Age: 58.0
Sex: F
Vaccine: COVID19
Symptoms: Pain in extremity
Clinical narrative: Let me first of all say that I have a long history (since childhood) of my body sometimes reacting extremely to something that normally causes no issues. It is very likely that my current issues are simply due to that and not at all due to my COVID vaccines. My main doctor asked me about my vaccine timeline, when I told him about my PICC line problems (detailed below), but it seems like my issues would've happened regardless of any vaccines. I'm just entering this info in case you find that other people are having similar experiences. My only reaction to my first COVID vaccine on 2/24/2021 was soreness in my right arm that lasted for several days. In fact, my reaction was so mild that I was afraid I had not made any antibodies as my immune system had been suppressed from the Rituxan infusions. We'd held off on those infusions so my body would develop some B-cells and I could have the vaccine. Later, tests after my second shot showed that I made lots of antibodies. Several weeks after my first COVID vaccine, I was unexpectedly hospitalized following a routine bronchoscopy when a serious infection was discovered in my lungs. In hindsight, that infection had been there for at least a year or two. The clinical staff inserted a PICC line in my right arm on 3/18/2021. Two days later, as we drove six hours to our home, my arm began to ache. Over the next several days and weeks, that escalated to non-stop discomfort where it felt like my right arm was trapped in a tight blood pressure cuff. Initially, we all just thought that I needed more time to get used to the PICC line (with no way of knowing how the problem would escalate), so I went ahead and had my second COVID-19 vaccine on 3/22/2021 in my left arm. Again, the only reaction I had was to get a sore left arm. My right arm muscles continued to worsen, clenching up until my arm could not extend beyond a 90-degree angle and was largely non-usable, with my right hand going numb. I then broke out in a rash on that arm from wrist to close to my shoulder. X-rays/ultrasounds revealed that the PICC line was inserted correctly and there were no blood clots. When the PICC line was removed, I regained sensation in my right hand, but still could not use my arm. My rheumatologist prescribed gabapentin to settle down my nerves, but I broke out in a rash from thighs to neck, including internally in my ears, anal opening and vagina. After that, I just used ibuprofen and a heating pad on my arm and eventually it became usable again although it still is not fully OK. On 5/3/2021, I had a lobectomy to remove the infected right, upper lobe. Prior to the surgery, my right arm had recovered to the point that I could do most things with it (although it still felt weak). Following the surgery, I did great until six days afterwards when the nerves in my abdomen became so inflamed that even the lightest touch of fabric on my skin was almost unbearable; and the vibrations from being in a car made me grit my teeth and break out in a sweat. Additionally, my legs started having spasms every morning when I awoke, with those spasms racing up and down my legs and into my chest where the surgery had occurred. Eventually, I could stand up each morning, but I have to brace myself against the bed, so I don't fall down because my legs buckle like a newborn baby giraffe until the muscles regain control. That is still going on. Three weeks ago I also developed joint inflammation which I never had before other than occasional knee pain. My doctors told me that these are very unusual and unexpected reactions to this surgery. I am in surprisingly excellent health other than the autoimmune issues. Another thing, cytochrome P450 genetic testing shows that my body does not metabolize some medications correctly. I've also been diagnosed with malignant hyperthermia after a bad reaction to succinylcholine. I might be having these issues due to a medication/sedation reaction; a new flare-up of vasculitis; my body just having one of its strange unexplained reactions; a combination of all those or something else. Since the issues began between my vaccination dates, I am just letting you know what happened. I would not say this was an adverse vaccine event, but I know you need people to report unusual reactions. So here's my story. If you make sense of it, please let me know, because it has baffled my healthcare team and me! I am enrolled in a study of vasculitis patients who have had the COVID vaccine and will send them this same info. So many healthcare professionals have been involved at various steps these last few months that none of them has all the details, which is why I did not list one of them for you to contact. However, I could put you in touch with them and could also share my recent lab work if you need that.