What does long COVID feel like?

For Anna Chumley, her long-haul COVID-19 symptoms started with a rash. One that would appear and reappear randomly, spotting her back, face and neck with itchy, red bumps. Then, came the constant back pain, chest pain and racing heart.

Chumley, who caught COVID in summer 2020, said she would sometimes feel like she couldn't breathe.

"I honestly felt like I was dying but I didn't know from what," the Atlanta-based Emory University law student said. "It was like the strangest thing. And like the problem was, unfortunately, when you feel like that, life doesn't slow down around you. I still had exams to take, I still had zoom classes to attend."

She ignored the symptoms, until one day, while driving, the 22-year-old's chest started to tighten. She was confused.

"I have no clue why this is happening," she thought to herself at the time. "I'm not running, I'm not super stressed out."

Chumley called her mom, a family nurse practitioner, who told her it was time to go to a doctor.

Around the same time, a former Sacramento area massage therapist reopened his previously shuttered business. He had also been sick with what he now believes was COVID-19, though it went undiagnosed.

He had mostly recovered from his infection by July 2020. But the 34-year-old, who asked for anonymity to protect his medical information and business reputation, said memory loss and brain fog plagued his entire summer.

He said he was making scheduling errors and double-booking clients.

"Eventually, it became clear to me that the frequency and the type of errors that I was making, I would endanger my clients and their health and their bodies," he said. "I started becoming convinced that I needed to actually just retire and like, stop working because my brain wasn't the same anymore."

He closed his practice again and contracted COVID for the second time in fall 2020. He ended up getting a second bout of long-haul symptoms, but this time, he said they were worse.

This year, in Santa Barbara County, California, 31-year-old Joshua Parra would be forced awake in the middle of the night.

He said he felt a burning sensation in his feet and legs as if needles were pricking the bed of his foot. Then, he started feeling joint pain in his toes.

Although Parra is in the early months post-infection, he is experiencing typical long-haul symptoms. Doctors, however, have not attributed this directly to the infection, he told The Bee.

Parra, who has not received his vaccine, got COVID-19 in early September at a local community college where he was studying industrial engineering. By October, new symptoms were appearing.

A few days after noticing the neuropathy in his feet, he started seeing large amounts of hair in his sink.

"Over the course of a week, I began to see a lot of my hair falling out and thinning to the point you could see my scalp," Parra wrote, preferring to answer questions via email because he said COVID-19 had affected his voice and speech. "I shaved my head to avoid seeing the daily hair loss."

Parra, who once ran Spartan Races, climbed Mt. Whitney, backpacked in the Sierra Mountains and surfed the Pacific, now had seizures, severe fatigue, chronic headaches and heart and digestive issues, he said.

"I worry that when I go to sleep, I will wake up with a new debilitating condition that will reduce the quality of my life," he wrote. "When will this end?"

WHAT'S THE RISK OF GETTING LONG HAUL COVID?

Getting long haul COVID, also known as long COVID, is not uncommon.

A study from PLOS Medicine, a non-profit medical journal, found that "over 1 in 3 patients had one or more features of long-COVID recorded between 3 and 6 months after a diagnosis of COVID-19."

Recent research, however, has differing standpoints on who is more susceptible to lingering symptoms.

PLOS Medicine found that the risk of long COVID was higher in people who had severe infections and was slightly higher in females and young adults.

A study from September by the Centers for Disease Control and Prevention in Long Beach found that people 40 years and older, women, Black individuals and those with known pre-existing conditions "reported higher numbers" of long COVID.

The CDC notes, "As the number of recovered COVID-19 patients increases, monitoring the prevalence of post-acute sequelae among larger cohorts in diverse populations will be necessary to understand and manage this condition."

Post-acute sequelae refers to long COVID. In layman's terms, we don't know everything yet.

And according to Dr. Christian Sandrock of the University of California, Davis School of Medicine, there is no specific age or gender group that is more likely to experience long haul COVID.

However, Sandrock, who works with patients who have acute COVID and long haul symptoms at UC Davis Health, said pre-existing mental health conditions can be impacted by long COVID.

"If you've either had strong anxiety or depression or prior PTSD, we're seeing that those are risk factors," he said.

Particularly in patients that have worsened anxiety, depression and brain fog after COVID, he added.

Dr. Khai V. Tran, a family medicine doctor in Fremont and chair of family medicine at Kaiser Permanente Northern California, added that COVID could also worsen conditions such as asthma and emphysema.

What are the symptoms of long haul covid?

Long-term coronavirus symptoms can range from shortness of breath and fatigue to changes in smell, sleep disorders and extremely cold hands and feet.

"There's still so much that we're learning," Tran said about long haul COVID. "This is a relatively new condition."

Sandrock said brain fog, which refers to the difficulty of thinking and concentrating, is the most common indicator of long-haul.

For Chumley, her brain fog made it hard for her to grasp simple concepts, both in academic and social settings. She couldn't focus on what she was reading or remember the plot of the TV show that she was just watching.

The former massage therapist likened his brain fog to ingesting cannabis and then trying to solve math problems.

"As soon as you think of one thing and try to think of the next thing, the previous thing is gone," he said. "And then after that, you try to think of the next thing and you forget everything that you were just thinking about and you just kind of get left in a blank spot."

Among his patients, Sandrock has also seen loss of hair and teeth. Other symptoms he mentioned included neuropathy, lethargy, chest pain, decreased energy and lowered exercise tolerance.

The massage therapist said he would experience exhaustion from simple tasks, such as sweeping the floor or mowing the lawn, to the point where he would be bedridden for a week. And Parra said he can only walk for six minutes until his body gives out and he can't breathe.

For thousands who are suffering from the residual effects of COVID, the other symptoms can be perplexing. These can include seizures, memory loss, anxiety and depression, among others. Symptoms are still being studied.

What happens when you go for help?

There is no one test that doctors can administer to find out if someone has long COVID, Sandrock said. And similarly, there's no one drug that will alleviate all of its symptoms, according to Tran.

Instead, doctors will look into a specific symptom and run tests accordingly.

So if you have shortness of breath or chest pain, the physician will order a CAT scan and look for clots, Sandrock said. If you have a heart limitation, they might run a cardiac MRI or echocardiogram. If you come in with a loss of smell or brain fog, then they'll have you take neuro-psych tests.

At the UC Davis Post-COVID-19 Clinic, Sandrock said one of the first thing physicians will do is try to figure out what the patient's COVID infection experience was, as it dictates treatment options.

He explained that some people who get COVID and are hospitalized may have "post ICU syndrome," which includes symptoms similar to long COVID, such as brain dysfunction and mental health issues.

However, if you are still experiencing lingering symptoms by the second or third month after your acute infection, then it's more likely a long-haul situation, Sandrock said.

In an attempt to find answers and remedies to their long-haul symptoms, Chumley, Parra and the massage therapist did seek medical attention.

Their doctor's visits entailed running tests, getting blood work done and taking x-rays. But none of them have received a clear diagnosis of their health issues.

Taking matters into their own hands, they've done their own research on medicine, supplements and herbal remedies.

"I tried everything in America," Chumley said, "including, guess what, Ivermectin and it didn't work."

The FDA strongly cautions against the use of Ivermectin, a drug used to treat parasitic worms. It has not been approved as a treatment or preventative method for COVID-19 and using unapproved drugs can be highly dangerous.

There are online groups on Facebook and Reddit with thousands of members sharing their experiences, supporting other long haulers and sharing their research and journey towards recovery.

Tran advised that people should first meet with their doctor before trying anything.

"I totally recommend that they talk to their physicians because there is a ton of things that are out there on the Internet and within groups," he said. "But I think all of that should be done in consultation with your physician."

Light at the end of the tunnel

The road to recovery from post COVID-19 symptoms is long and can be challenging as research is ongoing.

"I think there's hope that the vast majority of patients will get better," Tran said.

While patients may not get instantly healed from their long COVID, Sandrock said he's seen people who have gotten better.

"When they do get better, it's really very often slow," he said.

He added, "So I think that's kind of the key—is they are getting better."

Chumley's symptoms occurred over the span of nine months, but have since subsided. She'll have occasional flare ups of nausea, sleeplessness, back pain, mouth ulcers and tightening of the chest about a few times a month. But it varies and is inconsistent, she said.

The massage therapist noticed his long haul symptoms started to slightly improve this September after he returned home from recent fire evacuations in the Sacramento region.

"I only got a very, very mild flare up," he said. "And once we were able to get home, I was able to rest for just a few days and not get super, super sick."

His brain fog has also gotten better, allowing him to enjoy his hobby of coding for software and games.

Parra, who now volunteers for the COVID Care Group to help spread awareness of long COVID, said he has seen small improvements, such as less frequent headaches, and now has a stabilized body weight. But his speech impediment and motor skills have gotten worse in the past week, he said on his Instagram.

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