Amy Watson, a preschool teacher in Portland, Oregon, had been fighting a low-grade fever for almost a month when doctors started talking to her about cancer.
It was April 9, right around the time that coronavirus cases were peaking across the United States. She’d fallen ill in mid-March with a fever and flu symptoms, just two days after the state had shut down schools. At that point, as we all are now deeply aware, there was a woeful shortage of coronavirus tests, and only frontline workers and patients sick enough to be hospitalized could get one. Watson called an advice nurse, who told her to assume she had the coronavirus and isolate for two weeks.
Most health guidelines at the time stated that “mild” cases of Covid-19 should only last around two weeks. But Watson’s illness lingered. So her doctor thought that having a fever for as long as she did—79 days, ultimately—was a sign she could have leukemia or lymphoma.
She got a comprehensive workup that day and tested negative for everything. She finally became eligible for a coronavirus test a month after first getting sick, because she has asthma. Her test, unsurprisingly, was positive.
Watson is among a growing number of coronavirus survivors who have found that a range of unsettling and seemingly inexplicable symptoms are persisting months after contracting Covid. In addition to fever, these symptoms have included a racing pulse, ongoing chest pain, chronic cough, dizziness, and mysterious tingling sensations.
In the isolation of quarantine, and with few concrete answers, coronavirus survivors are desperate to understand more about their symptoms and how long they might last, and to talk to others who have gone through a similar ordeal. In response, some have created online support groups where they can connect with others in the same boat.
Watson created the Facebook group Long Haul COVID Fighters in late April, a full two months after she first got sick. At that point, she says, she was feeling depressed and isolated. “I really hit a wall. I wasn’t getting better,” she told me. She wanted to find others like her out in the world and help them find support in a time of immense confusion. A banner on the group’s homepage reads, “Welcome. No, you are not crazy. You are not alone.”
The message resonated. Watson thought maybe a dozen people would join the group. Instead, it has drawn over 3,000 members from 58 countries. “The group has been so rewarding in just bringing people together, not just to commiserate but to share information,” she said. And that information could prove to be an unlikely DIY trove of valuable data for medical researchers.
Watson’s message certainly hit home for me. Around the same time Watson’s doctors were telling her she might have cancer, I was rounding out two weeks of what I was pretty sure was Covid in Brooklyn. I had what felt like a mild flu, plus the telltale shortness of breath. I had conducted a telemedicine appointment with my doctor, who prescribed me an inhaler and told me to self-isolate for two weeks. By the end of that time, I felt almost all better.
Then something strange happened: My toes started changing color. Every night, they’d become red, hot, and ungodly itchy. During the day, they’d be purple, as if they belonged to a corpse. Scheduling an appointment with a dermatologist for an unrelated foot problem in the middle of a pandemic felt ridiculous—hundreds of people were dying every day in New York at that point. But whatever this was—a rash? Gangrene? Creeping death?—got worse, causing many sleepless nights in which I would spray my burning feet with ice-cold water at 3 a.m. So I made the appointment with my dermatologist.
She suggested that my situation could be related to my presumed bout with Covid. We all now know about “Covid toes,” but at the time it seemed like a stretch to connect the two. My dermatologist was part of a group of skin doctors compiling a national registry of skin conditions related to the coronavirus, and they’d discovered a number of patients suffering symptoms similar to mine.
Over the next weeks, my dermatologist experimented with various combinations of ointments to address the problem, which seemed to be imitating a condition called chilblains. I got a slew of blood tests to rule out diabetes and lethal blood clots. Throughout this torturous process, I was lucky that I had an available, thoughtful dermatologist who did her best to make educated guesses about what the hell was going on. But it’s also clear that she was, like most of the medical profession amid this pandemic, driving blind.
I scoured the internet for stories of other people who had similar symptoms. Most articles about Covid toes said it only lasted a few weeks. My doctor said the longest she’d heard of someone having this was six weeks. I’m going on eight weeks. “We don’t really know,” she told me in one of our telemedicine appointments, accompanied by an apologetic shrug.
“It’s very difficult because no one really can say with certainty what will happen,” said Dr. Mady Hornig, an immunologist and professor of epidemiology at Columbia University, who is researching Covid-19’s connections to long-term conditions like myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. She herself has also experienced some of these more “oddball symptoms” for over eight weeks, she told me. For patients and medical professionals alike, the uncertainty and lack of information about the disease can be “extremely frustrating.”
Though I can hardly compare my symptoms to the experiences of people on life support or dying from the coronavirus, they have been bewildering, confusing, and sometimes scary. I’ve had to limit my neighborhood strolls to avoid activating “fire feet,” as I’ve taken to calling them. All my decisions revolve around this condition, including whether or not to go to the anti-police protests exploding across the country.
Support groups like Long Haul COVID Fighters have been a rare solace. The group members “really empathize with each other and can be there for each other,” Watson told me. “And there are people who are like, ‘Hey, I’m getting better, but I want to be here for others, and here’s my phone number, you can call me any time, day or night.’ I’ve never seen that before on the internet.”
There are a dizzying number of posts on the group. Many have to do with symptoms, asking if others are experiencing the same ones—everything from tingling to a frantic pulse to swelling and bruising. People report having chest pain, reflux, weight loss, post-viral fatigue syndrome, and, yes, purple toes. Many long-haulers are dealing with the disorienting self-doubt that comes when their symptoms are dismissed by doctors and loved ones. And others are “success stories” of members who have finally turned the corner 10, 11, or 12 weeks into their illnesses.
The range of posts speaks to the broad spectrum of physical and emotional effects of being sick for such a long time, with a disease that’s both so little understood and so isolating. It’s common to see a post that reads, “Please at least one person show up and say they are 100 percent symptom-free!”—people are desperate for a sliver of hope, a sign that being weak, exhausted, sick, feverish, rashy, itchy, and short of breath isn’t a permanent part of their lives.
“I feel so alone and sad,” read one post from last week. “Sometimes I wonder if I am slowly dying?” reads another. “What is everyone doing to keep from becoming super depressed?”
Others are less serious, though no less pressing: “Has anyone tried to have a beer? What happened?”
There are lots of questions about antibody test results, whether we can trust them, and how long people are actively contagious. (We don’t really know, but it’s unlikely people are infectious after two weeks, Hornig speculated.) There are many suggestions for homespun treatments people have tried, including taking vitamin C, electrolytes, antacids, and even eating Dutch cheese. Watson says she and the other moderators are careful to label such recommendations as “personal opinion” to avoid spreading potential misinformation, and require that members add a disclaimer for patients to consult a doctor before trying any experimental treatments.
The moderators try to keep politics out of the group, an almost Sisyphean task given the myriad ways politics plays into the crisis we’re in. Watson strongly opposes Donald Trump and backs policies like Medicare for All, and says that conversations about health care access “are conversations we need to have.” At the same time, “We’re trying to keep the conversation around recovery, and not, ‘Do you think this is a bioweapon?’” she said. “It’s challenging, for sure.”
As membership has grown, she’s recruited other members to help her manage the group, including approving member requests and categorizing and moderating posts. Still, she spends five to six hours per day on the group. With school out of session and little to do as she continues to rest at home, she has welcomed the distraction. “Creating the group has both helped me immensely and has given me a purpose while recovering,” she said.
“I was beginning to lose hope until I found that others were out there just like me,” said Shannon Massa, a grandmother from Stockton, California, and a member of Watson’s group. Eight days into her illness, she went to the hospital for chest pain and “a cough that felt like I was being hit with a sledgehammer in the chest,” she told me. The emergency room doctor was condescending and dismissive. “He walked in the room, chart in hand, looked at me and said, ‘I can tell you right now you don’t have the coronavirus.’”
When she still had a fever weeks later, the first thing her primary care doctor suggested was that perhaps her thermometer was broken. “The weeks rolled on,” Massa said. “We did test after test, the most memorable being checking for Valley Fever. Thankfully, we stopped short of a spinal tap, because as more articles and reports became available, my doctor realized that it was indeed ongoing symptoms left from my bout with coronavirus.”
Such experiences are extremely common in the long-haulers group, as patients discover the latest research and information in real time with their doctors. “We don’t know what the long-term aftermath is going to be,” said Hornig. “There’s all sorts of unknowns. You can’t just google what’s going to happen a year from now.”
One thread on the long-haul Facebook group, for example, details the worst advice different members have gotten from doctors: “Stop worrying and have a relaxing bath”; “It’s anxiety, have a pill”; “It’s allergies”; “I think it’s your new dog”; and, most bizarrely, “Go home, drink one box of Gatorade, then look at the mirror and say to yourself, I am fine.”
As more people experience long-term symptoms, they’ve flocked online. The largest Facebook group is the 50,000-strong Survivor Corps, whose founder also started a nonprofit to advocate for plasma research. A group called Body Politic established a private Slack group for coronavirus survivors. The Slack group includes various channels where users can talk about their symptoms (under #neurological, #circulatory, #gastrointestinal, and the like, or by how long they’ve been ill: #30days, #60days, #90days). Body Politic’s resources include a crowd-sourced Excel spreadsheet of symptoms, backed up by peer-reviewed articles. There’s also a home-care coronavirus kit, created by a UX designer in Canada, that covers everything from well-known coronavirus symptoms to what blood tests to ask your doctor to run if you think you have had Covid.
Last week, Body Politic released the results of a survey it had conducted of 590 Covid patients in its Slack channel. The data is, of course, self-selected and far from randomized—the respondents to the survey were overwhelmingly white women—but it provides some of the most comprehensive data I’ve seen of long-term coronavirus symptoms and the other medical conditions people have that might affect the course of their illness.
The data tracks with what many members of the Facebook group have reported, including a wide range of symptoms. (It doesn’t mention Covid toes, but between 10 and 15 percent of respondents have skin tingling/sensations.) “Recovery is volatile, includes relapses, and can take six or more weeks,” the survey results state. “At the time respondents took the survey, 90.6 percent reported not being recovered and were, on average, on day 40 of experiencing symptoms.”
There also appear to be some correlations between a long Covid recovery time and other chronic health issues. Many with longer Covid recoveries, like Watson, have asthma, and others in the survey report conditions like vitamin D deficiency (13.4 percent), followed by acid reflux disease (10.5 percent), and preexisting auto-immune diseases (10.5 percent). In my own social circle, a friend and I are the only ones who both have some immune issues and have had a long recovery. The same goes for both Watson and Hornig.
Hornig underscored the importance of studying how long-term coronavirus symptoms might map onto other chronic health conditions, such as ME/CFS, Epstein-Barr disease, and mononucleosis—and doing so now, as they unfold among a historically large number of people at the same time. Meanwhile, a growing number of patients like Watson and others suffering long-term symptoms are now being diagnosed with post-viral fatigue syndrome. She is finally starting to feel better: “I can go some days without a nap, which I guess is progress.”
Six months into the pandemic, there has been some promising research on these long-term symptoms. On May 13, Mount Sinai opened the first post-Covid care center in the country. And Hornig and others are making headway in their own studies. But there’s still a long way to go. In my two months of searching, I’ve yet to find someone else, online or off, with fire feet.