My Experience with Covid (maybe...)

Similarities between Long Covid and Autoimmune Symptoms.

About 6 weeks ago, I came down with a cold and felt just awful. In addition to my usual cold symptoms, I also had a fever (which was rare for me), a terrible headache, upset stomach, slight heart palpitations, and felt more fatigued than usual. It was both scary and confusing for me, because I wasn't sure if the fatigue was part of my Sjogren's and I was just experiencing a cold at the same time as a flare, or if I had Covid.

For the first few days, I felt so out of it that I just slept for the most part. I was congested, miserable, and had lost all appetite. I began to monitor my temperature constantly for fear that it may spike too high. I started taking Zinc, Zicam, Vitamin C, and Tylenol daily, hoping that my body would quickly fight off whatever this virus was. At times, my entire body felt inflamed--my skin felt warm and my extremities felt like they were burning. It reminded me much of my bad autoimmune flares, except I also had a stuffed nose and a fever. And because there was a virus, I didn't want to suppress my immune system with Prednisone, which would normally help me with a flare. At the behest of my doctor, I purchased a finger oximeter for around $20. I was told to go to the ER if my oxygen level ever drops below 95% (luckily, it never did).

My medical provider sent me an at-home Covid testing kit, with which I performed my own swabs. The sample then had to be refrigerated until it was picked up by FedEx and delivered to the lab the next day. The whole process made me rather anxious as I wondered if I had performed the swabs correctly, inserted the cotton deep enough into my nostrils, and kept the sample cold enough. I was also worried whether the delivery was timely received by the lab.

By the time I received my results, however, I was feeling slightly better and the results indicated "no Covid detected." This was great news and I was relieved that it was probably just a cold. But, my doctor told me there was a fairly high false negative rate (which according to Google is an amazing 30%), meaning that about 30% of people who have Covid may test negative. Based on my symptoms, my doctor was suspicious that I had Covid and I was told to quarantine for 10 days and follow up.

After 10 days, my symptoms had improved greatly and I thought I had kicked the cold. This lasted for about a week, but then the fatigue and headache came back, along with the fever. I read that some people with autoimmune disorders experience recurrent fevers, so I thought could that be it? I wondered if I was just experiencing a new symptom of my autoimmune disorder.

Lingering Symptoms...

The fevers kept coming back. I would feel fine one day, and, the next, have a low fever (between 99-100 degrees), feel terribly tired with a headache, and occasionally feel dizzy and a little nauseous. Ironically, aside from the fever and occasional nausea, the symptoms felt very similar to a flare. As I started reading online, however, I discovered that some Covid patients had long-lasting symptoms that persist for months after their initial diagnoses. These patients are referred to as the long-haulers. The more I read about them, the more I suspected that I had Covid and am suffering from the long-lasting effects it has on some people. I would feel extremely fatigued, suddenly have a headache and fever, suffer terrible brain fog, and sometimes experience numbing and tingling in my extremities. So, I doubled down on my vitamins and added Lysine (which I heard was supposed to help with viral infections).

Now, 6 months after my initial illness, I am finally starting to feel better and a little more back to normal. My head still gets cloudy sometimes and it almost feels as if I'm having an allergic reaction (I felt similarly when I first adopted my cat, which I'm allergic to but have since gotten used to). I worry that my autoimmune condition might make me more predisposed to chronic inflammation and long lasting effects from Covid. But I am also hopeful that the long-haulers, whose symptoms feel eerily similar to autoimmune suffers, may draw more attention and research to the area of immune functions.

I will probably get an antibody at some point to see if I indeed had Covid. If you think you had or have it, please do share your experiences in comments or by email to contact@sjogrensdiary.com.