Type of symptom | Representative quotation |
---|---|
Tachycardia/hypotension | “Any time I rise or change position, my heart rate goes really high, 140 usually, and then my blood pressure drops … every time I stand up, every time I get moving. And then it causes dizziness, nausea, all those fun symptoms.” (F1) |
Dyspnea | “It would take me an hour to walk up the flight of stairs and back down … ‘cause I was so short of breath.” (F5) |
Exercise capacity | “I can go out to take the garbage bin down, and I sound like I ran a mile coming back into the house. I’m panting and my heart rate is just — it’s wild.” (F2) |
Sleep problems | “I’ll sleep for 20 minutes and then I’ll be awake … when you add that all up, it’s like 3 hours of sleep I’ve had, but all broken up.” (F10) |
Headache | “One of my goals is I want to have a day without a headache. I don’t even remember what that’s like.” (F3) |
Pain | “I was just hurting, my muscles and joints were just hurting so bad, I could hardly move around … I was in so much pain all over, from the top of my head to the bottom of my feet.” (F9) |
Fatigue | “I could do … a kids’ puzzle for 15 minutes, and I would have to rest physically and cognitively for 14 hours and try again the next day.” (F6) |
Memory impairment | “I haven’t been able to remember what I had for supper the next day for a year.” (F4) |
Brain fog | “The memory fog is horrible. I used to have a mind of a steel trap, now I’m the Post-it note girl.” (F6) |
Word-finding difficulty | “I started losing words, so I forgot the word for spoon. I forgot the function of a spoon, I was trying to get food from a container into another container and I thought, ‘if only there is a tool that I can use to get this food from here to there,’ and I couldn’t think of a spoon.” (F7) |
Tinnitus | “I’ve got ringing ears since May of 2020 … falling asleep, that can sometimes be a problem … I know I’ve overdone it if my ears are extra loud ringing.” (F8) |
Phantosmia | “I thought I was crazy because I’d say to my husband, ‘I don’t know what’s wrong with me, I keep smelling this smell,’ and he’d go, ‘I don’t smell it’ …, it was bizarre and you think you’re losing your marbles because you’d smell this smell.” (F9) |
Anxiety | “I’m always scared I’m going to have a heart attack … . If I go too far, am I going to have a heart attack, and I’m by myself, so I try not to push too hard.” (F9) |
Depression | “It’s hard to try and stay optimistic … you can get down in the dumps and be like, [sighs] this sucks. You do get into that depressive state and ‘am I ever gonna get better?’ And if I’m not, what’s the point?” (F6) “You feel like you’re a burden to everybody. And it’s not — when you’re sick, and then you feel like you’re a waste of skin to people. It’s not a conducive thing for healing or getting better.” (F1) |
Suicidal ideation | “I probably would’ve killed myself at the rate I was going. ‘Cause it’s a steep decline.” (F5) |