In March 2020, Melissa Geraghty, PsyD—a licensed clinical health psychologist and CEO of Phoenix Rising with Dr. G who focuses on chronic pain, complex medical conditions, and eating disorders—became the first person she, or her physician, knew with COVID-19. She was recovering from neurosurgery earlier that year when she became ill. 

She went to the emergency room and was told she most likely had a sinus infection and anxiety—she was sent home without being tested. Seven days later, she went back with worsening symptoms. This time, she was given a COVID test, and it was positive. 

“At the start, I exhibited an exhausting number of symptoms,” she says. She had a fever for more than 80 days, lung pain and pressure, mental and physical fatigue, labored breathing, full-body aches, brain fog, shortness of breath from standing or walking, increased headaches and migraine attacks, diarrhea, bloating, stomach gurgling, tinnitus, hot and cold sweats, loss of smell, and a dry cough.

“I still have these symptoms, [minus the fever, shortness of breath 24/7, and diarrhea], every day since March 2020,” she says. “I have also now been diagnosed with mast cell disease and have to carry an EpiPen.”

For some, COVID’s symptoms don’t go away

Geraghty is one of millions who have Long COVID—defined as COVID symptoms lasting for more than three months after infection. Long COVID symptoms can include difficulty breathing or shortness of breath, fatigue, brain fog, cough, stomach pain, headache, heart palpitations, joint or muscle pain, pins-and-needles feeling, diarrhea, sleep problems, insomnia, lightheadedness, rash, mood changes, and change in smell or taste. The virus is also capable of damaging blood vessels and causing cardiomyopathy and muscle pain.  

Researchers estimate as many as one-in-three people infected with COVID will go on to develop Long COVID. Women are more likely to develop this syndrome.

Katelyn Jetelina, PhD, MPH, a data scientist and epidemiologist who founded and authors Your Local Epidemiologist, has focused her work on COVID since March 2020. “We’ve learned a lot,” she says. “We’ve learned what is happening [in the body] and discovered [Long COVID] happening pretty early on among the most severe cases, those hospitalized. We’ve started discovering what pathways are causing Long COVID and what is the biological plausibility of this—and, more recently, how variants and vaccinations change with Long COVID.”

She says recent studies show promising results that if you are infected with the Omicron variant, you have a lower chance of developing Long COVID than if you have the Delta strain. “The risk doesn’t go to zero, but it does decrease, same with vaccinations,” Jetelina explains. Reinfections also have a correlation with severity of long-term effects. 

Gary Kaplan, DO, the founder and medical director of the Kaplan Center for Integrative Medicine in Virginia and a clinical associate professor at Georgetown University, has worked in pain management for more than 30 years. Now, he’s begun to treat patients with Long COVID at his center. 

“It is a dysfunction of the immune system,” he says. He notes that what is happening with Long COVID is not a new phenomenon. COVID hampers the immune system and causes it to misfire, similarly to  pediatric acute-onset neuropsychiatric syndrome/pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANS/PANDAS), Lyme disease, mold exposure, and other viruses and infections.

“All of these things can potentially trip up the immune system to start attacking the central nervous system, resulting in pain and fatigue,” Kaplan says. “And so certainly COVID would do the same; that wasn’t the least bit surprising.”

He says there is an autoimmune and layering component to Long COVID. “You may have things going on in the background that you didn’t understand, and you were putting up with a low-grade kind of ‘blah.’ Then this virus comes along, and things that were smoldering previously have turned into a full-fledged forest fire,” he says. “And that forest fire is in your brain, so now what’s happening is generalized pain, generalized fatigue, concentration issues, sensitivity to light and sound.”

Geraghty says that before she was infected with COVID, she had over 30 medical conditions involving chronic pain, as well as myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. She says since having COVID, her ME/CFS has been much worse. 

“Three months in and with the severity of the symptoms, I began to question if COVID was settling into my body as a chronic illness,” she says. 

Geraghty recommends that those who become ill with COVID engage in radical rest—and her advice holds true for Long COVID as well. “Pacing is extremely important. This is extremely difficult to do when you also have to work, but many people like myself cannot afford to not work,” she says.

With her low energy and fatigue, Geraghty’s social life, work, and even ability to find additional medical treatments have all suffered.

Finding a way forward 

It can be hard to decipher Long COVID, as it carries so many potential symptoms, including effects on mental health. 

“Depression and anxiety disorders, or even obsessive-compulsive disorders, are not unusual complications of this disease, but the problem is that people are being told they’re crazy. They’re not. They’re sick,” says Kaplan. 

He adds, “I think the first thing to recognize is what’s different since you got sick. If you got sick and felt crummy, but then you got better, and three months later you’re back to your baseline, then it’s not Long COVID. If you’re considerably worse than your baseline, COVID is clearly a player here.”

As the research progresses, Kaplan says promising results have been seen with a few repurposed drugs such as low-dose naltrexone, but getting insurance companies to pay for them is “nigh on impossible.”

It is not all grim, though. Kaplan estimates research into COVID has advanced the science of immunology and neurology by at least five years. “So much money and research is being poured into it. I think that we’re going to have much better answers, not just for Long COVID, but also related to a wide range of diseases. Basically, all of our people who are struggling with these autoimmune encephalopathies, which include chronic fatigue syndrome and chronic pain syndromes, these people are going to have much better answers.”

–by Kirsten Ballard

This campaign was created through support from Vertex Pharmaceuticals and Johnson & Johsnon. U.S. Pain Foundation developed the content without review from sponsors. This information is educational only and should not be used as a substitute for advice from a health care professional.