(CNN) – Brain fog, fatigue, heart palpitations, post-exertional malaise and dizziness are a handful of the symptoms associated people with long COVID in adults.
They are among the 12 symptoms identified as part of the National Institute of Health’s RECOVER initiative that can be reliably used to classify someone as having long COVID.
The rest are gastrointestinal distress, chronic cough, thirst, chest pain, abnormal movement, changes in sexual desire or capacity, and a change or loss of smell and taste.
If you have experienced a certain number of these symptoms (they are weighted according to how specific to long COVID they are) then you may be one of the up to 23 million people in the United States who had or still has this condition.
Since the early days of the pandemic, it quickly became clear that some people who caught SARS-CoV-2 – the coronavirus that causes COVID-19 – did not fully recover. They continued to experience often debilitating symptoms for weeks, months and in some cases, years after their initial infection.
Doctors, researchers and health authorities were skeptical at first – and then stumped. They struggled to define and measure long COVID, to identify a cause for or a mechanism behind it. And to figure out which factors put people at higher risk of developing it.
While we have come a long way since the early days of the pandemic, many questions still remain, including how to prevent it in the first place (HINT: getting vaccinated against COVID seems to lower your risk even if you do get infected) and how to best treat symptoms once they emerge.
Long COVID is not somebody else’s problem: a 2022 National Center for Health Statistics survey estimated that almost 7% of U.S. adults, and more than 1% of children, who reported having COVID have struggled with long COVID at some point.
While the number of cases of long COVID have fallen since 2022 and many people recover to different degrees, people continue to get diagnosed with the illness and struggle with symptoms.
One of the most vexing symptoms that many patients report is brain fog, according to David Putrino, a neuroscientist and the director of Rehabilitation Innovation at the Mount Sinai Health System in New York City.
“We’re starting to learn a lot more about what is happening in the brain during an acute COVID infection,” Putrino told CNN Chief Medical Correspondent Dr. Sanjay Gupta recently on his podcast Chasing Life.
Putrino said that researchers in the UK found “alarming changes” in brain size and cognitive function after a COVID infection, even in people who didn’t report experiencing long COVID. The study was published in the journal Nature in 2022.
“Their brains had been changed,” Putrino said.
Another common complaint, according to Putrino, is post-exertional malaise, which is the worsening of symptoms following even minor physical or mental exertion.
“They didn’t say ‘post-exertional malaise.’ No one knew what post exertional malaise was, but they would say things like, ‘I went to get my groceries and then I crashed,’” Putrino said.
“‘Crash’ was a big word that was being used. ‘I went downstairs. My groceries were delivered. Carrying them up the stairs back to my apartment caused me to crash, and I couldn’t get out of bed for two days.’”
Putrino said that the wide-ranging symptoms of long COVID may be caused by one or more underlying factors, including micro-clots which block small blood vessels and lead to problems such as cognitive issues; persistent viral particles that continue to circulate and stir up our immune system; and the inflammation of the vagus nerve which can result in dysautonomia and manifest as POTS, or postural orthostatic tachycardia syndrome.
What can you do to help yourself if you have long COVID? Putrino has these five tips:
Rest and pace yourself
Be aware of what your limits are and don’t push yourself beyond them to avoid crashing.
“One of the most important tools we have to prevent worsening or progression of long COVID is an energy conservation technique known as ‘pacing,’” Putrino said in an email.
The tricky thing is, your limits may change from day to day, and may be affected by many factors such as hormones, stress and even the weather.
Read more about pacing at https://longcovid.physio/pacing.
Get evaluated for dysautonomia
Dysautonomia, a nervous system disorder, is a common cause of some of long COVID’s seemingly weird and disruptive symptoms, such as rapid heartbeat and dizziness.
“Your autonomic nervous system is a network of nerves in your body responsible for managing things like breathing, blood pressure, body temperature and healthy blood flow and organ function,” Putrino said.
“When the autonomic nervous system is knocked out of balance, it leads to a condition called dysautonomia. On average, 70% of people with long COVID experience dysautonomia and it contributes significantly to overall symptom burden. Dysautonomia is treatable with medications and rehabilitation.”
Learn more about dysautonomia at https://www.dysautonomiainternational.org.
Mind your mast cells
Sometimes, during both an acute COVID infection and in long COVID, a person experiences hyperinflammation across many body systems; researchers believe that this happens because mast cells are activated.
Mast cells are allergy cells, which are part of the immune system; when they’re stimulated, they create inflammation and release many chemicals that can affect the skin, gastrointestinal tract, heart, respiratory, and neurologic systems.
“A large proportion of people with long COVID have developed Mast Cell Activation Syndrome (MCAS),” Putrino said. “MCAS can be extremely debilitating, but can also be well-managed with appropriate medical supervision using over-the-counter medications and supplements.”
Learn more about MCAS at https://www.aaaai.org/conditions-treatments/related-conditions/mcas.
Put your breath to work
Use breathwork for managing symptoms, said Putrino.
“Dysfunctional breathing and altered gas exchange is present in a majority of people with long COVID, and a daily breathwork practice can significantly improve daily symptoms.
Learn more about breathwork and long COVID at https://longcovid.physio/breathing-pattern-disorders.