COVID-19 Never Truly Goes Away: Long COVID’s Debilitating Symptoms Uproots Lives

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Before Liza Fisher contracted the COVID-19 virus, she worked as a flight attendant, drove, and went to the grocery store with ease. All that came to a halt after the virus entered her body in early 2020. Like many others, she was quarantined, unable to see friends or family.

“It was scary,” Fisher told HCPLive. “I was isolated… Nobody knew anything. I was a science experiment from the start, I realized.”

Her symptoms were so severe she was eventually hospitalized in the ICU. After that, she spent 3 months in a rehab facility. For her, and so many others, COVID-19 never really went away, at least not the symptoms. Fisher’s symptoms from the acute infection started to fade but then she faced chronic illness immediately following. She likes to refer to the shift in symptoms as “symptom soup.”

After being out of the hospital for 3 months and still experiencing debilitating symptoms, she realized her symptoms would not go away—she had long COVID.

“And then that's when I started figuring out anything associated with it, like dysautonomia, POTS, MECFS, and all these other diagnoses I've now started to get,” she said.

During this time, she struggled with many other symptoms due to long COVID. Included among her laundry list of symptoms were fatigue, headache, nausea, indigestion, constipation, diarrhea, trouble falling asleep, trouble staying asleep, hyperosmolar hypernova, tachycardia, low blood pressure, and then high blood pressure. However, this was just the tip of the iceberg as Fisher also experienced allergic reactions, dysmotility, brain fog, executive function memory, anxiety, depression, neuromuscular spasticity, tremors, dystonia, neuropathy, loss of motor function in hands and feet, and a foot drop.

Like many, she experienced bouts of depression. Her first infection led to psychosis, which she still has PTSD from. She also experienced embarrassment with her neuromuscular spasms.

“It’s hard to continue to walk through life the way I did because even going through a grocery store can make me tick,” she said.

Despite her plethora of symptoms, Fisher felt healthcare providers did not take her seriously, with some interpreting her actions as the behavior of someone seeking pain medication. Even with positive COVID-19 tests, she was turned away from seeking care, questioned by providers over her medical records, and left with more questions than answers since nobody was aware of long COVID.

“It's like, ‘oh,’ [Long COVID] doesn't exist because, well, this doctor says it does,”’ she said.

Due to all her debilitating symptoms, she lost her job and had her health care insurance taken away when hospitalized. She switched from private health care to COBRA to Medicare, limiting her access to treatments.

Fortunately, Fisher had massive improvements in her long COVID symptoms. She had several surgeries, and she had to relearn how to walk, talk, and eat. She also used a wheelchair for 2 years before transitioning to several mobilization devices in orthopedic aids.

“So, I went from what we thought wasn't going to be able to walk and live an independent life to be able to live independent,” she said. “I can drive now, and I'm starting to work very slowly again, part-time.”

Now, Fisher leverages her harrowing experiences through her role on the Long COVID Alliance Executive Committee. She is committed to providing education on long COVID as a national healthcare advocate and yoga teacher.

Many people, like Fisher, experience life-impacting long COVID symptoms. A recent cross-sectional analysis of the Prevention Behavioral Risk Factor Surveillance System 2022 estimated the prevalence of long COVID symptoms among survivors was 21.7%; the most frequent symptoms were fatigue (5.7%), dyspnea (4.2%), and anosmia/ageusia (3.8%).¹ A multivariate logistic regression analysis found females, a body mass index ≥ 25 kg/m², lack of insurance, history of pulmonary disease, depression, former smoker, and sleep duration of < 7 hours per day were linked to greater odds of long COVID symptoms.

Long COVID’s Impact on Sleep

Now, 4 years since then-President Donald Trump declared COVID-19 a national emergency on March 13, 2020, it is time to address how long COVID impacts a critical necessity: sleep.² With it being Sleep Awareness Week, it is important to understand the sleep quality of COVID-19 survivors. Research has found approximately 40% of people with long COVID report sleep issues, such as insomnia, daytime sleepiness, waking up throughout the night, or not feeling refreshed in the morning.³

“People with long COVID very frequently have a description of hitting a wall, so to speak, [during] early afternoon,” Marc A. Sala, MD, co-director of the Northwestern Medicine Comprehensive COVID Center, told HCPLive. “This can include everything from just needing to close their eyes and kind of sit on the couch for a moment to actually [needing] to sleep. And so, to that end, people do very frequently report, middle to early afternoon napping.”

This is true for Fisher, who still needs to take naps due to her long COVID. The condition has negatively impacted other aspects of her sleep health, as she has trouble waking up in the morning and going to bed.

At first, she couldn’t get out of bed in the morning, forcing herself to, and felt in a “constant fog.” However, 3 years later and several treatments—including in different sleep studies for the NIH’s RECOVER—she got back on a circadian rhythm.

“I try to wake up by 6 am every single morning, but I don't necessarily get out of bed till maybe eight,” Fisher said. “So, I'm not really functional.”

She also struggles to go to sleep, but taking sleep pills, turning the lights off at a certain time, and taking a bath during a certain time of the day have helped her fall asleep.

“I had to rearrange my life in order to prioritize things so that I could sleep,” she said.

Despite these methods, it was difficult for her to stay asleep because she developed a neurogenic spastic bladder, which requires her to get up to get up to use the bathroom. She turned to Botox injections for relief, which ultimately took her 2 years to receive coverage on. She now can receive 8 hours of sleep a night but will not usually sleep for over 4 hours in a row.

Luckily for Fisher, she is no longer depleted of energy, but she is not at the same energy level she was before her first infection.

“You're kind of like always just like hoping to be half a battery of what you were,” she said. “A good day is like 75% battery.”

Limited Data Exists on What Goes on the Brain to Affect Sleep of COVID Survivors

Logan Schneider, MD, a sleep medicine specialist from Stanford Medicine and the American Academy of Neurology, told HCPLive the neurological effects of long COVID on sleep is currently “conjecture.”

Investigators thought perhaps there was a relationship between long COVID and the onset of persistent sleep disorders, such as insomnia or hypersomnia, due to the encephalitis lethargica epidemic back in the 1920s that occurred because of brain inflammation and damage to cell networks that either caused sleep or wake. They hypothesized maybe this was occurring again, since many people with COVID-19—and long COVID—had neurocognitive deficits.

Except, research suggests sleep disruptions are not “uniform” from one individual to another, Schneider explained.

“The epidemiology isn’t really suggesting a profound and persistent dysfunction that is separable from things like mental health issues, or the debilitating nature of long COVID itself, rather than a primary neurologic dysfunction causing insomnia, or hypersomnia, or any of the other sleep disorders that we have, like circadian rhythm or RVD, when behavior disorder, things like that,” Schneider said.

Schneider pointed out how it could be tricky to detect sleep problems because neuronal bundles could be difficult to pick up on structural MRI in edges, and there are not enough sleep disorders to isolate and establish specific diagnosis markers.

“So, it's hard to say, ‘well, biologically, these people are like changed and having sleep disorders specifically related to COVID and or long COVID mechanisms,’” Schneider said.

Right now, it seems like long COVID occurs due to increased inflammation. During an ongoing inflammation, particular chemicals secreted during inflammatory processes can make people feel fatigued. This is like when people get sick—they sleep more due to inflammatory molecules or proteins telling the body they are sleepy or fatigued.

“This is not a direct brain destruction targeting pathway to sleep and wake,” Schneider said. “It seems more complicated than that.”

Schneider explained how now investigators are discovering people with long COVID have structural changes in the brain.

“I think what they're drawing connections to is this encephalomyelitis biologic encephalitis, chronic fatigue syndrome narrative,” Schneider said. “Fibromyalgia might be explained somewhat by these mechanisms, maybe a subset of those patients, but in essence, continuing to delve into what the actual mechanisms are.”

Treating Sleep in Long COVID Patients

It can be difficult to diagnose and treat sleep disorders in individuals with long COVID since they can “mimic” and “mirror” other conditions, Andrew Namen MD, FCCP, FAASM, associate professor of pulmonary, critical care, allergy, and immunologic diseases at Wake Forest University, told HCPLive. Patients may have pains due to their long COVID, such as joint pain and breathing disorders that lead to brain fog.

“Sometimes you wonder how much of that is related to the direct effects of the brain and the body, or is it in part related to their sleep?” Namen questioned.

As for people with pre-existing sleep disorders, such as obstructive sleep apnea or restless leg syndrome, long COVID only worsens these conditions. For instance, among people who already have sleep apnea, long COVID could increase cognitive challenges and they may have worse overall sleep quality measures.

“Addressing those other sleep disorders is as important during your struggles with COVID-related sleep challenges and should be addressed,” Namen said.

Even though long COVID still affects many lives, some sectors of health systems dealing with long COVID closed.⁴ However, there are still efforts dedicated to supporting the research for long COVID. Some examples of this include the NIH dedicating half a billion dollars to studying the aftermath of COVID-19 and creation of the Northwestern Medicine Comprehensive COVID Center to learn more about long COVID.

Furthermore, the Long COVID Alliance hosts a space for organizations and individuals to collaborate and come together on pieces of legislation, host webinars, and pull funding from other organizations to host spaces for physician education. The organization has a lot of research and clinical guides and protocols developed and supported by other nonprofit and advocacy groups.

With long COVID now a part of many people’s lives, people may need to adopt specific lifestyle modifications to improve their daily functioning. For instance, if patients advocate for a certain pace at their jobs, it could help them function at work with their fatigue. Moreover, if they face a lot of brain fog, pacing workouts could help prevent malaise.

“These are just a couple of generalities we sometimes advise people on, but it really has to be [a] personalized strategy,” Sala said. “You have to hear the story.”

References

1. ^{Hejazian SS, Sadr AV, Shahjouei S, Vemuri A, Abedi V, Zand R. Prevalence and Determinants of Long-term Post-COVID Conditions in the United States: 2022 Behavioral Risk Factor Surveillance System. Am J Med. Published online February 20, 2024. doi:10.1016/j.amjmed.2024.02.010}
2. ^{COVID-19 Emergency Declaration. FEMA. March 14, 2020. https://www.fema.gov/press-release/20210318/covid-19-emergency-declaration. Accessed March 12, 2024.}
3. ^{Understanding Sleep Problems and Long COVID. National Institutes of Health, COVID-19 Research. September 12, 2023. https://covid19.nih.gov/news-and-stories/understanding-sleep-problems-long-covid#:~:text=Research%20suggests%20that%20about%2040,feeling%20refreshed%20in%20the%20morning. Accessed March 12, 2024.}
4. ^{Kunzmann, K. No Golden Pills: Long Covid Clinical Research Faces Long Climb. HCPLive. December 20, 2023. https://www.hcplive.com/view/no-golden-pills-long-covid-clinical-research-faces-long-climb. Accessed March 12, 2024.}