It's not all in their minds.
An unknown but growing number of the 4 million U.S. COVID-19 patients say they can't shake symptoms ranging from fatigue to serious respiratory or neurological problems, often for months after diagnosis. The ailments are all the more challenging because patients say they often face skeptical families, friends, employers and even doctors.
Research is limited on these so-called "long haulers." New York City's Mount Sinai hospital appears to have the first post-COVID treatment center in the U.S.
A study of 143 patients in Italy out this month in JAMA Network found 87% of patients who had recovered from COVID-19 reported at least one lingering symptom, notably fatigue and trouble breathing.
Natalie Lambert, an Indiana University associate research professor, analyzed at least 1,100 responses to a poll about post-COVID-19 symptoms in the 81,000-member Survivor Corps Facebook group. More than half of the patients reported at least one of six symptoms, including the now-common fatigue and breathing problems.
The list also includes two – inability to exercise or be active and difficulty concentrating – the Centers for Disease Control and Prevention hasn't yet cited in its list of COVID-19 symptoms.
Karyn Bishof appears to have most of them.
On Saturday, the Boca Raton, Florida resident hit Day 133 of suffering with a staggering list of symptoms that includes: cough, chronic fatigue, memory issues, vision impairment, chest heaviness, drastic heart rate and oxygen changes, sore throat, hair loss, heart palpitations, reflux, nausea, dizziness, vertigo, rapid hot flashes, joint paint, full body itchiness, tremors, mild fever, dry mouth, excessive thirst, overheating with no fever, rash, sleep apnea, chest pain and tinnitus.
She started her own poll in the Survivor Corps group in June to see how many other so-called COVID-19 "long haulers" there were. More than 1,500 people said they, too, were still suffering and more than half said the symptoms lasted more than three months.
Diana Berrent, who created Survivors Corps in March while isolating at home with COVID-19, estimates more than half of the Facebook group members who no longer test positive still experience COVID-19 symptoms.
Lambert said patients face even more skepticism with symptoms affecting the brain. Those include problems with memory, sleeping, irritability or sadness. Patients said their doctors often attribute sleeping problems to stress.
More than 40% of respondents in Bishof's poll reported their doctors hadn't listened to or believed them.
Dr. Maja Artandi is not one of them.
"We definitely see prolonged symptoms, sometimes a lingering cough and the most serious cases have long term chest pains and still feel they can't breathe well," said Artandi, medical director of an outpatient COVID-19 clinic at Stanford University hospital. "It just causes all kinds of inflammation and takes awhile to heal."
Dr. George Abraham, chief of the department of medicine at St. Vincent Hospital in Worcester, Massachusetts, said the body's response to the virus's lingering inflammation will dictate how long it takes to resolve.
"The virus itself is a receptor that binds to the human body," said Dr. Makesh Madhavan, a fellow in the cardiology division at Columbia University Medical Center. Because the body has so many receptors, where the virus connects and inflames may depend on which organs already are compromised or factors still not understood, he said.
Patients with preexisting cardiac diseases, diabetes or coronary artery disease are always at higher risk, he added.
The lungs can nearly "drown in secretions" during the infection, which make them stiff. It can take a long time for them to "start expanding and relaxing" again, said Abraham.
And just how long any of this takes is one of coronavirus' biggest unknowns.
"It’s only been about six months that COVID's been in the U.S. so the term 'long term' is relatively relative," Madavan said.
"We have no idea if or when this will ever end"
Bishof, 30, first had COVID-19 symptoms March 15, tested positive for coronavirus March 23 and negative in May and June with positive antibodies. But the effects show no sign of abating.
"The damage COVID has caused is just continuing to spiral and I am afraid for my life," Bishof said. "I am afraid that there will not be resources for long haulers for a long time."
"Two days ago I passed out, was out for a few hours and when I woke up, my oxygen level was at 83," said Bishof. (Under 90 is considered low, requiring additional oxygen.)
Bishof, a firefighter and single mother, played soccer with her 11-year-old son and worked out five or six days a week before she tested positive for the virus. Now, she said she can't walk more than a block or two without taking days to just recover. She worries the damage to her lungs could keep her from continuing as a firefighter.
"I can’t get help," Bishof said. "So many people are not believed by their doctors or are blatantly being told they have no idea how to treat them."
Like many long haulers, Bishof also wonders about contagion.
"They say with no fever or symptoms for x amount of days you are no longer contagious, but what about us long haulers who constantly have symptoms or waves of flare ups?" Bishof said. "We have no idea if or when this will ever end."
"Doctors have told me this could last anywhere from six months to a year"
Kimberly Campbell, 39, of Pembroke Pines, Florida, has suffered from COVID-19 symptoms for five months. The mom of four started showing typical signs of the viral infection March 1 and was presumed positive for COVID-19 in mid-April when she tested negative for all other possible health complications.
"Doctors have told me this could last anywhere from six months to a year," she said.
Campbell's children and husband showed signs of the virus early on when they developed coughs and intense fatigue. While her family recovered, Campbell continued to suffer from symptoms including a sore throat, constant headaches, pins and needles sensations, rapid heart rate, joint and body pain, temporary loss of vision and shortness of breath.
Campbell has slept on an ice pack for four months ever since her "COVID headaches" started. On June 7 she woke up with a "blotch" in her right eye and every 30 minutes, her vision worsened until she received anti-viral medication and steroids for both eyes.
"I thought I was losing my vision," Campbell said. "I have four little ones and to wake up and not be able to see is just earth shattering."
Campbell tested negative for the coronavirus June 18.
"Doctors said at this late stage, some people are testing positive again and some are testing negative," Campbell said. Although the virus is no longer active, some of her doctors believe she could be experiencing long-term effects. She was diagnosed with chronic fatigue syndrome after months of battling the virus.
Eight specialists couldn't come up with a conclusion about her case, so Campbell turned to Facebook, found a COVID-19 group and a page called "long haulers."
"I typed in some of my symptoms at the top of my search bar and hundreds of stories like mine came up," she said. "I cried for two hours after that."
"I realized how much I wanted to live"
Ryan Head, 44, of Engewood, Colorado had shortness of breath and fatigue symptoms that started March 15. He tested positive April 3 and the breathing problems became more intermittent. Head believed he was getting better when his lungs would clear up for a few days, until flaring up again for several days later.
"I've had days where I've felt great and had a ton of energy," Head said. "But I've also had days where I'm in bed the entire day."
Doctor's responses were varied, he said. Some physicians were receptive and concerned, while others sent him home with little advice to offer after testing.
"What I feel is missing is doctors really wanting to find out what is actually going on," Head said, "I understand this is all new for everybody. Hopefully through spreading awareness as more people become long haulers, doctors will be more ready to help them."
Head said he hopes people will start taking coronavirus more seriously.
"It's not as simple as either having the flu for a couple weeks or being high risk and dying," he said. "There's so much about this virus that we don't understand and there are people living with long term effects that we are just now learning about. Wear masks, social distance and just look out for each other."
"I felt odd because I wasn't getting better"
Diane Matikowski, 61, is a school nurse from Wallingford, Connecticut who volunteered at a rehabilitation facility after her school closed during the shut down.
She felt it was her duty as a nurse to help where she could but she was exposed to coronavirus by a patient at the rehab on March 30. A day later, she started showing symptoms and she tested positive on April 3.
"I knew I had it because I was exposed to a patient that had it and nurses weren't told to wear masks back then," Matikowski said. "My temperature was 100.6 and my doctor wouldn't send me for a test. So, there was a lot of feeling not validated. But I think doctors were frustrated too because they didn't know how enough about the coronavirus."
Matikowski said she was exhausted for more than three months. Her symptoms also included sore throat, loss of smell and taste, leg cramps and twitches, fevers, a rash, hair loss and memory issues.
"I would be watching something on TV and couldn't remember what happened in the last scene," she said.
After about 80 days, depression and anxiety set in. Matikowski was re-tested on June 8 and received another positive result.
"Before finding the long-hauler Facebook group, I thought I was a freak," Matikowski said. "I felt like people didn’t believe me and I felt odd because I wasn't getting better. I just didn't know there were other people like me."'
Matikowski tested negative for COVID-19 July 10 and was briefly ecstatic. Her relief was short lived, however, when she realized she still felt sick.
Now, she said, "I'm fearful."
"I try to focus on: what can I do to help myself?"
Joel Hough, 56, of Manassas, Virginia is an active outdoors man who used to enjoy biking, sailing and flying his glider plane. Now, he misses all of that. Since his symptoms started April 29, he's traded his three-hour bike rides for 30-minute walks five days a week on flat ground. Overexertion causes a sore throat and sometimes a fever.
He tested positive May 3.
"I think the act of walking, swinging arms, the gentle impact on the pavement is more helpful," Hough said.
His symptoms began with a 100.7 fever, irregular heart rate, chills, headaches, a sore throat and a cough.
"The toughest thing for me is going to a doctor and being told there's nothing they can do," Hough said. "I didn't get any instructions really on what to do with myself besides go home, hope for the best."
Hough uses his CPAP breathing machine, takes multivitamins, practices breathing, uses a humidifier and does low-level exercise to feel better.
"Coronavirus support groups have enlightened me," Hough said. "The doctor rolls their eyes when you say you're in a support group, but doctors tell me nothing. Too many of them are overburdened and just don't know enough."
"Some days feel like I don’t have one ounce of energy left in my body"
Firefighter Kimberly Talmadge, 53, of Hamden, Connecticut has been sick with symptoms since April 3, reporting exhaustion, shortness of breath and sleep apnea. She and her husband were exposed working at the fire department.
"We were both sick within a week of exposure," Talmadge said.
The couple reported most of the usual symptoms including fever, cough, dehydration, sore throat, shortness of breath, fatigue, nausea, loss of appetite and a lost sense of smell and taste. Talmadge lost 15 pounds and is still losing her hair at "an alarming rate."
After a few weeks, the couple started feeling better. Talmadge's husband tested positive although he felt well enough to return to work, and the following weekend Talmadge was sick again. They thought living together might be keeping them sick, so she moved to college housing the fire department arranged. Two weeks later her husband got a negative result but it was another month before she did.
She continues to have shortness of breath and intense fatigue.
"Some days feel like I don’t have one ounce of energy left in my body," Talmage said. "This is my 20th year on the job and I’m not sure if I’m going to make it back."
"This is not how they said COVID would be."
Lisa O'Brien, 42, of Roy, Utah is on day 137 of suffering from COVID-19.
It's "not how they said COVID would be," O'Brien said.
Her symptoms began March 11. She never had a fever, but along with lots of shortness of breath she now has arthritic pain, lung clots, vascular issues, internal tremors or buzzing, electrical zaps, sleep deprivation, phantom smells, nausea, loss of appetite and body aches.
"I contemplated sleeping in my car in the parking lot of the ER," O'Brien said. "I just feel so unsafe in my body."
Major brain fog came on Week 14, along with light headedness, varying blood pressure and heart rate fluctuations from 30 to 209 without activity. "I'm not sure which one is more terrifying," O'Brien said. "The spikes are getting higher and higher every week and they wake me up throughout the night every night, sometimes many times."
Doctors from Mount Sinai tell her they've seen many coronavirus patients like her, but they're unable to say why the lingering symptoms only affect some people.
"There's no common factor among us," O'Brien said. "And they can't tell me if or when it will end."
"We can do this"
Rose Dougherty, 56, of Daytona Beach, Florida has been sick for 132 days after testing positive for COVID-19 on April 3. Her symptoms began March 16. She's had difficulty breathing, chest pain, a sore throat, loss of taste and smell, fatigue, burning eyes, loss of appetite, gastrointestinal symptoms, chills and brain fog.
"This virus has impacted my life in many ways," Dougherty said. "I would say the most prominent impact is my family. I have not been able to spend time with my grand kids like I was prior to the virus."
Dougherty used to love the beach, kayaking, going to the movies, shopping and playing at home with her 6-year-old granddaughter.
Being a long hauler with no end in sight is taking a toll on Dougherty's mental health. Yoga is usually her way of staying grounded. Lately, she has been unable to perform at the level she was before COVID-19 and even struggles taking a walk.
"My mind asks, 'Am I ever going to physically be able to do these things again?'"
Doctors and other health professionals have offered their time and expertise freely, which Dougherty described as a "true gift." The long hauler community also has been supportive.
"I am getting to know the most wonderful, caring, supportive people in this country," Dougherty said. "This has helped tremendously knowing I am not alone, I am not crazy and we can do this."
This article originally appeared on USA TODAY: COVID-19 'long haulers' fight for months with lingering symptoms