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From Back Pain to Coughing, Life with Long-Haul COVID-19

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Some people have persistent symptoms of COVID-19 long after the worst of the infection has passed. Credit Image: Daniel Lozano Gonzale/Getty Images
  • More than 9 months since the COVID-19 pandemic started in the United States, some people still have symptoms long after they’ve “recovered.”
  • Experts are learning more about these “long-haul” COVID-19 cases.
  • Symptoms are wide-ranging, and there’s little experts can do to treat them.

In April, Dr. Scott Krakower, a child psychiatrist at Zucker Hillside Hospital in Glen Oaks, New York, was diagnosed with COVID-19.

It took 4 months for him to begin to feel like his normal self again, and he’s still coping with lingering symptoms.

“I was coughing until almost 3 weeks ago or so — and honestly, I started coughing again yesterday, so I don’t know,” Krakower told Healthline.

“I still cough, but it’s few and far between now,” he continued.

Krakower is one of many COVID-19 survivors who have reported long-lingering or recurrent symptoms, weeks or even months after tests show their bodies have cleared the virus.

According to the World Health Organization (WHO), most people who develop COVID-19 recover within 2 to 6 weeks. But in some cases, symptoms come back or linger for months after the virus clears.

These so-called “long-haulers” raise concerns about the long-term consequences of the pandemic, not only for individual people but also at a societal level.

“I think we need to really pay attention to these patients, and develop research dollars, and see what we can do to help them — because the wave is coming,” Dr. Robert Glatter, an emergency department physician at Lenox Hill Hospital in New York City, told Healthline.

“We can see the wave that’s coming: all the people that can’t really perform their jobs, some of whom need to be in subacute rehab settings to convalesce,” he added.

Krakower was tested for the new coronavirus in April after he developed chills and lost his sense of smell and taste.

“It completely wiped my taste and smell to the point that I was literally tasting like paper, and that was actually scary for me — tremendously anxiety provoking,” he recalled.

Shortly after his test results came back positive, his symptoms worsened.

He began coughing around the clock and developed severe swelling in his throat. He found himself struggling to speak, eat solid food, and even swallow liquids.

Treatment with vitamin and amino acid supplements, oral famotidine, and an antibiotic for a suspected secondary bacterial infection weren’t enough to get his symptoms under control.

He was reluctant to accept treatment with steroids or visit the hospital, but he did both when it became clear he was getting worse instead of better.

“I feel like the difficulty swallowing is ultimately what pushed me into the hospital because I wasn’t able to eat. I wasn’t even able to take down liquid when I finally went in,” he said.

“Everything was just burning. It was a terrible time. I was coughing up blood, too,” he added.

After Krakower was given multiple rounds of intravenous steroids and famotidine in the hospital, he was discharged. He was later prescribed high doses of oral steroids for another 6 weeks.

“I didn’t want to go back on the steroids. I didn’t want the side effects of the steroids, but I had to because I was choking even on soft foods,” he said.

By June, Krakower’s test results were negative for the virus.

However, it wasn’t until August that he could eat solid foods again.

Six months later, most of his symptoms have finally cleared.

“I feel like for the most part it’s gone. I don’t want to jinx it, but most of my symptoms are pretty much gone,” he said.

Even mild cases of COVID-19 may cause lingering symptoms or long-term side effects, reports the WHO. The risk of persistent symptoms isn’t limited to older adults or those with underlying health conditions either.

Elissa Miolene is a 27-year-old communications specialist who developed a relatively mild case of COVID-19 in March. She describes herself as “relatively healthy and pretty fit,” at least before she got COVID-19.

“My doctor was like, ‘You’ll be fine. Just like, 2 weeks, stay in your apartment, and that’ll be that.’ So, to be safe, I quarantined myself for about a month,” Miolene told Healthline.

By the time her quarantine ended, Miolene had started to feel better.

But shortly afterward, she began to experience severe chest and back pain.

“I thought I was having a heart attack, so I went to the emergency room, and they did a lot of tests, and they basically just found everything was normal,” she said.

Now more than 6 months after she first developed COVID-19, Miolene is no longer positive for the virus but is still struggling with debilitating fatigue, chest pain, and back pain.

“Most people believe that if you’re young and you get it, you’ll have a cold and then you’ll be fine, but that’s anything from the truth,” she said.

“It’s changed my life. Every morning, it’s something that I wake up with and have to deal with and get through the day with,” she added.

Glatter has seen quite a few patients who report symptoms weeks or months after their initial COVID-19 diagnosis, including patients who experienced relatively mild infections at first.

“I’ve seen a fair number of patients that come in with mostly post-viral fatigue, muscle aches, shortness of breath, chest pain. Tingling, a lot of neurologic symptoms. Brain fog as well. And these symptoms continue on,” Glatter said.

Many lingering and recurrent symptoms may be caused by irregularities of the autonomic nervous system resulting from COVID-19, he told Healthline.

COVID-19 has also been linked to increased risk of blood clots, lung damage, heart damage, mental health effects, and other complications that may set people up for chronic illness.

While some potential complications are treatable, more research is needed to develop effective treatments for other long-term side effects and symptoms of the disease.

“When their oxygen levels are low, when they have pneumonia, when they have pulmonary embolisms or blood clots, we can certainly treat that,” Glatter said.

“But for people with daily fevers, muscle aches, chills, headaches, all these things that prevent them from returning to work in meaningful ways — there’s really little we can offer them,” he said.

The lack of answers and effective treatment options for long-term symptoms is demoralizing for people recovering from COVID-19 as well as for their treatment providers.

Miolene, for example, has seen nine different specialists, none of which have been able to pinpoint the exact cause of her symptoms or prescribe a treatment to clear them.

“It’s been a long haul of talking to different people, having them do tests on me, and then just having them say, ‘Yeah, I don’t know what’s wrong with you,’ and never being heard from again,” she said.

“The only type of long-term support that I have received is through the SWORD Health program, which I started in June,” she continued.

SWORD Health is a digital healthcare provider that uses virtual technologies to connect patients with physical therapists who specialize in musculoskeletal and pulmonary impairments.

Merin Shekitka, PT, DPT, is a SWORD Health physical therapist who has been working with Miolene to build up her physical activity and fitness level.

“I think the big thing is that we’re learning about this together, and that’s really how my relationship with Elissa has been. You know, this is all new for me as well,” Shekitka told Healthline.

“Just being there for her, and being a support for her, has been super important. Knowing that she has somebody with her along the way that’s helping guide her and be with her during this uncertainty,” she added.

Looking toward the future, Glatter expects that many COVID-19 survivors will need rehabilitative support to get back to their daily activities.

To aid patients’ long-term treatment and recovery, he said that more funds need to be invested in identifying effective treatment strategies and establishing centers of care.

“We need to develop post-COVID recovery centers of excellence, where we can refer people that are seen in the emergency room and seen in the office space setting, where we have specialists that can address their symptoms and do the research that’s necessary,” he said.

In the meantime, Glatter wants people to realize that long-haulers aren’t imagining their symptoms.

“Early on, a number of healthcare providers would see patients who are testing negative and continue to have symptoms and said it could be in your head,” Glatter said.

“Well, it’s not in your head. It’s real, and I think the time is now to address this and try to do what we can do to help people,” he added.