ADRIAN, Minn. — Four months after Jolene Wieneke was officially diagnosed with Post COVID Syndrome by the Mayo Clinic in Rochester, she’s still searching for solutions to some of the lingering side effects from having contracted the virus last November.
Wieneke had to take short-term disability from her job at Citibank in Sioux Falls, S.D., last December. While she’s returned to work, she’s still not able to complete an eight-hour day on the job.
Back in February, when Wieneke first shared her story with The Globe in Worthington, she was dealing with fatigue, tachycardia (fast heart rate), brain fog, headaches, dizziness, blurred vision, insomnia, neurological issues and tingling sensations. She was scheduled to go through three days of testing at Mayo a week later, and ended up getting called back for another round of testing the following week.
Doctors have since informed Wieneke she has central sensitization, which impacted her brain and spinal cord. It's the driving force behind her shortness of breath, brain fog and sensory sensitivities, including vision and hearing problems. Abnormal results in her autonomic reflex test confirmed her autonomic nervous system doesn’t function properly.
“The autonomic nervous system controls heart rate, blood pressure, breathing, digestion, body and skin temperature, hormonal functions, bladder function, sexual function and many other functions,” Wieneke shared in an email. “My dysautonomia symptoms include heart rate issues, both tachycardia and low heart rate.
"I have blood pressure regulation issues, breathing issues (both central apnea and shortness of breath)," she added. "I have bladder issues and digestion issues. I also have sudomotor neuropathy, which causes heat intolerance and other sweating abnormalities. Also, my toes are a ‘lovely’ shade of blue/purple (called COVID toes), meaning there is some damage to my vascular system somewhere.”
Wieneke said she had some issues with each of her two COVID-19 vaccination doses, but noted that reaction to medications is typical for her. She said once those issues cleared up, she actually felt good — wonderful, in fact. She was able to walk a 5K, and noticed less fatigue.
Now, however, the tiredness is returning, and Wieneke said she’s relapsed.
In May, Wieneke traveled to the Mayo Clinic for vision testing and learned her blurry vision and light sensitivity is permanent unless her brain can find a new pathway to react to stimuli.
With so many different issues — including some new problems — she continues to endure the long haul.
“You might wake up with something; you might have something in the middle of the day,” she said. “You might have a good day and people see you out and about, but that doesn’t mean you’ll feel fine the next second. That’s what’s hard about it.”
Wieneke’s latest Post COVID Syndrome problems include internal tremors that go across her abdomen and down her left arm. The tremors started waking her up at night about a month ago, and as of last week, she was feeling them all the time. Doctors say it’s another neurological result from having the virus.
"I think it’s hard for people to understand it if they haven’t actually lived it. For me, the hardest part is when I have some good days and I feel like I’m finally getting better. Then, when I start to relapse, it is so disappointing."
- Jolene Wieneke
Lack of treatment options
With her diagnosis of central sensitization, Wieneke said that with the exception of nerve pain, most of the issues can’t be treated with medication. A lot of her information came through an eight-hour education class hosted by Mayo Clinic for people with Post COVID Syndrome.
“They more so encouraged ways to alleviate the symptoms versus medication,” she said. “It’s like when you have an allergy, you eliminate things until you figure out what is causing you to have the inflammation. You want as little inflammation in the body as possible, because that’s what’s causing the issues.”
Mayo’s philosophy in treating COVID patients is to look at their lifestyle. Many of their suggestions address diet, she noted.
“A lot of people had success going on anti-inflammatory diets, drinking more fluids, salt suppression and exercise,” Wieneke shared. “Mayo believes that with Long COVID, your immune system is somehow attacking your body. They don’t have a treatment yet, 100%, but they have a broad idea of what’s going on.”
Wieneke said the most difficult aspect of being a COVID long hauler is not knowing if or when she will feel completely well.
“I think it’s hard for people to understand it if they haven’t actually lived it,” she said. “For me, the hardest part is when I have some good days and I feel like I’m finally getting better. Then, when I start to relapse, it is so disappointing.”
It has caused Wieneke to feel a lot of sadness, which resulted in her being issued an antidepressant.
“The statistics are that a lot of people have been diagnosed with some sort of mental health issue that never had it before,” she said, noting that the anti-depressants have helped her.
Being able to connect with other COVID long haulers has helped Wieneke know that she isn’t alone. It’s also provided a way for people to help each other if they’ve found a remedy for a particular symptom.
“Sometimes it’s hard to know what to do because you can have so many symptoms,” she said.
Wieneke hopes to connect with an occupational therapist who works with neurological issues to help her address the internal tremors, cognition and vision issues.