Nineteen months ago, Rich tested positive for COVID-19. His symptoms deteriorated quickly and he was placed on a ventilator for a week. He was the first patient at the local hospital to successfully come off the ventilator. He made a promise to God that he would share about his experience and how he felt God’s immense love. (Rich’s original story can be found here.)
Unfortunately, Rich’s journey did not end after returning home from the hospital. He continues to suffer from the symptoms of long COVID. His wife, Kelly, struggles with the emotional and traumatic stress of Rich’s near death experience and the continual health challenges.
“We both changed after going through this experience and it’s hard to get used to the many differences that the lingering symptoms of COVID have brought to our lives,” said Kelly.
“I truly feel God is calling me. I don’t believe these symptoms are only for my suffering. I feel God is calling me to do something with my suffering to help others,” said Rich. “I have tremendous gratitude for all God has blessed me with. I mean, the gift of my very life and all the people who have provided support and guidance. Through the work of my wife, Kelly, He led me to a place (Mayo’s post COVID clinic) that could provide help. Millions of people are suffering right now with ongoing COVID symptoms. I want to be able to share the insights and knowledge I have received in hopes it can help someone,” said Rich.
Kelly explained that several months after Rich was discharged from the hospital with COVID, he started to experience greater fatigue and shortness of breath. Rich’s doctor said his lungs needed more time to heal and placed him on oxygen at night for about three months.
“I was scared,” said Kelly. “The doctors couldn’t answer our questions. It was so weird to see Rich on oxygen. I wondered if this was the way our life was always going to be.”
By January, muscle aches and edema were added to his continued symptoms of fatigue and shortness of breath.
Rich went to a cardiologist to see if something was wrong with his heart. Both the cardiologist and pulmonologist said everything was okay. There was nothing showing up on their tests. Rich was frustrated and confused. There were no explanations for why he was having all of the symptoms.
“Nobody could answer our questions. The doctors said they were still learning from people like Rich. That really scared me because we didn’t know when or if he would improve,” said Kelly.
By March 2021, Rich felt like things were improving and he was thankful for how far he had come since a year ago when he was in the hospital. He found he could do most anything and could deal with some of the lingering symptoms.
What Rich did not know was that he was suffering from central centralization syndrome which is a common condition that many with long COVID are experiencing. This condition causes your body to be in flight or fight mode and it’s difficult to get your body to a state of rest. The damage to Rich’s central nervous system combined with his immune systems over the top response to the COVID vaccine, led to an unexpected setback.
Rich said he experienced extreme shortness of breath. “I felt like a band was around my chest and it kept getting tighter and tighter. The pain and fatigue were intense,” said Rich.
Rich said it took him several months to work his way out of it. He also began experiencing eye pain and light sensitivity. “I would be sitting in a dark room with my hands over my eyes and still feel like it was too bright.”
“I hit a point where I was tired of the doctor appointments and scans. It’s easy to feel like you must be crazy. Everyone was telling me I was fine. But, I felt far from fine. We were getting nowhere. I felt like more needed to be studied and maybe someday we’d get answers. Kelly wouldn’t accept that. It was so hard for her to watch all I was experiencing. It really impacted our relationship. I was in a lot of pain and I didn’t have the energy to do very much,” said Rich.
“To watch your husband suffer and not be able to anything is so hard. I felt helpless which as a nurse has been so challenging,” said Kelly.
Rich does not see it the same way.
“Kelly kept looking for answers. She didn’t give up even after I reached a point where I was done with more appointments and tests. By May 2021, she found a post COVID clinic through the Mayo Clinic. I applied and was accepted!”
During this whole time, Rich said God’s message was the same as what he experienced in the hospital.
“God loves me, He is with me and I need to put my complete faith and trust in Him. I needed to stop trying to control the outcomes. However, what I learned was that when you are laying in a hospital bed fighting for your life, it is much easier to trust in God when you don’t have any other choice. However, when I got further from that experience, I became more self-sufficient. I drifted away from having that complete trust and faith in God. I felt like God gave me a wake up call this spring when my symptoms grew worse. That’s how the deceiver works by telling you that you don’t need God. You can do this.”
Rich said when he completed the applications to enroll in the post COVID clinic and research studies, he didn’t know if these would help him personally but he wanted to participate in case he could help others.
“I needed to trust God. I knew very well that God may be using this to help others. We just never know the outcomes, but with everything, He has a greater purpose.”
After a very thorough process of meeting with a team of physicians and conducting multiple tests and scans, Rich finally learned what was causing most of his symptoms. While they found a few things with his heart and lungs, the majority of Rich’s symptoms were a result of Central Centralization Syndrome. They learned many people with long COVID who didn’t have other major things going on with their organs, had this condition. It is also seen in people with fibromyalgia and chronic fatigue syndrome.
“There’s a trigger (in my case, the COVID virus) that causes the body to get stuck in fight or flight mode. The stimuli coming into your central nervous system are getting amplified,” said Rich. “It’s causing people to experience muscle pain, fatigue, shortness of breath, sleep problems, anxiety, depression, COVID fog and more.”
Kelly said they greatly appreciated the whole experience at Mayo’s post COVID clinic. “They are so thorough. We felt listened to and validated.”
She explained how they participated in a multi-hour Zoom training session with other individuals and their spouses/caregivers with long COVID to help educate as well as teach strategies and coping methods.
“It was very eye opening. It was the first time we met others who were going through the same struggles and we could all relate to each other. We were finally getting answers and it gave me hope,” said Kelly.
Rich learned that to re-train his nervous system, he had to change the inputs coming into his brain. “It’s everything in life like light, sounds, crowds, thoughts and diet. The idea is to try and get your body to a state of rest and limit the stimuli that ramp it up.”
A few things he has found helpful is guided meditation, yoga, bio feedback, eating a Mediterranean diet, not focusing on the symptoms and moderation in activity level.
“Moderation is hard for me. I want to keep pushing through the discomfort. I need to pace myself and stop when I need to. For Kelly, the focusing on symptoms is really hard. Kelly is always caring for people. So if we’re watching TV and I grimace in pain, it’s hard for her to not ask me what is wrong. However, by not addressing it, it helps to focus my attention elsewhere.”
“Through these techniques, I am seeing improvement and making progress. Learning this information and understanding what was happening to my body released a lot of anxiety. Getting anxious and upset makes this so much worse. So just having answers has helped to put my body at rest.”
Rich welcomes the opportunity to talk with others who may be experiencing similar symptoms. If you or someone you know could benefit from hearing more about Rich’s experience, please contact him at: firstname.lastname@example.org.