Symptoms of Long COVID

The people we spoke with described a wide variety of symptoms that they associated with long COVID. These included symptoms affecting their breathing, heart, muscles, energy levels, digestion, vision, sleep, and ability to concentrate, think, and hold on to information. Some people lost their sense of taste and smell or smelled things that were not there (phantom smells). Several people found they could not eat or digest food normally. A few reported allergic reactions they had never had before, while others noticed unusual hair loss. Our participants also told us that doctors were often unable to make sense of their symptoms using conventional diagnostic methods.

 

Combinations of Symptoms

Many of the people we spoke with said they had strange combinations of symptoms, and that these could come and go without obvious reason. As Melissa told us, “I just go up two stairs and then, ‘Whew!’ … and I never used to be like that … I have a persistent cough … my hair … is just falling out … and then the pain, my body just aches for nothing.” Kristen listed a persistent low-grade fever, “back pain … headaches, fatigue, brain fog, forgetfulness and anxiety” among her symptoms. She “went for so many appointments with doctors and bloodwork, and they just kept saying … everything was normal.” To Nicole, “It seemed like every few weeks I would develop a new symptom and it seemed unrelated … “I had acid reflux that came on, I had an eyelid that wouldn’t stop twitching … I started losing words … I developed neuropathy, so tingling in my hands and feet.” Wayne told us, “If I speak for any length of time … I have to go and lie down and have a nap.” He also developed “tingling and sometimes pain” in his legs and feet, and “frightening vertigo.” His sense of smell and taste were also affected.

 

Common Conditions

While long COVID can cause a wide range of ongoing health problems, several conditions were common among our participants. These included:

• Cardiac issues such as heart palpitations (fluttering or fast heartbeat), and postural orthostatic tachycardia syndrome (POTS) which causes your heart to beat faster than normal when you go from lying down or sitting to standing up;
• Post exertional malaise or (PEM) which is extreme fatigue after even minor physical or mental effort;
• Vision problems such as extreme sensitivity to light, blurred vision and an inability to look at screens; and,
• Cognitive issues such as brain fog or an inability to concentrate, remember things or process information.

 

Cardiac Issues (Heart Problems)

A number of our participants developed heart problems after having COVID. Several, like Ruth, noticed “a rapid heartrate … even sitting down.” Kari explained she “could be just standing at my kitchen counter and my heart rate would go through the roof for no reason … I went through all the tests … and his conclusion was, structurally and physically your heart is fine … we just don’t know why COVID patients are having these tachycardia rhythms.” Louise said, “my heart rate just went up and stayed up all day, even though I was sitting on the couch … It would just stay up at about between 90 and 100 all day. So that was kind of scary.” Maggie experienced something similar. She told us, “I realized that my heart rate was really high, just sitting down … Called my doctor again and he … sent me to Emerg where they said that they thought that I had a post COVID myositis or inflammation of the muscles.”

Katherine and Lesley both developed premature ventricular contractions or PVCs. PVCs are extra heartbeats that disrupt the normal heart rhythm. As Lesley explained, “it feels like a massive sort of heart pounding that happens … like a big thud in your chest. But everything appears normal on an actual cardiogram. On any … of the cardiac diagnostics, I look like an exceptionally healthy 51-year-old woman. For Katherine, PVCs were also “something brand new … post-COVID infection. She will now “have to see a cardiologist regularly” for the rest of her life.

 

Post Exertional Malaise (PEM)

Many of the people we spoke with experienced post exertional malaise, or extreme fatigue after even small amounts of physical or mental effort. PEM could leave people incapacitated for many days and some did not realize that trying to push through the pain and fatigue actually made the condition worse. As Paulina explained, “I can’t do anything. I even I have to sit when I shower. After I shower I usually take a nap because I’m so wiped.” Or, as Carrie 1 told us, “I’m completely housebound. I can only leave the house for essential activities and then I have to have three days rest after.” At first, Jennifer 1 did not realize that she had to account for all activity in her daily energy budget. She noted, “Just the simple things of brushing your teeth, your daily hygiene all have to be accounted for… I wasn’t really thinking about that … It wasn’t until I saw an occupational therapist that she was like, ‘You need to factor those into your pacing. It can’t just be your other activities that you used to do.” Louise noticed that, “however long the activity is, if I don’t have a day off right afterwards, it takes me twice as long as the activity to recover.”

 

Vision Problems

Many of the people we spoke with were experiencing some kind of problem with their vision. These vision problems often also caused headaches. Manali noticed “sensitivity of the eyes.” She explained, “So if I’m on my screen and working and if the headaches would come it wouldn’t go. So even if you’re popping Tylenol and Advil the headache stays. So the only way is that you don’t – you know you rest your eyes out. So that was a big problem.” Tanya also couldn’t look at screens. She told us, “Scrolling on a computer screen or even watching a television program, just the movement of what’s going on, on the screen, I find all of that very bothersome.” Katherine said, “I had my eyes tested in October of 2021. And now we’re in February of 2022, and my vision had changed completely. I have difficulty reading … I can’t use the computer without reading glasses, because I can’t see the prompts.

 

Cognitive Issues

One of the most widely shared symptoms our participants experienced was some kind of cognitive issue. This included brain fog, memory loss, trouble finding words, and mental fatigue. Chris found he would experience brain fog when he tried to do too much or felt overwhelmed by his other symptoms. He explained, “I can’t focus on a screen, on a book or even a thought. I have trouble finding the precise words sometimes and I find this sort of brain fog type stuff happens either if, you know, I’ve pushed myself particularly hard one day or if I’m having a day where all of these symptoms are flaring up.” Cathy lost the ability to read for a year because of the brain fog.” She continued, “The brain fog issue is keeping your focus on what you’ve just read. So it’s very difficult. It’s difficult for me to do my banking – online banking. It’s difficult for me to fill in forms. Everything like that. Because I have to work really hard to keep my focus. But I am happy to say the ability to read, it’s coming back.” Kari also struggled with “the brain fog, the lack of ability to focus.” She told us, “I can’t find words when I want them and I mean, I have my nursing and I can’t think of medical terms quite often and yeah. I just, I feel stupid, is the best way to explain it. You just feel dumb … I’ll be in a conversation sometimes and completely forget what I’m talking about mid-sentence.”