What are the symptoms of long COVID? Canadians suffering share their experiences
When her family of three came down with COVID-19 last December, Kim Ashbourne got by with a mild case while her partner and school-aged son suffered from the classic symptoms.
She couldn't have guessed at the time that she'd be dealing with post-COVID symptoms almost a year later – symptoms so severe, she has not returned to work, nor to most of her favourite pre-COVID activities.
Before she tested positive for COVID-19, she’d led an active lifestyle that included hiking, working and attending university.
"And I had to basically drop everything," Ashbourne told CTVNews.ca in a telephone interview on Wednesday.
According to data from Statistics Canada, approximately 14.8 per cent of COVID-19 patients suffer from symptoms at least three months after an infection – a condition known as long COVID.
These symptoms can fade within months or persist for years after an infection, and can even disappear, only to reappear later. They can occur in both unvaccinated people and people vaccinated against COVID-19, like Ashbourne and her family.
While it's hard for anyone to say what the 20-, 10- or even five-year outlook for people who suffer from long COVID is, the U.S. Centers for Disease Control and Prevention report most patients' symptoms slowly improve with time. Researchers and medical professionals have now had two years to catalog the most common symptoms. And the list is long – more than 100 symptoms long, according to Health Canada.
The most common symptoms include fatigue, memory problems, sleep disturbances, shortness of breath, anxiety and depression, general pain and discomfort, difficulty thinking or concentrating and post-traumatic stress disorder, though some patients suffer from other neurological, vascular, pulmonary and cardiac complications.
Ashbourne checks many of these boxes. Within weeks of recovering from her initial infection, she began to suffer from intense fatigue, memory impairments, poor concentration and difficulty walking. Her legs grew numb and tingly, and one of her feet dragged. By the end of her first day back to work after the initial COVID-19 infection, she couldn't lift her arms.
"I talked to a few different doctors early on because we didn't really know anything about long COVID at that point," she said. "I was worried I was having a stroke or something."
Eventually, she was diagnosed with long COVID, post-exertional malaise and COVID-induced functional neurologic disorder, a nervous system disorder that can affect patients' ability to move, swallow, see and hear. She lost the ability to work, hike the hills and forests of Vancouver Island and be the parent she wanted to be. A short walk around her neighbourhood could trigger two or three days of intense fatigue. She also struggled with depression and feelings of isolation.
"There has definitely been grief in not being able to hold on to the life that I had and there's stress," Ashbourne said. "It's also very difficult because you do become socially isolated (due to) the level of fatigue, my inability to be mobile, various reasons. I was spending a lot of more time by myself than I had done previously."
Despite feeling isolated, Ashbourne is not alone. For patients who suffer from the most severe cases, performing daily activities most people take for granted – such as going to work, socializing, exercising and doing household chores – becomes very difficult, if not impossible.
Dr. Mark Bayley knows this all too well. Dr. Bayley is the medical director of the Toronto Rehabilitation Institute, and a lead physician at the institute's long COVID rehab clinic. He is part of a multi-disciplinary team that helps patients try to recover from long COVID using a symptom-based approach.
"We know that everybody has a different presentation of their individual symptoms and individual problems, but the net effect of those symptoms on many of them is that they cannot do their usual activities," Bayley told CTVNews.ca in a telephone interview on Thursday.
He said part of the reason why there are so many documented symptoms is that, in some patients suffering from long COVID, the virus seems to exacerbate pre-existing or underlying conditions that may not have caused problems for patients before they became infected.
"This is the challenge we face, is it that we know that it can make things worse for sure," he said.
"For example, we know that people who had pre-existing depression or anxiety were worsened by COVID, and there is a physiological reason for that. We know that inflammation can interfere with your brain's ability to release chemicals that are important for your mood, and for calmness and anxiety."
There is no single cure for long COVID. So Bayley and his colleagues – including occupational therapists, physiotherapists, cardiologists, psychotherapists and other specialists – work with patients to help them minimize and overcome their unique symptoms.
This is something Ashbourne is working on with her own team of specialists at the Island Health Post COVID-19 Recovery Clinic in Victoria, B.C. With help from a physiotherapist, an occupational therapist, nursing staff, social workers and a clinical physician, she's starting to gain control over her symptoms. She doesn't know what the ceiling for her recovery is, or when she'll reach it, but she's hopeful enough to keep working toward it.
"It is definitely a long-term prognosis for me and for a lot of people, there's just no question," she said. "It could resolve three weeks from now, or in three months or three years. I do see some improvement, for sure."
In Sudbury, Ont., nurse Stacy Thompson is fighting a similar battle, albeit with her own unique set of post-COVID symptoms. Like Ashbourne, Thompson, her partner and their two children were infected with COVID-19 last December. While her family suffered from mild symptoms, Thompson was hospitalized for four days with severe shortness of breath and heart rhythm irregularities.
Within a few weeks of testing positive for COVID-19, Thompson had grown so weak, she couldn't walk without leaning on walls and furniture. She began to experience chest pain after light exertion. She lost her appetite, her strength and her ability to balance. She became winded easily, and developed weakness and numbness on her left side. She suffered from brain fog, depression and suicidal thoughts.
"Around Christmas time, I had numbness to my left side, and weakness," she told CTVNews.ca in a telephone interview on Thursday. "But I was in such a brain fog that it didn't click to me that I should have gone to the hospital to make sure I wasn't having a stroke."
Thompson's doctors ran a battery of tests over the course of several months. They eventually diagnosed her with long COVID, as well as COVID-induced depression, left-side nerve damage and postural orthostatic tachycardia syndrome (POTS), a condition that causes an abnormal increase in heart rate when patients transition from lying to sitting or standing.
Like Ashbourne and so many other long COVID patients, Thompson lost the ability to work, perform household chores and enjoy many of the activities she'd enjoyed before her COVID-19 infection.
"Everything was difficult," she said. "I had a very hard time with the idea of not being able to go to work and not being able to play with my kids and not being able to do what you normally do in a day."
Fortunately, her weekly rehabilitation sessions with cardiologists, physiotherapists and psychotherapists are beginning to pay off. Thompson is able to control her depression and POTS with medications, and says her cognitive symptoms and fatigue are improving.
She's even making plans to return to work as a registered nurse at Health Sciences North.
"My hope is that I will be able to return in the new year with minimal restrictions," she said. "The nerve damage to my leg and arm is probably permanent, but there is a chance that it could improve."
Thompson and Ashbourne are only two of roughly 1.4 million Canadians who have suffered from post-COVID symptoms. But their experiences demonstrate how, for all the diversity of those symptoms, so many long-COVID patients face the same challenges to living active, fulfilling lives.
"I am happy to share my story if it helps anybody else," Thompson said. "Because I felt very alone through this, but the more you read about it and hear the stories, it just makes you feel less alone."
This story has been corrected to reflect that Kim Ashbourne has a partner, not a husband, and some wording has been adjusted to correct transcription errors.