It took me almost three weeks to recover from the Covid-19 vaccine, I think?

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As of April 21, I’m fully vaccinated against Covid-19, meaning I’ve had two doses of the (Pfizer) vaccine and my second dose was on April 7. I had some health issues after each dose that I suspect were long-lasting side effects, and I wanted to share them here because I’ve seen so little written about this. Note that I am not a medical professional; I am just sharing my own experiences. 

I had my first shot on the morning of Wednesday, March 17. I started feeling tired that afternoon and took a nap. I slept pretty well that night, and napped again the following day. On Friday I felt pretty good, and I thought that was the end of it. But over the weekend I had a low appetite, some nausea, and some other GI irritation. Going into the next week (of March 22), I started having cold symptoms: fatigue, sneezing, congestion, sore throat and a mild fever (99.1-ish). Those lasted for a few days and I was feeling pretty okay by the end of the week. 

I got my second shot on April 7. I felt fine that evening and a little tired the next day, but that was all. But then, on Friday April 9, I developed chills and another mild fever (low 99s), which lasted for about 36 hours. On Sunday I felt good, but on Monday (April 12), I developed GI symptoms again that lasted about 48 hours. Another round of cold symptoms followed: lots of fatigue, runny nose, sneezing, sore throat, and some serious brain fog. These continued through the weekend of April 17-18. I’ve felt a bit better each day since then, but some mild fatigue has lingered, and I’ve slept hard every night, which is unusual for me. 

I wouldn’t have thought much of it, except that the pattern of post-vaccine side effects were so similar both times. I wondered if maybe I had a virus, but nobody else in my household had any signs of illness. My instinct tells me that these waves of symptoms were the way my body mounted its immune response to the vaccines. 

I asked on Facebook whether anyone had had prolonged symptoms after their shots, and I got some responses in the affirmative. In particular, some of my friends with fibromyalgia (which I also have) said they had longer reaction times, as though the vaccine had perhaps triggered a fibromyalgia flare. Some of what I experienced felt that way, too, especially the fatigue, malaise and brain fog. Anecdotes are not data, but it seems like an experience worth noting. 

It’s now three-plus weeks since my second shot, and I’m pretty much feeling back to normal. I’m grateful to have this protection from Covid-19, and don’t regret that I got vaccinated. But my experience makes me wonder how many other people had longer recovery times from the vaccine, especially the second one. Dr. Jen Gunter recently noted that our lymph nodes can remain swollen for four to six weeks after the second dose, so clearly our immune systems are still working hard for weeks after these vaccines. 

What about you and your family? Did anyone you know have a longer reaction time to the vaccines?

Finding unexpected validation in the doctor's office

In mid-July of 2020, during one of the early Covid-19 spikes, I developed a cluster of covid-like symptoms: shortness of breath with any exertion and even with talking, chest pain when I breathed, extreme fatigue, mild fever, muscle aches, and an occasional dry cough. I got a nasal-swab test; it was negative, but at the time, false negative rates were roughly 20-30 percent. I also got a chest X-ray, which showed my lungs were clear. After a couple of weeks, the fever subsided, but the fatigue lasted at least a month and the shortness of breath lingered for months. 

My doctor referred me to a pulmonologist, who was brusque and dismissive of me from the first meeting. She told me that the covid test I’d had -- a gentle swab inside the opening of the nostrils, not the one that goes all the way to your brainpan -- was garbage.

But she also told me that, since I’m fat, it was more likely reflux causing my lung symptoms. And also, because I sometimes have trouble sleeping, I probably also have apnea. (She wasn’t just a pulmonologist, but a sleep doctor). 

I tried explaining to her that I have sensory processing disorder, and I wake up at the slightest unusual noise or movement at night, and that’s why I don’t sleep well. “It’s possible that you have … whatever that is,” she said disdainfully, “But apnea is very common in people of your size.” Never mind that we were on a video call and she could only see me from the shoulders up, and had no idea what size my body was.

Unfortunately, I’m accustomed to having interactions like this with doctors. I’m fat, I have fibromyalgia, I’m neurodiverse and I’m well educated on my own health. I do a lot of self-advocacy in the doctor’s office, and some doctors don’t like it. They also don’t always know how to handle it when someone turns up in their office with so many unfamiliar conditions (even though none of them are particularly rare). 

I stopped seeing that pulmonologist. My GP put me on a steroid inhaler, which was the first thing to really bring my lungs any relief. After a month of breathing freely, I met with a different pulmonologist, who took my history again. He said right away that my symptoms strongly suggested I’d had a virus that affected my lungs, and that covid was entirely possible. He also said that lasting shortness of breath was common after these kinds of viruses, and that sometimes a miscommunication between the nerves in the throat and the nerves in the chest/lungs can be part of the problem. 

I laughed. “No, it really can happen,” he said.

“I believe you,” I said. “I have fibromyalgia -- my nerves misfire pretty often.”

He didn’t question it. At all. 

He referred me to UCSF’s voice and swallowing center, where they would check for any signs of a nerve issue. On the day of my visit, the speech-language pathologist talked me through my history. Again, she mentioned the potential for nerve systems misfiring. When I mentioned I have fibromyalgia, she nodded knowingly. “It’s really common for folks with fibromyalgia to have these kinds of issues. We see it all the time.”

My body warmed with relief. It’s rare enough to find healthcare workers willing to take fibromyalgia seriously, let alone ones who are familiar with treating patients like me. 

“We also find that this happens in patients who have a lot of sensory sensitivities,” she said. 

“That’s me, too!” I said. Of course, I’m not at all surprised -- people with sensory sensitivities are more likely to develop chronic pain conditions, and vice versa. But not that many people in health care seem to be aware of that. 

I thanked her for being familiar with these things, and she smiled. And then, when it came time to numb my sinuses and run a scope through my nose and down into my throat, she did two things that really helped: One, she explained everything she was about to do. And two, she got the tiniest scope possible, the one they use for infants, so it would cause me the least discomfort. 

I’ve written before about having to craft my own healthcare procedures. It’s exhausting, and shouldn’t be necessary, but it’s also worth it. So it was a huge surprise and relief to be taken care of -- without having to do any of the work myself. Why can’t more medical appointments be this way?

I still don’t know if I had Covid-19. My lungs feel a lot better, and the voice and swallowing center didn’t find anything wrong with the nerves in my throat. And I’m grateful that, at that appointment, I felt genuinely seen.

Coming Out: Fibromyalgia

“When we feel vulnerable sharing something with someone, I think it’s because we are actually judging or shaming ourselves ... And then we’re afraid the other person will as well. We’re afraid they will confirm our worst fears about ourselves. That’s why it’s scary. We fear their rejection because we’re really fearing our own rejection of ourselves.” —Kara Loewenthiel

“The reward for conformity is that everyone likes you but yourself.” —Rita Mae Brown

I have fibromyalgia.

I was formally diagnosed a couple of years ago, but I’ve been living with it in some form since my early 20s. For years I thought it might be something else: rheumatoid arthritis, maybe, or a connective-tissue disorder. The diagnosis surprised me, but over time it has come to make sense. 

The definition of fibromyalgia, as it stands now (the medical world doesn’t really understand it very well yet), is that it’s a neurological condition in which things that shouldn’t hurt do, and things that should only hurt a little hurt a lot. When I injure myself, my body heals but the pain lingers — my nervous system “learns” the pain, then struggles to unlearn it. Fibromyalgia often comes with fatigue, general aches, brain fog, trouble sleeping and other symptoms. For everyone who has it, it’s a bit different. 

This is what it’s like for me: I’m in a little bit of pain every day, somewhere in my body. Often, it’s more than a little pain. Today, it’s focused in a spot next to my right shoulder blade. But I’m achy elsewhere, too — in my shoulders, my arms, my legs, my feet. Sometimes, I also feel like I’m coming down with the flu: my throat and eyes are scratchy, everything aches and I feel like I could sleep for days. I have one or two days like that each month. Even on a good day, my body gets stiff quickly, and standing up when I’ve been sitting a while means walking gingerly until my muscles joints loosen again. 

Fibromyalgia flares often come on when I overdo it, physically or emotionally. If I spend an hour gardening or take a long walk, or even if just have a night of bad sleep, I’ll have flu-like symptoms the next day. It’s similar if I get really upset or stressed out by something. Sometimes it’s worth it — worth it to be fully alive and active in my body or in my emotions, even though I’ll likely feel lousy the next day. But generally I try to do things in moderation. 

To look at me, you wouldn’t guess anything was amiss. This is what it means to be invisibly disabled.

It might sound like I’d be miserable all the time, but I’m not. There are bad days, and there are days when I grieve or feel like I’ll never feel good again, but they are pretty rare. This is my baseline and I’m pretty used to it, just like you’re used to yours. 

The most common treatments for fibromyalgia are anticonvulsants like gabapentin and pregabalin, thought to keep the nervous system from overreacting and causing symptoms (they’re also used to prevent epileptic seizures, and to treat shingles pain). I haven’t tried them, largely because I am so sensitive to medications, and these ones are notorious for being difficult to get used to (and more difficult to come off of if they don’t work). 

Instead, I take low doses of ibuprofen, which helps keep my baseline pain levels down. On bad days I have a whole menu of things to try: stretching, foam rolling or rolling against a pinky ball, THC or CBD tinctures, cannabis salves, heating pad, a bath with epsom salts, massage, chiropractic care, a nap. I’ve tried plenty of other things that don’t help, and I’m not looking for any advice. The best preventatives are good sleep, lots of hydration, and not too much (or too little) exercise or stress. But there’s only so much control I have — which is to say, not much. I’ve spent a lot of time coming to terms with the idea that some days I’ll feel like crap, but they will pass. 

The causes of fibromyalgia are still not well understood, but some research points to chronic stress, especially the kind of stress we may carry if we’ve experienced adversity and trauma before we become adults. It’s nice to see this research making its way into mainstream publications after doctors not taking fibromyalgia seriously for decades.

I’ve kept this to myself for a long time, not wanting to be treated as different or less capable — or conversely as some sort of inspiration, achieving so much in the face of adversity. Ultimately I can’t control what others think, and the older I get, the less energy I have for hiding.