COVID long-haulers: it’s not in your mind

By Sahar Chmais
It started off as a mild COVID-19 infection – night sweats but no fever, joint aches, pressure on the sinuses and a loss of smell. Kris Allison, a 44-year-old pole vaulting coach who has taught local athletes from Hays, Dripping Springs and Wimberley ISDs and throughout the nation, thought that after 10 days of unpleasant symptoms he defeated the virus.
He got back 85% to 90% of his health, but after a month, his health began to decline. Allison got infected in July and five months later, he is still feeling long haul symptoms of COVID-19.
“As weeks and months rolled over, I felt bad,” Allison explained his symptoms, “body aches all over, random pain in my joints and my knuckles. Then I did some research and learned about long haulers. Then saw the term brain fog and thought ‘wow, there’s the name.’ When I would start a task I could not get organized, felt like I was chasing my tail.”
Allison has Attention Deficit Disorder (ADD) which he has been treating, but having brain fog made him feel far worse. He said it made him inefficient and unproductive; he could only squeeze out a few hours of work in his day. Brain fog made it difficult for Allison to start or finish anything, left him feeling confused, tired and with little motivation.
It is unknown how many people become long haulers, or what factors yield these symptoms. Some people, like Allison, are generally healthy with no morbidity issues and still get long-haul symptoms. So far, the factors are mysterious. Some universities have been studying long haulers and creating groups for them, but that is not an accessible option for everyone. There is some difficulty in understanding these side effects of the virus, but Dr. Jack Bissett, an infectious disease specialist at Ascension Seton, spoke about what he knows and what people should be wary of.
First of all, Bissett wants people to understand the limitations of what we know about COVID-19, let alone the long hauler phenomenon. People crave quick answers in this fast-paced society, but the virus is fairly new with much to be uncovered, Bissett said.
Keeping this in mind, Bissett then divulged some of the information known so far about long-haul symptoms.
“It doesn’t really seem to have any obvious correlates, at least so far,” Bissett said. “There have been people who got it and you can predict they would have a long recovery. But we have had patients who have never been hospitalized who have fatigue and body aches.”
In some patients, symptoms can linger for two or three months and then they heal, but in others, it can take upwards of nine months, Bissett said.
But there is another mystery in long haulers. Are they long haulers because of an inflammatory reaction, or have they had so much downtime that it has affected their ability to function at their normal level?
“If I were to go home and lay down on the couch and stay there for 10 days, I would feel really weak and lethargic,” Bissett said. “I would feel really weak when I got up off my couch and started trying to do things. It would take me some time to recover my baseline strength.”
Some patients have more downtime than 10 days due to the severity of their illness, which will make it even more difficult to get back to their original health.
This does not mean that all patients who have long-haul symptoms have them due to the downtime, Bissett clarified. The immune system is a very complicated part of the human anatomy, so much so that not even the same family members have the same responses to illness.
Patients who have long-haul symptoms have some sort of ongoing inflammatory response that is left over from the virus, and that is what triggers these symptoms, Bissett said.
“There are some times when our immune system is supposed to help us, and it usually does, but there are some times when it over acts and does more than we need it to,” Bissett told the Hays Free Press/News-Dispatch. “That can lead to some of these chronic inflammatory syndromes where people just feel ill. It’s their own immune system that’s sort of wound up and can’t turn itself off.”
People are left wondering which is it – an inflammatory response or being worn out. And there is no test that can measure this question.
Bissett suggests that long-haulers try to be as active as they can and they should try to do things even though it may feel uncomfortable or unpleasant. This includes physical and mental stimulation, perhaps that will help patients find their way out of the brain fog.
“The longer you lay in bed, the weaker you get,” Bissett simply said. “Even though you may not feel like doing anything, doing something is better than nothing. Try to move and try to have your brain do something.”
Allison was using this advice. Even through his long journey of recovery, he continued pushing through the physical and mental pain. He even began taking all sorts of vitamin supplements to regain his health. After months of this pain, Allison said he is beginning to get into a better place.
Jennifer, a Western Hays County resident who asked to only go by her first name, has undergone a similar course as Allison. Her symptoms began in September and she is still struggling to find a solution. There is no answer on when she will get better. All Jennifer knows is that she is in pain and that it has taken away her ability to work.
Jennifer’s pain slightly differs from Allison’s. Their symptoms were all the same, except Jennifer began experiencing severe pains in her leg and hip, irregular blood pressure and intense itching on the back of her head. The fatigue, Jennifer said, is worse than what one would experience with mononucleosis or the flu.
Both patients said what is helping them get through this is the support of their family.
In Jennifer’s case, she found the help and support she needed from her mother, who is also helping care for her children. Allison found the help and support needed from his wife, who has been by him and their children every step of the way.
Their advice on the matter is not to take this virus lightly. It was difficult for Allison to find advice on how to aid those with these lingering symptoms because so little is known. All he could advise people who are in this situation is to find a supportive person to help them through this period, and to know that they are not making this pain up – it is very real.
“Unfortunately there’s more that’s unknown than is actually known and we have to acknowledge that and be honest with our patients about that,” Bissett said. “We’re working on it, but the truth is it’s a real syndrome. You’re not losing your mind, you’re not crazy and we’re going to keep working on it until we have a solution.”

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Sahar Chmais holds a bachelor's degree in journalism from the University of Texas at Austin. She has been covering cities in Hays County for one year, touching on residents' struggles and successes, city issues, COVID-19 and more. Prior to reporting on the local spectrum, Sahar reported for a national news organization, covering gun violence. Sahar enjoys working as a local reporter because she gets to work with real people and their stories.

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