"My name is Liz, I’m 36 and this is my story. March 22nd, I received the first dose of Moderna vaccine; I was 35. I haven’t been the same since. The next day, less than 24 hours later I started experiencing sharp chest pains. At first, I didn’t think much of it; I was trying to ignore it thinking it would go away. It became harder and harder to ignore, as now it was a constant chest pain with sharp shooting pains. April 3rd, while sitting at the kitchen table, I felt my heart racing. My heart rate went up to 173 BPM, then my left arm went numb and I felt my left hand tingling. I felt like I couldn’t breathe. I thought I was having a heart attack. We called 911 and went to the ER. The doctor was asking me questions and I told her I’ve always been a healthy person, no issues. The only new thing I had done was get the vaccine. Then she looked at me and said, “you’re having a reaction to the vaccine. I do not recommend you getting the second dose.” She said my heart was fine, no heart attack and all tests came back clear. If I only knew that was just the beginning, things were going to get a lot worse.
Four days later, I followed up with my doctor and was told it was probably just acid reflux and anxiety. My doctor gave me medication for it, but she did not believe it was the vaccine. I know my body well; I knew something was very wrong. Later that evening, my symptoms happened all over again. This time, my face went numb and tingly and my heart shot up again. There I went again to the ER, this time I was admitted for 3 days. I was able to see a cardiologist and had an echocardiogram plus further testing. Everything came back clear. I was now experiencing anxiety attacks when I had never had anxiety before. After I was discharged, I was so weak, fatigued and in pain. I had to leave my home and move in with family to care for me as I couldn’t be alone; I was no longer independent.
I’m now on a heart medication to lower my heart rate, but no one could tell me why this was happening. My anxiety got so bad: I couldn’t sleep in darkness, I couldn’t have the door shut, the shutters had to be open. Anything would trigger an anxiety attack: loud noise, too much movement, too many people talking, taste, smell, etc. Everything was so overwhelming for me I couldn’t even do simple things like respond to a text message or make a call. I had never experienced anything like this before. I felt like this was not my body, I had no control over it. At this point, everyday brought a new symptom. I began to have major pain in my ovaries so I went to urgent care where they ran multiple tests and everything came back clear. Meanwhile, I was seeing a new cardiologist who agreed to do further testing and put me on a holter monitor. I could not understand what was happening to my body. Then even more new symptoms began: tremors, twitching, shaking, nervousness, muscle weakness, muscle spasms, burning sensation, sharp shooting pains, dizziness, lightheaded, near fainting, shortness of breath, chest tightness, elevated heart rate, insomnia, difficulty walking, with the right side of my body experiencing so much worse. My symptoms even included panic attacks, migraines, slurring my words, memory problems, major brain fog, extreme fatigue, vision problems, tinnitus, right ear pain, hair loss, hard time forming sentences or finding words, and couldn't concentrate. I thought I was dying. Some days were so bad my family had to spoon feed me, help me get dressed, and help me shower.
I went back to the ER, again many more tests and yet, nothing, no answers to why this was happening. At this point I was so discouraged I felt like I was not going to get help. There were some doctors asking me if I do drugs. They told me, “it’s all psychological, it’s all in your head, once you fix your mind you’ll feel better, it’s just anxiety, it’s just stress, you just have to be more positive.” It’s sad how they make you feel like you are crazy. I was then diagnosed with fibromyalgia and the doctor said it was just a coincidence this all was happening after the vaccine but the vaccine was not the cause.
After seeing a neuromuscular specialist, she confirmed I wasn’t the only one going through this. They had similar cases as mine who had their vaccine earlier Dec-Jan and still experiencing symptoms (this was in June when I was only three months in). I was now seeing a nurse practitioner for Psychiatry, all the anti-anxiety anti-depression medication made things much worse. I was now experiencing all the side effects from these medications. I went from taking zero medications to try this one or that one, maybe this one will help you. Nothing was working for me.
Then, one day, I began to get swelling in my face, throat, and entire right side of my body. My right leg was so swollen and the pain was extreme. I made my way back to the ER. They did an ultrasound to see if there was a blood clot and everything came back clear. Still no answers. After all my tests came back clear from cardiology, he suggested I have a tilt table test done. That’s when I was diagnosed with POTS. I have also seen a Rheumatologist and neurologist, but so far all tests have come back clear. Only my ANA was borderline positive. It is now September, five months later and I’m still experiencing symptoms. Unfortunately many doctors don’t know how to treat or help me. Every provider I see is different, they don’t know how long it will last, if it will go away, if it’ll get worse, or be something permanent. All they say is we don’t know what the vaccine can do, it's too new to know. It’s a very scary place to be. This experience has completely changed my life. I haven’t been able to work since April and I'm on the verge of losing my job. Looking for doctors/ specialists, setting up appointments, going to appointments, following up with doctors, and having extensive tests done has been a full time job. I’m also doing therapy to cope with everything I’m going through. Some days are “good days” and some are really bad days. Going from completely healthy and active to feeling homebound and sick with no energy has definitely been a challenge and hard to cope with. I’ve learned to take advantage of my good days and get out and get some fresh air even if my good days only last a few hours. My life has literally changed overnight."