Tammy, Age 49, Pennsylvania
Before being infected with COVID-19, I did have some ongoing chronic health issues but I had found ways to cope and still live a really full and active life. I went for walks, loved the exercise that I got through water-based strengthening physical therapy, went on vacations, and had good cognitive skills.
That all changed when my first symptoms of COVID appeared on March 10, 2020. I believe I contracted COVID during a trip to visit a dear friend in the hospital. I came down with the classic COVID symptoms; Intense dry cough, fever, sinus congestion, GI symptoms, and extreme fatigue. Unfortunately, it was never officially confirmed that I had COVID because testing was not available in our rural area at the time. I was eventually diagnosed through my clinical symptoms being presumed to be due to a COVID infection.
It wasn’t until about mid-May that I first started to notice some really serious issues. I had recovered for the most part from my initial COVID infection with the exception of a lingering cough, but then suddenly I started to have frequent dizziness, heart palpitations, and throwing up every morning after getting out of bed. I had visual disturbances, numbness, and tingling in my arms, hands, legs, and feet. My blood pressure and heart rate fluctuated wildly. I had daily migraines, blood sugar issues, brain fog, significant hair loss, loss of vision in my left eye, night blindness, inability to focus my eyes occasionally, dried out mucous membranes, constant sore throat with swollen lymph nodes, easily bruised, bone pain, muscle spasms, breathlessness, low oxygen levels during sleep, significant weight loss, motion sickness, internal buzzing/vibrations, discoloration of my hands and feet, body temperature fluctuations, and gastric issues.
As of today I have been diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS), postural orthostatic tachycardia syndrome (POTS), fibromyalgia, thyroid dysfunction, endocrine dysfunction, suspected Sjogren’s syndrome, and suspected Hashimoto’s disease.
I am still struggling with lingering symptoms and while some are mild, others are severe enough to put me into bed for a couple of days. I am also still struggling to find appropriate treatments. I had many tests, workups, and labs but have struggled to find any adequate treatment with the exception of some heart medicines for tachycardia. I have however found a lot of support and help through Long COVID support groups and through a COVID Long Haul clinic.
Through all of this, I have really developed a passion for trying to educate and advocate for those of us with Long COVID. In the process, I am learning about other post-viral illnesses, such as POTS and ME/CFS, that I was never aware of before. This pandemic has made it more important than ever to bring awareness to these illnesses.
I want other people like me to know that they are not alone in this fight, that it isn’t in your head, and there are now options beginning to emerge for treatment, as well as an entire community for support and education.
One of the biggest issues I would like to bring more attention to is that those of us who got infected early in the pandemic, before testing, and before enough knowledge about what COVID even was, are being left behind in treatments and studies. We are often overlooked because we don’t have a test to prove we had it. Reliable antibody tests didn’t arrive until 4-5 months after my initial infection and therefore was not taken seriously as a Long COVID victim.
It is my hope that through our connection our voices will be amplified, heard, and seen, and more people will know what the face of this invisible illness looks like.