Ilona Drew, 37, had Covid-19 for the first time in January, but at the time, she didn’t experience anything out of the ordinary: achiness, a sore throat, fatigue.
It wasn’t until later, after testing negative, that she noticed things in her body going awry. The brain fog was bad enough; in February, she also began experiencing bad dizzy spells.
“That was a problem I couldn’t live with,” says Drew, who lives in Boston. Yet even after multiple screenings, her doctors couldn’t find anything amiss.
That’s when Drew turned to the Brigham and Women’s Covid Recovery Center. It’s one of several dozen programs across the country formed specifically for treating suspected cases of long Covid. Demand for this kind of help is overwhelming. Drew, who registered for help this summer, is currently on the waitlist.
Nearly 1 in 5 American adults who have been diagnosed with Covid-19 continue to grapple with long Covid. Last month, surveys suggested that this seemingly chronic condition is keeping up to 4 million people out of work. “Long-haulers” describe lingering Covid symptoms, like fatigue, shortness of breath and cognitive dysfunction, or develop new ones. These symptoms last at least 12 weeks after a patient’s initial infection and can’t be explained by another diagnosis.
While research has identified signs and symptoms of long Covid, experts still aren’t completely sure why some people develop it and others don’t. Flurries of studies have floated different theories. Some say “microclots” in the blood might be at fault. Others blame lingering fragments of the virus. One paper noted type 2 diabetes as a significant risk factor.
Figuring out whether you’ve got long Covid or an unrelated illness or condition requires paying close attention to patterns in your symptoms. Dr. Priya Duggal is an epidemiologist at the Johns Hopkins Bloomberg School of Public Health who studies the condition. She says patients should ask themselves, “Are these symptoms new? Or did I experience them in some form before catching Covid?”
As Covid variants evolve and spread, the percentage of people who develop long Covid may also shift. Right now, experts predict up to 5 percent of these patients will have trouble functioning in their daily lives. Here’s what to know about the condition — and when and how you should seek help.
What are the typical symptoms of long Covid?
Long Covid symptoms are unpredictable, and can last for weeks or years. Even patients without preexisting conditions can lose functionality fast.
“We have people who are young, who didn’t seem to have any symptoms associated with disease of any sort before getting Covid,” Duggal says. “Now, all of a sudden, they can’t walk their dog or walk around their neighborhood for a quarter of a mile.”
Symptoms vary widely. Many long Covid patients experience extreme fatigue. Brain fog, or fuzzy thinking, and sleep disturbances, such as trouble falling or staying asleep, are also commonly reported. Some patients experience a persistent low-grade fever, cough, chest pain, headaches, tingling, change in smell or taste, depression and anxiety, joint and muscle pain, ringing in the ears or rashes.
How can you get a long Covid diagnosis?
Most people seek care for symptoms resembling long Covid with a visit to their primary care doctor around eight weeks after their initial infection, says Duggal.
Your doctor will go over your medical history and ask about your Covid-19 infection, current symptoms and how long you’ve had them. You may need lab work, like an X-ray of the lungs, or blood work to check your thyroid or other organs. Your provider might also refer you to a specialist to rule out any other issues.
Drew’s PCP first referred her to an optometrist to rule out an optical migraine. She also saw a cardiologist, who thought her symptoms might be connected to a malfunctioning nervous system. When these leads didn’t pan out, her primary care doctor referred her to the closest long Covid clinic.
What happens at one of these clinics?
Long Covid clinics are new, multidisciplinary care centers that develop individualized treatment plans for people struggling with long Covid symptoms. Most have specialists, such as neurologists, cardiologists or pulmonologists, who are well-versed in treating long Covid symptoms. These centers typically require a referral from a patient’s primary care doctor and proof of a prior Covid-19 infection, either through an antigen or blood test. Many have long waitlists.
How are medical providers treating long Covid?
Since there isn’t yet a consensus on why some people develop long Covid, treatment depends on each individual’s symptoms. For example, patients with insomnia might be directed to modify their sleep routine, try melatonin or another sleep supplement, or enroll in a sleep study.
Though Drew is still waiting on treatment for her dizziness and fatigue, she’s been given a list of lifestyle modifications to try to ease her symptoms, which the Brigham and Women’s clinic suggested could be linked to dysautonomia(a misfiring autonomic nervous system). She’s been advised to drink plenty of water, add salt to her diet and ensure she’s getting enough sleep.
“The complicated part is that there isn’t a cure-all,” says Duggal. “You have to treat the symptoms that are present.”
What’s the prognosis for long-haulers?
While some people recover from long Covid after just a few weeks or months, other long-haulers’ symptoms have lingered for years. Drew says the long Covid clinic coordinator told her that many people feel better at around nine months to a year after their initial infection.
“Some are going to get better,” says Duggal. “But we still don’t know yet what symptoms are resolvable and which ones are not.”
That may sound scary, but experts aren’t just waiting around for a resolution. “I’d hope that with more studies, data will emerge that can help us identify those at a clear risk for developing long Covid,” Duggal says.