Officially, COVID-19 hadn’t taken root in Minnesota when Ridler’s partner was hospitalized with “what we thought was really bad bronchitis” in late February.
Ridler, owner and manager of Purple Sage Wellness in Rochester, started to show symptoms in early March.
“I was feeling very sick and weak, and had bone and joint pain, muscle pain,” she said. “I knew something was really wrong.”
Ridler canceled her wellness clients, then her business shut down until early June — which she thought would give her plenty of time to recover.
“My hope at that time was that I would just deal with it, recover, and maybe be able to donate antibodies at some time,” she said.
She’d had H1N1 twice, years ago, and has two autoimmune diseases, so she understands pain, fatigue and inflammation — but COVID was something new.
Ridler’s severe fatigue, muscle, joint and vascular pain, and inflammation have all continued for the past year. She occasionally loses her sense of taste for a day or so, and experiences breathlessness.
“Here’s how you can tell the difference: I’ve had fatigue. I’ve had muscle and bone and joint pain,” she said. "But I’ve never had all of them at once, on an ongoing, continuous basis. … It’s a carousel of badness, and every day these things show up in this random order, and that’s what you have.”
Ridler cited increased stress and hardship in her life — both she and her partner (who has his own long-COVID recovery story) are now working part time due to fatigue and the desire to minimize contact with the public.
Additionally, Ridler’s endocrine numbers have gotten worse — nothing in her medication or diet has changed, but something appears to be worsening her thyroiditis.
“Obviously, there’s something really driving that, and (my care team is) trying to unwind what is happening and how we can stop it and get it back in a different direction,” she said.
Her treatment was set back when she lost her health insurance for the better part of a month. However, as a holistic practitioner, Ridler has also treated herself with supplements, massage therapy, neuromuscular cupping, and a range of other holistic options.
Facebook groups, like Flatten the Curve - Rochester MN (run by Ridler) and the Minnesota COVID Long Haulers Support Group illustrate the wide range of symptoms faced by long-haulers, and help patients share information — there’s a huge learning curve for the newly chronically ill.
“When I go in there and read every couple of days, I come away feeling very concerned about what’s going on, but I also have a feeling of ‘I better count my blessings,’ as well,” Ridler said. “As much as this has upended me over the last year, there are people who are suffering worse, and I need to remember that.”
What can be done?
At the Post-COVID Care Clinic, Dr. Ravindra Ganesh, an internist at Mayo Clinic, is looking to get long-COVID patients back on their feet.
Earlier in the pandemic, all long-COVID patients went to the COVID Activity Rehabilitation Program (CARP). At the end of January, PCOCC was formed through internal medicine to take on some of the load. Now, CARP tries to get people in their first three months of COVID symptoms back to work, while Ganesh and others take a longer look at those still struggling half a year or more out.
Anecdotally, there are differences in the symptoms Mayo’s two patient populations experience, Ganesh said. Pain and shortness of breath are common in the three-month crowd, while those further out tend to report fatigue and brain fog.
Whatever the problem, patients are first tested for obvious signs of tissue damage — and about 15% of the time, PCOCC finds it. Other patients may have slightly elevated test results in an area, but not enough to be blamed for their symptoms.
“We try to match the symptoms to an organ system, and we try to look for any kind of damage that we can target — or at least give people an explanation,” Ganesh said.
For example, a patient with shortness of breath will have their pulmonary system evaluated. If there’s no damage, they’ll evaluate their heart. And if that’s also fine, the patient will go into a graded rehab exercise program.
“A lot of this is both deconditioning after not doing a lot of things for a lot of time,” he said. “We have people who can’t do a lot, and because they don’t do a lot, they get deconditioned.”
After just six weeks, PCOCC had seen its 40th patient, while CARP has treated more than a hundred.
Much of Ganesh’s job is expectation-setting.
“A lot of strange things happen after COVID. My job is two things: The first is to look for tissue damage as a general internist, things we can fix,” he said. “The second part is if there are not things that we can find … we’re still going to work on gently rehabbing you and getting you past this.”
It’s not a perfect system, Ganesh said.
“As we’ve learned from our patients … sometimes people can’t rehab quickly,” he said. “We’ve had a number of patients overdo it, and they get tired and have worsened fatigue or feel worse. This is challenging, because many of our patients are very busy and high achievers, so them not being able to do what they want to do is very frustrating.”
And not everyone is content with the mystery behind their symptoms.
More questions than answers
Brandon Giarusso, of Minneapolis, entered CARP in January after being diagnosed with COVID-19 in November.
Giarusso, 40, currently can’t walk up a flight of stairs without dizziness, weakness, and worrying heart-rate spikes.
“It’s a struggle to do anything at all,” he said. “I can’t take the garbage to the curb, I can’t go to the mailbox, I can’t walk further than a hundred feet without having to sit down.”
At CARP, Giarusso said he had an EKG done, and other tests to “rule out really bad stuff.” He was prescribed physical therapy, like walking to the mailbox and back.
Crucially, he also passed that test back in January. He could walk for about six minutes at a time three months ago, but now he’s deteriorated.
“If you exert yourself at all, it sets you back," he said, adding that he was back in the ER at the start of March for extreme chest pain, which he said will result in another EKG.
Giarusso, a real estate investor, said he can’t leave his house except to go to the doctor — and he’s seen four in the past few months. Next, he’s pinning his hopes on Dr. Bruce Patterson, a virologist analyzing long-COVID patients’ blood for immune markers, then prescribing drug treatments. But for now, he’s relying on supplements and a range of tests — gut biome, genetics, vitamins and minerals, any immune issues, and more.
“I’m trying to get a full picture of my body — it’s expensive as hell, but I have no life right now,” he said. "There’s no light at the end of the tunnel. … I want to have faith in Mayo — I’ve seen them for a lot of my other medical stuff and believe they’re the best — but here, I think they’re behind.”
In a case like Giarusso’s, “that’s somebody I’d actually want to see,” Ganesh said. “Having a sudden decline in function after being able to do more … I think something else has happened.”
COVID has an acute phase, he said, which we all know about — the cough, shortness of breath, and sudden flu-like symptoms. Then comes the sub-acute phase, where an unlucky patient might get blood clots, myocarditis, or another lung disease.
“That guy’s in a phase where there really shouldn’t be more events," said Ganesh, who is not currently treating Giarusso. "The only things that happen out in the four- to six-month range are that people still sometimes do get blood clots — or he’s had something brand new. So he’s someone I’d like to re-evaluate.”
Ganesh said 40% to 60% of the CARP program’s patients have improved within three months. PCOCC hasn’t been around that long, but a “significant number” of patients have increased their mobility.
There is still a subset of people who remain profoundly debilitated — Ganesh said if he can figure out why some people aren’t recovering, “I’m going to Stockholm to get a Nobel Prize.”
Mayo doctors have some information: Hospitalization isn’t a factor, and the severity of the disease doesn’t predict whether someone recovers fully. Slightly more women than men are being treated at Mayo, but it’s unclear whether that’s because women are “better about going to the doctor.”
There’s likely a combination of genetic and environmental factors that predispose some people toward long COVID, Ganesh said. Still, “there are more questions than answers at this point in time.”