The Centers for Disease Control and Prevention confirmed the first case of the novel coronavirus in the United States back in January. But many months and over 5 million cases (and counting) later, the medical community is still learning about the virus – including the fact that many patients are still experiencing symptoms for up to five months after they’re considered recovered.
These patients are known as “long-haulers,” a nonmedical term used to refer to those living with lingering COVID-19 symptoms.
According to Janice Johnston, medical director of Redirect Health in Scottsdale, Arizona, “the bulk of patients that contract COVID-19 recover completely within one to two weeks, but those with more serious symptoms can take up to three to four weeks to fully recover.”
As for long-haulers, she said “it’s not really clear just yet who is most at risk of having these lingering symptoms, but it does seem to impact those considered to be high-risk and those with more severe symptoms.”
These symptoms, which include cardiac, neurological and other issues, can be challenging, frustrating, debilitating and life-altering. HuffPost spoke with medical experts and long-haulers to give a full picture of what it’s really like to deal with long-COVID, according to their own experience.
Shortness of breath, cough and tightness of the chest
Johnston said the most common lingering symptoms seen in long-haulers are similar to those seen during the acute phase of the coronavirus, such as shortness of breath, a cough and chest tightness.
She said she has noticed that patients who were ventilated due to respiratory failure and/or because of blood clots were the same ones who had the most challenges getting back to normal, everyday activity after recovery.
“Their lung function and overall muscle mass take a long time to recover, often needing multiple medications, inhalers, oxygen and physical therapy to gain back strength,” Johnston said.
Sandy Rairdan, a 60-year-old from Arizona, told HuffPost that her lung capacity has been poor since she was diagnosed with COVID-19 two months ago.
“I can’t really go much past a half an hour of walking,” she said. “I have been able to swim a bit which is good for my lungs. I had a blood test done and my liver isn’t functioning properly, and my blood platelets are not where they are supposed to be. My bloodwork showed that I had experienced severe trauma. I had a lung X-ray though and everything is clear, so that has been very encouraging.”
“I can’t take a deep breath without the reminder of COVID, as it feels like there are paper bags crinkling in my chest.”– Kristin Smith
Another common symptom of long-COVID is overwhelming fatigue. Johnston said she has not only seen this in patients, but has also experienced it herself since contracting COVID-19 in June.
Rairdan also noted exhaustion as a major part of her experience. “Fatigue is a big one and I imagine that will hang on for a while,” she said.
Aluko A. Hope, co-director of Montefiore Health System’s COVID Recovery Engagement (CORE) Clinic in the Bronx, New York, attributes the fatigue to the “physical, emotional and cognitive work of recovering from this serious illness [taking] its toll on the body.”
“For example, patients who are recently discharged from a serious COVID-related illness may have trouble walking up and down stairs because their muscles are not back to full strength,” Hope said. “This means a simple task like answering a phone call or picking up the mail during the day could push this patient to their physical limits.”
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Brain fog or memory issues
Hope also said that many patients struggle with brain fog after recovering from COVID-19 because their cognitive capacity may not be back to full strength. This means that simple tasks like going to the grocery store — which may require keeping track of a grocery list or walking and thinking at the same time for 30 minutes — may push their physical and cognitive limits for any given day.
Hannah Davis, an independent researcher and artist based in New York City, told HuffPost that she’s been experiencing lingering effects for over 140 days. Davis shared her story in an essay, where she said it all began when she realized she couldn’t read a text message.
“It wasn’t about anything complex — just trying to arrange a video call — but it was a few sentences longer than normal, and I couldn’t wrap my head around it. It was the end of the night so I thought I was tired, but an hour later I took my temperature and realized I had a fever,” she said.
Davis said she dealt with neurological symptoms early on. She said she often felt “foggy and far away” and found herself forgetting things, including the medications she needed to take.
“Four months later, I’m still dealing with a near-daily fever, cognitive dysfunction and memory issues, GI issues, severe headaches, a heart rate of 150+ from minimal activity, severe muscle and joint pain and a feeling like my body has forgotten how to breathe,” she said.
“A simple task like answering a phone call or picking up the mail during the day could push this patient to their physical limits.”– Aluko A. Hope
Jennifer Haythe, a critical care cardiologist at Columbia University Medical Center, said she has seen patients with “persistent heart failure syndromes – low ejection fraction, meaning the heart is weak and not pumping properly – and myocarditis or inflammation of the heart, which can cause chronic chest pain and heart arrhythmias.”
COVID-19 is known to affect blood flow — which means it can impact your hearing. Shelley Borgia, a doctor of audiology and founder of NYC Hearing Associates, said that in the same way “adequate blood circulation is essential throughout the rest of our body, it’s equally as important in our cochlea, or inner ear cavity. When that blood flow is damaged or slowed, it can lead to hearing loss.”
“So if a patient is infected with COVID-19, the lack of blood and oxygen throughout their systems can also restrict their ability to hear,” she said.
Borgia said she has seen patients who’ve experienced “total, sudden loss, and others who struggled to understand speech.”
“Most commonly, my patients are encountering persistent ringing or hissing sounds in their ears, also known as tinnitus,” she explained. “As an ‘invisible’ condition without an external source present, tinnitus is often unique to each individual.”
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Sometimes, you don’t know what symptoms to expect from day to day
Kristin Smith, a 33-year-old from New York who got the coronavirus in March, said she’s been dealing with a “grab bag of symptoms” ever since she contracted the illness. The “first two weeks were by far the worst,” but five months later, she’s still dealing with the effects of COVID-19.
“Three months into it, I had one week where my symptoms had pretty much subsided. My husband (who never showed one symptom!) and I celebrated my ‘recovery,’ and the following day, I was back at square one,” she said. “Shortness of breath, chest pain, body chills, hallucinations, vertigo, rapid heartbeat, heart palpitations, numbness in the leg, tingles in fingers, enflamed esophagus, extreme fatigue, etc.”
“I’ve been to every doctor under the sun, have had every test possible (nerve test, ultrasound of the heart, CT scan of the brain, etc.) and they all come back positive,” she said. “My tests don’t reflect on how I’m feeling.”
Smith said she has been relying on others who have had similar outcomes for support.
“It’s so important to open up about this. I recently joined a COVID long-haulers support group and have found it so helpful to know I’m not the only one,” she said.
And while she – and so many others – may have improved since the original diagnosis, she is nowhere close to being back to normal.
“Comparing myself to how I felt in March, I am overall better. But not recovered,” she said. “I’m terrified that I’ll be this way for the rest of my life. I feel like I’m caught somewhere between death and recovery. I can’t take a deep breath without the reminder of COVID, as it feels like there are paper bags crinkling in my chest.”
Experts are still learning about COVID-19. The information in this story is what was known or available as of publication, but guidance could change as scientists discover more about the virus. Please check the Centers for Disease Control and Prevention for the most updated recommendations.