- Medical professionals are still assessing the effects and best treatments for people with long-haul COVID-19 symptoms.
- They recommend people with long-term effects try to get adequate sleep and exercise as much as their body would allow.
- They note there are clinics opening across the country that focus on people with long-haul COVID-19 symptoms.
Most people who get COVID-19 recover within a few weeks.
But months later, some continue to struggle with symptoms.
They’ve become known as the “long haulers.” The phenomenon is also called “long COVID-19” or “post-COVID-19 syndrome.”
“As things progress, hopefully the terminology will settle on one or another,” said Dr. Matthew J. Ashley, a neurologist at the Centre for Neuro Skills in California.
Whatever you call it, the long-term effects of COVID-19 are estimated to affect 25 to 30 percent of people who’ve had the disease.
“It’s hard to define what really belongs in this category,” Ashley told Healthline.
“There are a lot of emerging and serious long-term consequences of COVID-19 that relate back to the illness but are separate and distinct things,” he said, “such as stroke, heart attack, anoxic brain injury, Guillain-Barré syndrome, pulmonary embolism, DVT, etc., that occur in some patients because of COVID-19 and its consequences.”
“Then there are the unfortunate people who end up spending weeks in the hospital and ICU who experience associated complications from that, including post-ICU syndrome, PTSD, or the like,” Ashley added. “Whether this is part of the ‘long-hauler’ syndrome or not, it certainly causes significant long-term consequences for people and deserves attention.”
Some common long-term symptoms are shortness of breath during exercise and an altered sense of smell and taste.
Some people have lingering headache, joint pain, or cough. And many cite “brain fog” as a problem.
“As a neurologist, I don’t much care for this term. But it does aptly describe the symptoms of cognitive fatigue and difficulty with attention and focus that many people are describing as a long-term effect,” Ashley said.
“Some people might just feel a bit ‘off’ cognitively. Others describe difficulty with even simple things like paying bills or sending an email,” he said.
Another problem that can impair daily functioning is fatigue.
“Many people who get COVID-19 are experiencing this long-term symptom,” Ashley said. “The intensity varies from person to person, but many are having difficulty performing even basic daily activities like getting around their living environment or doing their weekly shopping routines, let alone returning to work, parenting, exercise, etc.”
Dr. Mady Hornig is a physician-scientist and associate professor of epidemiology at the Columbia University Mailman School of Public Health in New York City.
She’s also a long hauler.
The tickle in her throat started in April. Back then, Hornig didn’t realize it was probably the first sign of COVID-19.
Then came “COVID-19 toes,” which became so swollen at one point that she couldn’t wear shoes.
That was followed by a 12-day fever.
Along the way, Hornig has had swollen lymph nodes, rapid heart rate, and crisis-level hypertension. Add to that out-of-whack thyroid hormones, high cholesterol, and anemia.
Hornig puts in a full workday, but it still doesn’t match her pre-COVID-19 level. She likened the feeling to someone pulling the plug on an electrical device with no battery backup, as in “everything goes at once.”
“COVID-19 has the capacity to infect and affect many different tissues. The ongoing pandemic and other events are stressors and clearly adding to the difficulties for many,” Hornig told Healthline.
She recommends considering your body as its own guide.
“If you’re feeling exhausted, it’s important to figure out how much sleep you’re actually getting. Falling asleep and staying asleep is an issue for many individuals,” Hornig said. “If you’re getting unrefreshing sleep, even though you’re in bed a normal number of hours, work on your sleep hygiene.”
Returning to exercise can be a challenge. If you can’t get back to your pre-COVID-19 level right away, take things slowly and don’t push it.
Hornig suggests using a phone app to chart physical activities, so you have a better idea of how much you’re really doing.
“We don’t really understand the mechanism in post-exertion decline or malaise. We do think it’s prudent to use extreme caution. Be attentive to how you feel. If you’re having respiratory issues, be very careful about exercise,” Hornig said.
She advises doing exercises such as yoga and partial pushups, during which you can work on controlled breathing.
“If you have respiratory symptoms, it’s really important to allocate your energy,” Hornig said.
From her own experience, she knows that pushing the envelope can aggravate matters. Be cautious, slow your pace, and take rest periods.
If you have toe or leg swelling, elevate your legs for 15 to 20 minutes a few times a day.
With a growing number of telehealth options, you don’t necessarily have to visit your doctor in person.
Arrange a virtual visit if you have any concerns or questions about how to recover from persistent symptoms after having COVID-19.
Sleep disorders, for example, can be treated.
“Sleep is a time when the immune system and brain are doing a lot of work,” Hornig said. “When you’re not getting enough quality sleep, you potentially interrupt these important aspects of the body rebuilding itself to be able to withstand the next round of stressors.”
Get in touch with your doctor right away if you have symptoms of a blood clot, which can lead to pulmonary embolism or stroke. And seek immediate medical attention if you have:
- trouble breathing
- chest pain or pressure
- rapid weight loss or gain
- inability to eat or drink
- gastrointestinal problems
- trouble staying awake
Clinics that treat long haulers, such as the Mount Sinai Center for Post-COVID-19 Care and Cleveland Clinic’s Post-ICU Recovery Clinic, are sprouting up in hospitals around the country. Your doctor can help you locate a clinic in your area.
Symptoms of COVID-19 can look a lot like those of the flu, myalgic encephalomyelitis/chronic fatigue syndrome (
When in doubt, testing can help confirm the cause of your symptoms so you can get the right kind of help.
Report new or worsening symptoms to your doctor and follow up as needed.
COVID-19 research is still in its infancy.
“In general, it remains unknown how long these various symptoms, or others that have yet to be identified, can persist,” Ashley said.
“It also remains unclear what, if any, additional difficulties will arise in people who have encountered the virus and ‘recovered,’” he said. “The only way we will learn more is by doing well-designed and consistent scientific studies as time goes on.”
Researchers need your help.
Solve M.E. is an organization that works to advance treatments for ME/CFS, which has some of the same symptoms as COVID-19.
Through its You + ME Registry and Biobank, Solve M.E. is gathering data and biological samples from people with long-haul COVID-19 to compare with data from people with ME/CFS.
If you’ve had COVID-19 and want to donate convalescent plasma, use these links to find a location near you: