID syndrome.” Some studies say that 10% of those who catch the virus will face lingering symptoms, while others place that number closer to 50%.

Even on the low end, though, that could leave millions of Americans living with the long-term condition — one that hasn’t been easy for scientists to understand.

“We still have lots and lots of questions to answer,” said Dr. Julie Biller, who directs a clinic for long-haul patients at Froedtert and the Medical College of Wisconsin. “And we do not have a definitive reason why some people have prolonged symptoms after COVID infection. There are a few more hints, but they are hints only.”

Biller has helped lead the Froedtert & MCW clinic, where Cynthia has gotten treatment, since it opened in January 2021. Her team has had over 1,000 patients referred to their care, all of whom have been dealing with symptoms for at least eight weeks after their COVID-19 infections, she said.

In the past year, there have been more clues about the likely root causes of long COVID-19, Biller said — though she cautioned that all the science is still “very preliminary.” 

Some research suggests that brain effects like central sensitization — which is also linked to disorders like fibromyalgia and chronic fatigue — could play a role in long COVID-19 by making patients’ nerves more sensitive, Biller said. Other scientists are also digging into potential links with the Epstein-Barr virus, or with autoantibodies that throw off the delicate balance of the immune system, she said.

“Our body has pro-inflammatory and anti-inflammatory proteins. And it’s a little bit like Goldilocks to be healthy,” Biller said. “You have to be balanced, and everything has to be just right.”

For now, though, experts don’t have one solid answer for why some people are saddled with lasting health problems after COVID-19. In the meantime, clinics like Biller’s are doing their best to manage patients’ symptoms and get them back to some of their daily lives.

“There’s not a magic pill,” Biller said. “There’s not a specific therapy that makes everybody’s symptoms go away completely. But we do have some treatments that can improve and reduce symptoms.”

* * *

The past year has seen a lot of progress for Cynthia’s recovery.

Switching over to new medication at the end of 2021 helped get rid of some of her intense chronic pain — which felt “like walking around with a weight on your chest all the time.” Some of her earlier issues with heart inflammation and lung flareups have also resolved, she said.

Her omicron infection was a setback to her recovery, she said, but wasn’t as intense as her first encounter with the virus. And even though she’s not all the way back to her former health, Cynthia said she’s gotten to reclaim some of her sense of self.

“My experience is still an ongoing journey. I’m at the point where I would say I’m about 80% recovered,” she said. “It’s nice to kind of be on the other side of the hill, so to speak, where I can finally have parts of my life back.”

Cynthia is back to working part-time as a nurse, a job that she described as “a part of my identity and a part of my passion.” She’s also planning to go to grad school to become a neonatal nurse practitioner.

And as of February, she has also gotten back into Irish dancing — something she’s loved since she was 7 years old and had to give up since her COVID-19 infection.

“Being strong enough to be able to handle an hour of high-intensity activity was huge,” Cynthia said. “And also just being back with my friends and in a positive community.”

These days, Cynthia said she has to pay a lot of attention to what her body can handle. She still struggles with post-exertional malaise, which means that if she takes on a lot of activity, her fatigue or chest pain could flare up.

Looking back, Cynthia said there have been times in her recovery where she has pushed herself too hard — like returning to work too quickly after her first infection. She’s had to focus on taking things step by step.

“I’ve learned a lot to go with the flow, which is a very hard thing for me, being a Type A personality. So a lot of my daily routine now is kind of structured on how I feel,” Cynthia said. “On days when my chest pain might flare up, or my fatigue becomes overwhelming, I set aside time to rest.”

Biller said she has noticed that chronic fatigue and mental health challenges can be some of the most prolonged symptoms for her patients. But overall, she’s seen many of her first wave of long-haulers feel better over time, getting closer to their pre-COVID selves.

Biller and Cynthia are both hopeful that future research can provide more answers for long-haulers and improve their quality of life. Biller encouraged those who are facing long-term symptoms to reach out for help, rather than “stay at home and suffer.”

And even though recovery might not be an easy road, Cynthia encouraged other long-haulers to have faith. 

Her own path has had its hurdles — from the fear of how her second infection would play out, to the disappointment of passing the year mark without feeling fully recovered. Still, she hopes that she can keep taking back the parts of her life that matter, while accepting that she might never be exactly the person she was before COVID-19.

“I don’t mean this to sound grim. I actually mean this in a positive way. But when I say my life has changed forever, there’s just, to me, no going back,” Cynthia said. “I’ve become a stronger person, and I’ve become a different person since I’ve had this illness.”