On a recent morning, Monica Yepis walked forward step by step, her sneakers striking a regular rhythm on the belt of a treadmill at a local rehabilitation center.
Though each footfall looked normal, the Chula Vista resident said that keeping up the pace meant pushing through pain over and over again.
“It feels like my feet are so swollen inside my shoes that they hurt to walk on, but my feet are not swollen, it’s the neuropathy,” Yepis said.
Since COVID-19 put her in a hospital bed in early December 2020, Yepis, 60, has struggled with nerve pain in her hands and feet. More than two years after she spent six weeks sedated and on a ventilator, she’s still fighting to overcome stubborn symptoms of her illness.
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If she’s not in the rehabilitation gym at Sharp HealthCare, she has learned to avoid closed-toe shoes all together. For years now, she has worn flip-flops whenever possible.
“When I sit down, I have to pull my pants up because, when they touch my feet, it hurts,” Yepis said.
And neuropathy — pain, numbness or weakness due to nerve damage — is only one of the symptoms that she continues to experience. Lung capacity at 71 percent, she still needs supplemental oxygen from a wheeled steel tank when she exercises. Her balance and memory also have not returned to pre-COVID levels.
Symptoms lasting three months or longer are called long COVID or post-acute sequelae of SARS-CoV-2 infection (PASC). More than 200 lingering symptoms have now been associated with the debilitating condition.
Some of the most common of those symptoms are shortness of breath, fatigue and fuzzy thinking that many call “brain fog,” but others are more rare, such as postural orthostatic tachycardia syndrome, a rare and difficult-to-diagnose condition that affects blood circulation.
Researchers are even exploring signs that previous coronavirus infection may increase one’s risk of diabetes.
And there is plenty of evidence that there are millions like Yepis out there, trying to come back from long-term debilitating injury.
Results from a regular nationwide survey published by the U.S. Centers for Disease Control and Prevention estimate that between 4.8 percent and 5.9 percent of the nation’s 258 million adults have experienced COVID-19 symptoms lasting three months or longer so severe that they limit daily activities.
Though the CDC cautions that these surveys aren’t perfect, if they’re anywhere near the mark, that’s between 12 million and 15 million Americans who have struggled with life-altering long COVID symptoms.
Surveys, which rely on respondents to accurately convey their COVID history, estimate that about 10 percent of people who have ever been infected end up developing symptoms that last three months or longer.
But even the CDC can’t quite get behind that figure, noting in a 2022 analysis of health care records that 38 percent of people formally diagnosed with the disease had lingering symptoms compared to 16 percent of those who were never formally diagnosed.
Survey results, though more subjective than health record analysis, do show that long COVID is becoming less common.
When surveyed in June 2022, 35 percent of Americans who previously had COVID-19 said they had experienced symptoms lasting longer than three months. That number fell to 27 percent in February, indicating that fewer of those who were recently infected had long-lasting symptoms than was the case in the past.
The trend is also visible when surveyors asked respondents whether they were currently experiencing long COVID symptoms at the time of the survey. About 19 percent said they were currently long haulers in June 2022 compared to 10.8 percent in February.
California is estimated to be slightly below the national average at 10.3 percent.
Clinicians are noticing this change in their daily work.
Dr. Melissa Nardi, an associate medical director at Scripps Mercy Hospital in San Diego which helps run the health system’s COVID-19 recovery program, said that true prevalence of long COVID is always evolving because many of the symptoms are vague, meaning that doctors and patients may differ in their individual assessments.
What does seem to be clear on the front lines, though, is that the more recent variants and subvariants of the SARS-CoV-2 virus are producing a different profile of long COVID in the community.
“It does seem like the symptoms that they’re having today are less severe,” Nardi said. “You know, we’re not having as many patients that are on oxygen, but we are still having patients that have a lot of shortness of breath.”
Dr. Jignasa Puri, another Mercy physician in the COVID recovery program, concurred.
“We are seeing patients that developed long COVID in 2022, but definitely less severe symptoms than someone that has experienced COVID in 2021 or prior,” Puri said.
Treatment, though, is not a uniform process.
Kathleen Kennedy, a respiratory therapist and manager of the the COVID recovery program at the Allison deRose Rehabilitation Center where Yepis does her physical therapy, said she has learned to help her patients set more reasonable expectations in cases where recovery is slow.
“You have to kind of rewire what their idea is of getting better,” she said. “We have this idea of a cold or bronchitis being over quickly.”
Patients with long COVID will also vary in their own perceptions of their illnesses with younger people who were more fit before they got sick arriving with significantly more ambitious goals.
“Older people who have had some type of medical issue before COVID, you know, they seem to be able to handle some of these symptoms whereas somebody that’s young, they’ve never really experienced anything serious before, so these long symptoms kind of blow their minds,” Kennedy said. “They’re extremely anxious, and even if they can do what I would consider to be a lot of exercise, they’re not doing their marathons or, you know, those 10-mile hikes, and that is very anxiety-producing for a young person.
“They want to be back where they were before COVID.”
The most frustrating part of the long COVID journey for patients like Yepis and for clinicians is the lack of solid answers.
When patients arrive with unexplained symptoms, they’re put through batteries of medical tests to rule out other potential causes.
“It’s frustrating because they’re so symptomatic and yet their testing comes back pretty good, echocardiogram’s normal, chest X-ray, CAT scan, all that stuff is normal, and yet they’re super symptomatic,” Kennedy said.
Nardi and Puri said that brain fog, a condition that Harvard University describes as when a person’s thinking is “sluggish, fuzzy and not sharp,” has been particularly frustrating to treat, especially when those experiencing it may be highly educated and used to finding quick insight that has helped them build successful careers.
“These very high-functioning individuals, we’ll send them for a pretty significant three-hour neurocognitive testing to see if there is an issue that’s causing their brain fog, and the test comes back completely normal,” Nardi said.
Many, Puri noted, are sent to Scripps’ brain injury program in Encinitas to participate in neurocognitive therapy that seems to help.
“A lot of patients would say that they’re getting better with the techniques and treatment options in the brain injury program, but they are not 100 percent better, they still have good days and bad,” Puri said.
As a recent research article from Scripps Research Institute and other authors attests, evidence has been found documenting novel coronavirus’ impact on myriad bodily systems.
“Multiple studies have revealed multi-organ damage associated with COVID-19,” the report states. “One prospective study of low-risk individuals, looking at the heart, lungs, liver, kidneys, pancreas and spleen, noted that 70 percent of 201 patients had damage to at least one organ and 29 percent had multi-organ damage.”
But linking particular observations to helpful treatments has been slow going.
On the front lines, trying to help individual patients like Yepis day in and day out, ordering test after test that fails to explain the long-term suffering they’re witnessing, many believe that real answers will only be found by looking at the microscopic changes that this virus has caused at the cellular level.
“I think it’s becoming a bit more clear that whatever the injury is, you know, it’s happening at the microscopic level, because our echocardiograms, our CTs our MRI are not finding a lot,” Nardi said.
For Yepis, though hope still exists, it hard not to feel like progress will remain too far away to achieve.
“I remember my lung capacity was like 51 percent when I was in the hospital, and now it’s 71 percent, so it’s improving, but it’s going really slow,” Yepis said. “I plateau and then fall back down for a couple of months, it’s just a roller coaster trying to get better.”