According to a survey conducted by the CDC, 65.9% of respondents who had positive COVID tests reported lengthy COVID symptoms that lasted more than four weeks.
MINNEAPOLIS — As COVID cases continue to fluctuate, hundreds of thousands of people are still trying to figure out why they still don’t feel quite right after testing positive for the virus.
The world of long-term COVID remains mysterious — and the individualized experience each person has with long-term COVID — doesn’t make it easier for doctors to determine how they can help.
On good days, Rachel Bean’s long COVID allows her to chat for a while.
“Half past ten in the morning is one of my best times of the day, and at seven tonight I will be completely unable to concentrate or do anything,” Bean said via Zoom in late April.
On really bad days, she said, simple tasks often seem out of reach.
“In January of last year I took the car for an oil change, sat in the queue for a few hours and then got lost on the way home because I got crushed so hard I couldn’t remember where I was,” Bean said.
This month will be Bean’s second long COVID birthday.
Long-haul COVID still remains a mysterious and intensely personal experience that is universally frustrating for anyone suffering from it.
“When I’m really crushed, I lose quite a bit of motor function in my hands and arms, like holding my phone, writing in my journal, trying to eat popcorn, really fine motor things, become impossible,” said she declared. “And then during these crashes I also kind of lose all focus or concentration, my memory is Swiss cheese.”
Bean is one of millions of Americans struggling with lingering post-COVID symptoms.
A September 2021 CDC study said 65.9% of respondents who had positive COVID tests reported long COVID symptoms that lasted more than four weeks.
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Symptoms range from fatigue to cognitive dysfunction, loss of smell or taste, hair loss, shortness of breath, and post-exercise sickness, which worsens following physical exertion or minor mind.
Symptoms also don’t often lead to a clear diagnosis, according to co-director of the M Health Fairview Post COVID Clinic, Dr. Tanya Melnik.
“Primary care providers often don’t know what the next step is, or they tell patients, well, everything is normal, I don’t know what to do with you,” Melnik said.
Dr. Greg Vanichkachorn of the Mayo Clinic, however, says there are clues.
“For example, with the fatigue that people are feeling, yes, we can feel bad after a virus, a normal virus, not sleeping very well, but the fatigue with long-haul COVID is pretty deep,” Vanichkachorn said. . “So patients will say things like they need to take a nap for three to four hours after taking out their trash.”
“Even at my house, washing the dishes even takes three different times throughout the day to do it,” Bean said.
Another thing that makes the lengthy COVID diagnosis difficult is that people like Bean test many things like conventional chest scans, EKGs, and lung function, making it difficult to prove illness for things like medical discharges and disability claims.
“It’s kind of a weird set of circumstances, where you can be so weak and have no kind of formal proof that, other than your word, you’re too sick to work and can’t do anything” , Bean said.
“A common frustration for long-term COVID patients is that they do all these tests and everything comes back to normal,” Vanichkachorn said. “Now what that doesn’t mean is that their condition is normal, it just means we don’t have the best tests for it.”
“Our focus here is both on symptomatic treatment and on helping patients get stronger,” continued Vanichkachorn. “A lot of people with long COVID are being told to exercise through this, kind of have a no pain no gain attitude. I’m a big proponent of exercise – and it has its part in the conditions medical, but not with a long COVID. It’s not one of those things you can grit your teeth through and get out of it. On the contrary, we have patients who start very low with their activity levels and slowly increase with time.
Finally, the two doctors say that patients often feel lonely, which sometimes leads to depression and anxiety. Confirmation of their symptoms is also a big part of the service provided by the clinics.
“It’s hard for patients at times when none of their friends are dealing with the same issues,” Melnik said. “And they start to doubt their own symptoms, and I’ve had a lot of patients say to me ‘oh, I thought it was all in my head’.”
“Many patients really need to have this validation even today, even though we’ve recognized this condition for a while,” Vanichkachorn said. “With this validation, do people suddenly improve? No, I don’t see it unfortunately, but it gives them a ray of hope that they desperately need to start this path of recovery.”
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