My name is Jessica Thomas and I was diagnosed in 2018 with ankylosing spondylitis (AS) and rheumatoid arthritis (RA). I tested positive for COVID-19 in August 2020, as did the rest of my immediate family, including my 16-year-old daughter, who has psoriatic arthritis. I believe it is very important to share my story with others who have rheumatic diseases and take immunosuppressant medications.
Aug. 20, 2020, turned out to be an important day. I hadn’t felt great when I went to bed the night before, and I woke up that Thursday morning with a headache that stretched from my eyebrows to the middle of my back. It felt like a knife was under my right shoulder blade twisting into my lung. I assumed it was a horrible arthritis flare. COVID-19 didn’t even cross my mind. I had no fever or cough.
I called in sick to work and was in bed all day. I could barely lift my head off the pillow, and I was exhausted. None of the pain medications I normally use for my arthritis could break the clenching pain. I took Tylenol, ibuprofen, gabapentin and diclofenac. (Additionally, I receive a biologic infusion every eight weeks. My daughter is also on a biologic medication.)
When my family looks back, we each see this week differently. My daughter, Gabby Lepore, remembers her allergies bothering her. None of us had much of an appetite. We were tired, but we are a busy family so this wasn’t unusual.
As someone with an autoimmune disease, I am very in tune with the fact that one day I might feel terrible, but the next day I am fine. I was really expecting this horrible migraine to go away and that I would be back on my feet the next day.
On Friday, Aug. 21, Gabby and my 12-year-old son, Anthony Lepore, were at their dad’s house. Gabby called me to say Anthony was not feeling well and had a low–grade fever. He remembers feeling suddenly very hot and just wanting to sleep, but he has very little recollection of that weekend. Gabby continued to check his temperature, which was up to 104 that afternoon.
My ex-husband left work and took the kids to the Illinois Department of Public Health free testing center. I wasn’t feeling great, but I was better than the day before, so I figured we were getting seasonal allergies or colds. At this point, my daughter and her father were largely asymptomatic.
I felt much better over the weekend — tired, but nothing out of the ordinary for someone with autoimmune diseases. On Monday, my ex-husband called to inform me that they all received positive test results. I realized that I needed to get tested quickly. I went to four locations in my town and in Chicago — about 30 minutes away — before I finally found a drug store that would give me a test.
This was a Monday. I did not receive my results until Friday morning. I quarantined all week, but by the time the results came, I was very sick.
My son, who had a really high fever and cough, bounced back in about a week. My husband and ex-husband had just mild, allergy-like symptoms. And my daughter felt run-down, but it wasn’t until about three weeks later, when she went back to playing ice hockey, that she had a really bad bout of asthma symptoms. Gabby woke up one night struggling to breathe and landed in the emergency room. She ultimately had to increase her asthma medication, but she recovered within a few weeks.
For me, the darkest days were days seven through 21. I never had a fever or cough, but I am convinced I had every other possible symptom. My head was in so much pain and it radiated around my skull and down my neck and back. Lifting my head would make me so dizzy that I vomited on a few occasions. I also suffered other horrible GI issues that kept me up at night and lying in the bathroom during the day. I passed out twice from pain.
On two different occasions I had a gallbladder attack. I had had a kidney stone in 2019 and that area suddenly ached again. My throat was sore and my head was tender to the touch and burned inside. My muscles ached, my joints hurt and I had horrible chills and night sweats. Around day seven, I lost my taste and smell. I often felt like a knife was stabbing under my right shoulder blade. I have since learned that could have been lung–related, but thankfully I had ordered a pulse-oximeter to monitor my oxygen levels, and they remained normal.
This was an incredibly difficult time because we all were sick. I had to take about six days off of work and returned by working half days because anything beyond that was unmanageable. My vision was impacted. I was exhausted. When one symptom eased up, another one came along and knocked me off my feet. I took a course of prednisone at one point that had absolutely no effect.
My symptoms were heavily neurological. At six weeks, I was still having daily headaches that were really debilitating. I couldn’t sleep, had a lot of brain fog and still no sense of taste or smell. My doctor gave me Topamax, which initially helped the headaches but then they came back with a vengeance. I also had phantom smells — it constantly smelled like a burning building, which made it hard to breathe.
My doctors were out of suggestions, so I finally went to the emergency room. Interestingly, nothing I told them seemed unusual. There aren’t any standard treatments for COVID-19, but the ER doctor prescribed treatments that have worked for some other patients, she said.
They put tubes up my nostrils and dripped lidocaine to numb the nerves and ease the headaches. The doctor took me off the Topamax and gave me a Toradol injection, and she also got me an appointment the next week with a neurologist, who put me on a different medication. (All the while, my daughter and I continued our medications for arthritis, which remained under control.)
One hard part of catching a “novel virus” is that everything a doctor does is experimental. COVID-19 impacts everyone differently, so treatments vary greatly from patient to patient. An advantage of having a chronic illness is that it has given me experience advocating for myself and my family, which has helped in getting treatment for COVID-19 symptoms. But it’s not like you can call your doctor and get a medicine for it. The therapeutics we hear about in the news are saving lives of the sickest people in hospitals. Until I got help in the emergency room, I mostly relied on ibuprofen and other over-the-counter meds.
It’s been more than three months since I tested positive and I still have limited taste and smell. The neurologist ordered an MRI that showed findings consistent with patients with chronic migraines — a new chronic illness for me. Thankfully, after what feels like a long road, the headaches and phantom smells have diminished, and I slowly feel as though I am returning to myself again.
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