Before March 2020, Christine Palmer would have described herself as “one of those moms you see jogging behind a stroller.” The Oregon native was an outgoing, active 42-year-old with “boundless energy.” She used to bike to her education job. She rarely felt sick.
That was before she came down with COVID-19, a completely new disease at the time, with no vaccine to protect her.
Long COVID has gone from being an unknown condition to one now recognized and protected by the Americans with Disabilities Act. It affects possibly millions of people all over the country, of all ages and backgrounds.
For Palmer, whose story is one of many, it wasn’t until June 2021 – after months of persistent symptoms – that she received her diagnosis of post-acute-sequelae SARS-CoV-2 infection, the scientific name for Long COVID.
Understanding Long COVID
Over the last two years, tens of millions of people all over the country have contracted COVID-19, and many have reported persistent symptoms long after their initial illness. The most common symptoms of Long COVID are fatigue and shortness of breath, but people can also experience nerve pain or tingling, headache, dizziness, changes in cognitive ability (“brain fog”) and more.
Palmer, for example, had to stop driving in 2021 because she got confused and couldn’t remember whether a red light meant ‘stop’ or ‘go.’ These days, she barely has enough energy to speak on the phone.
Currently, experts don’t know why some people get Long COVID and some don’t. The American Academy of Physical Medicine and Rehabilitation estimates that about 30% of people infected with the COVID-19 virus report symptoms for extended periods of time. But because the condition has only recently been defined, it’s nearly impossible to know exactly how many people have it.
As far as who may develop Long COVID, “the likelihood of getting Long COVID is unknowable,” for an individual person, said Aluko Hope, M.D., medical director of OHSU’s Long COVID-19 Clinic. Someone with mild COVID-19 symptoms is just as likely to experience Long COVID as someone who’d been hospitalized, he continued.
Treating Long COVID
Long COVID seems to work in two ways. First, it affects the way the body uses energy, which depends on the kind of activity you’re doing. If you’re taking a leisurely walk, a bike ride on a flat trail or standing for long periods of time, your body uses energy efficiently to fuel those extended activities.
But if you’re running a sprint, climbing several flights of stairs or otherwise need a ‘burst’ of energy, a less efficient – but more powerful – energy system kicks in.
For Long COVID patients, their bodies seem to function continuously in the inefficient ‘burst’ energy mode.
If someone is living with Long COVID, just walking to the kitchen for a cup of tea can sap their energy—because their body reacts as if they’re running a 100-meter dash.
Long COVID symptoms also seem to affect the autonomic nervous system, which controls bodily processes that are not consciously directed, such as your heartbeat, digestion and breathing.
At OSHU’s Long COVID clinic, specialists work with each patient holistically, considering their day-to-day needs and symptoms, Hope said. Every patient has different clinical needs, like physical or cognitive therapy; they also have different day-to-day priorities, whether it’s caring for children, going to work or doing their hobbies.
“We don’t have a good idea of how to manage Long COVID yet,” Hope said. But because it’s similar to other chronic illnesses, “we aim to help people manage their symptoms, give people skills for how to better minimize complications and integrate the symptom management into their life.” These skills include patients learning how to trust their own energy levels and adapting to what they can and can’t do during the day.
Protecting yourself
Because experts still aren’t sure of the underlying disease process of Long COVID, and because there’s currently no way to tell if someone is more or less susceptible to it, the best way to protect yourself from Long COVID is “not to get COVID,” Hope said. That means wearing a tight-fitting, multi-layer mask (N95s and KN95s are best) in public indoor settings, avoiding large gatherings, and most importantly, getting vaccinated and boosted.
Christine Palmer has a message for others: “Long COVID is not worth it,” she said. “It can lead to debilitating symptoms, which for me, left me unable to work, drive, or even clean my home.”
She has hope, though. After getting vaccinated and boosted, Palmer’s symptoms improved for a short time. “I like to think that if I can feel better, even for a time, there is hope for healing and treatment. If we get vaccinated, wear masks when needed, and modify our behaviors when cases are high, we can get through this,” she said.
Getting vaccinated and boosted is the best way to protect yourself from COVID-19. Check out this list of free high-volume vaccination sites around Oregon. If you’re shopping for N95 or KN95 masks, check out this blog on how to avoid counterfeits.