Support Group Helps Patients With Lingering Effects of ‘Long Covid’Dec 23, 2021 02:51PM ● By Liv Osby
Fred Wood tested positive for Covid a year ago and suffered extreme fatigue at the time.
The worst was to come a few months later.
Suddenly, he began to notice intense muscle weakness. Then came severe shortness of breath.
“I went to do my exercises and after just two repetitions, I was breathing very heavily,” the Greenville man said. “I could barely go 15 seconds (on the elliptical) when I used to go 20 minutes. I tried every exercise and the same thing happened.”
The retired architect had long Covid syndrome, a condition that leaves patients with a variety of symptoms long after they’ve recovered from the acute phase of the disease.
So Wood, 77, turned to a support group especially for patients with the condition.
“It helped me because it normalized the situation,” he said. “It let me know that other people were going through the same thing.”
Bon Secours St. Francis Health System launched the group after realizing there were people who continued to have symptoms even though they no longer tested positive, said Lori Smith, the behavioral health therapist who led the group Wood joined.
“The group does help people feel less lonely, isolated, and judged,” she told Integrated Media, publisher of Greenville Business Magazine, Columbia Business Monthly and Charleston Business Magazine.
“It’s a great place to get support from others with the same experience.”
Symptoms of long Covid syndrome include profound fatigue, brain fog, dizziness, headaches and shortness of breath, said Dr. Jane Kelly, assistant state epidemiologist with the South Carolina Department of Health and Environmental Control.
Other symptoms include muscle aches, body pain, palpitations, coughing, trouble sleeping, a change in smell or taste that can leave people unable to eat, and abdominal pain and nausea.
“And it’s usually not a single symptom, but multiple symptoms,” she said.
The official case definition of long Covid includes any symptoms that have lasted for 28 days or more after diagnosis, Kelly said.
One study looked at 177 people with Covid and found that more than 30 percent of them had symptoms for more than 28 days, she said, while some had them nine months, which was the duration of the study.
And it happens to people who initially have mild illness, like Wood, as well as those who have more severe disease, experts say.
While it seems to be more common in females, they are more likely to report symptoms than males, so it’s hard to know whether they in fact have the syndrome more often, Kelly said.
It’s also more common among young people, she said, adding there is no information on race and ethnicity yet.
“A lot is unknown,” she said. “But this is not just a subjective condition. It’s a real thing. It has an official name – Post Acute Sequalae of SARS-CoV-2. And the CDC recognizes this as a real physical phenomenon.”
Why it happens is the subject of much research, Kelly said, noting that theories include an autoimmune response or chronic inflammation triggered by the virus.
But it’s not the only condition that has led to post-viral infection syndromes, she said, pointing to chronic fatigue syndrome.
While there are some guidelines to help with some symptoms – such as progressive exercise training – no medication has yet been identified that would make a difference, Kelly said. But there is a growing network of post-Covid recovery programs around the state, including in Charleston, Elgin, Greenwood and Spartanburg, she said.
“There are so many people who’ve had Covid,” she said, “that there potentially will be many people who will have this.”
The aim of the support group is to reduce the depression and anxiety that can accompany long Covid, and for people to be able to talk openly about their feelings, Smith said.
For example, symptoms like brain fog and fatigue can interfere with the ability to work, leading some to fear they will lose their jobs, she said.
While two of the group’s members were able to work from home so they could set their own schedules, Smith said, it can be tough for someone who has to work onsite for many hours.
The group offers coping skills such as progressive muscle relaxation, guided imagery, calm breathing, and other stress management techniques, she said. And ways to reduce anxiety, such as training your brain to challenge cognitive distortions and thinking traps like catastrophizing.
“For example, if you’re having a bad day with symptoms, and you think, I’m never going to get well, you can ask yourself questions like, ‘Do you have evidence that you will never get better? No,’” she said.
“There are other ways of looking at this, like this is just a bad day. It doesn’t mean they all will be bad.
Pacing is emphasized for those with chronic pain so they don’t try to do too much on a good day and instead break tasks into chunks of time with rest in between, she said.
“That seems to work better,” she said. “It gives them a more consistent level of activity instead of pushing themselves and then being down for three days.”
Smith said that while taking the first step to join a support group can be daunting for some, those who attend appear to be coping better even if their symptoms didn’t improve.
“It can be hard to open up to strangers. But once people attend and feel comfortable, they say it was helpful,” she said. “One gentleman said he was relieved to know it wasn’t all in his head, that other people had this.”
The first group lasted about six weeks, she said, but Bon Secours is still taking referrals and a second therapist is available for another group.
“There are probably a great number of people out there who have it and do not recognize it,” she said. “And they may not talk to their physician about it.”
Smith recommends that anyone concerned that they might have long Covid consult their physician.
After he was diagnosed, Wood said he was sleeping up to 18 hours a day.
And while his long Covid symptoms have improved over time, they still haven’t resolved completely. He’s only able to spend limited time with his four grandchildren, for example.
“If I walk across the room, I’m breathing hard and have to catch my breath,” he said. “On the upside, the support group was very helpful.”
Want to know more about the support group? Contact Kayla Smith at [email protected]