Q: What was your life like before you got the vaccine?
I was an active, healthy person. Loved playing tennis. ICU nurse.
Q: Would you like to share your reasons for getting vaccinated?
Since I had such high risk of exposure at work and was worried I’d give covid to my family.
Q: What was your reaction, symptoms, & timeline?
Less than a week after the first one, I developed redness and swelling of my outer ears. I went to my PCP who said it might be an ear infection and was put on antibiotics. He said it had nothing to do with the vaccine. I got the second one and the redness/swelling came back, but now it was also inside my ears, and the pain was excruciating. I got put on antibiotics again but had no relief in my symptoms. I then developed pain in my lower spine and pain in the back of my head. I started having leg weakness and tremors, muscle twitches, muscle and bone pain, and numbness/tingling in my legs. Also severe brain fog and memory issues. I saw an ENT who put me on steroids, sent me for bloodwork, and referred me to an immunologist. The ENT said he thought I was having some type of immune reaction. By the time I saw him I was in such rough shape, I ended up in the hospital four days later. I was admitted with neurological symptoms. The neurologist thought I either had a brain tumor or that it was an initial MS demyelinating attack. Imaging and tests rules those out. I became extremely hypotensive while in the hospital, and they ran a lot of blood work and tests, but told me they didn’t know why this was happening. They just kept giving me fluid boluses to get my blood pressure up. I was discharged after 7 days with follow ups to see a neurologist for more testing and a rheumatologist. My ANA was found to be 1:1280. So I was worked up extensively for autoimmune diseases. My symptoms kept getting more severe, and I barely could walk for several months. I was on steroids for months, which was the only thing keeping me from not being able to walk. My rheumatologist is calling this a post vaccine syndrome. I’m now on immune modulation medication. I got tested by the neurologist and confirmed positive biopsy for small fiber neuropathy.
Q: What is your life like now, after getting the vaccine?
For over a year I saw my health and body deteriorating, and I felt like I was dying. My doctor told me I could die if we didn’t get things under control. My whole family thought I was honestly dying. The pain I experienced was something no one should ever experience. I couldn’t do anything. I was either in bed or on my couch for months except to go to doctor appts. I couldn’t work for 7 months. Now I am a lot more functional from medication and treatments I’ve gotten. But I’m still always in pain. And some days are worse than others. You never know what you’re going to wake up feeling like. The symptoms can be really scary, and I’m afraid to ever feel as bad as I had ever again.