I had my second Covid-19 vaccine yesterday (Pfizer). I am nervous each time I get a vaccination. It is a perfectly common experience to be nervous before a vaccination for a variety of reasons. I feel nervous because I worry about a flare-up of my chronic pain.
This concern comes from the fact that a large part of my time and energy is directed towards micromanaging my life so that I can do all the things I need and want to do. A flare-up can throw a spanner in the works of my management plan.
There was never a question that I was going to get the Covid-19 vaccination as soon as I was able. In my thinking, any risk of a flare-up from the vaccination was way outweighed by the risks of getting sick with Covid-19. Even if I wasn’t a severe case, illnesses to tend to lead to temporary flare-ups of my pain; so a novel virus my immune system was unfamiliar with was very likely to cause a flare-up. Beyond the personal benefits and costs, getting vaccinations is something I choose to do because for any illness the more of us who can vaccinations, the less risk there is for those in our communities who are at higher risk and who can’t get the vaccination themselves.
I am desperately tired today and my pain levels are up. I’m writing this pinch in my pajamas. I got the vaccination around 9.30am yesterday, by 12.30pm I was asleep. It is now 6pm the following day and I estimate I’ve spent 19 of the past 32 hours asleep. Hopefully this means that my immune system is learning to recognise the spike proteins on the outside of the SARS-CoV-2 virus, so that if I encounter the virus I won’t get sick with Covid-19 and have less chance of passing it on.
Aside from a bit of a sore arm and higher pain levels across my body, the fatigue is my only side-effect and the most disruptive one. Even when I’m awake, I’m not up to doing much except lying in bed or on the couch, reading or watching TV. The arm pain isn’t really registering unless I move suddenly, I can even lay on it. The increase in my regular pain is not stopping me from sleeping.
I had a similar experience after the first Covid-19 vaccination, though with less extreme fatigue. I was hopeful for a similar experience for the second, but still apprehensive about a flare-up. Everyone is different and no one can tell us exactly what we’ll experience.
I’ve had several people with chronic pain contacting me in the last few months asking what I think about getting the vaccine. I’ve shared my worry and decision process with them, an example:
Two disclosures, I’m pro-vaccination generally. And I’m not a medical doctor and don’t know your medical history. Now my opinion: Everyone who can, should get vaccinated because a) getting Covid-19 will be way riskier and worse for an individual’s health than side effects from the vaccine are; especially for those of us with underlying health conditions, b) getting the vaccination protects others around you, including those who can’t get vaccinated. I’d suggest, based on hearing from people with health conditions who’ve had it, booking a day off work/study after. Most of them have been fine but some have felt a bit rotten. I’m a little scared of having a flare-up but I’m going to get it. Here are some sources from the experts I trust: https://www.pmcsa.ac.nz/topics/covid-19/covid-19-vaccines/
I’m sharing my experience here, not because my experience will be what you experience, but because there is a lack of acknowledgement of the concern those of us with chronic illnesses have about the risk of flare-ups when we get the vaccine.
When I went searching for information beyond my own experience and friends’ experiences with chronic pain + the Covid-19 vaccination + flare-ups, I found people in support groups sharing their experiences and one video from an Arthritis organisation in the US. Today I found a short research abstract (Machado et al., 2021) reporting flare-up occurrences from 1519 people with rheumatic and musculoskeletal diseases (RMDs) who received a Covid-19 vaccination. 5% of those 1519 people reported “disease flares” and 1.2% reported “severe flares”.
There are two quotes I want to highlight from Machado and colleagues’ abstract:
- “Vaccines are a key pillar of public health and have been proven to prevent many serious diseases. However, vaccination also raises questions, especially for patients with inflammatory RMDs and/or treated with drugs that influence their immune system.”
- “The safety profiles for COVID-19 vaccines in RMD patients was reassuring. Most adverse events were the same as in the general population, they were non-serious and involved short term local and systemic symptoms.”
The first quote acknowledges that people with conditions impacting their immune system have concerns. Such conditions are what the Machado abstract was focused on. What about chronic pain? From the 2019/2020 NZ Health Survey it was estimated that 19.6% of New Zealand adults (where I’m writing from) experience chronic pain. That is 785,000 people. There will be others with similar questions and concerns about how the vaccination will impact their day-to-day lives. Living with any chronic illness requires balancing the various aspects of life carefully. It is not wrong or silly to be worried about upsetting this balance.
The second quote describes the 5% “disease flares” and 1.2% “severe flares” as non-serious and short term. I’m sure, based on the definitions the researchers were using, that this is accurate. However, for the people experiencing these flare-ups there would have been disruption not captured by percent categorisations.
Understanding and acknowledgement of concerns of flare-ups in chronic pain and other chronic conditions may help more people to feel comfortable to get the Covid-19 vaccination. Part of the reason my concerns were outweighed by the positive outcomes of vaccination is because I know I can take time off from work if I need to and I don’t have any one who is relying on me for care. Many people with chronic pain will not be able to take time off work and/or will have people who rely on them.
If you are in a position to help someone with chronic pain if they need it after vaccination then please do. If, in the unlikely chance, that someone reading Pinches of Pain is in Government, please consider what you could do to acknowledge concerns and in terms of policies around leave and support for people who have flare-ups in their chronic pain* when getting the Covid-19 vaccination.
If you are reading this pinch and have an experience you feel comfortable sharing, please post in the comments.
It’s now 7.30pm and I think this is all I can write today. I did want to capture my reflections on having the Covid-19 vaccinations today though, while I’m still feeling the associated fatigue and pain.
*actually anyone, as anyone can experience side-effects.
1. Machado P. M., et al. (2021). LB0002 COVID-19 vaccine safety in patients with rheumatic and musculoskeletal disease. Annals of the Rheumatic Diseases 2021, 80, 199-200.
Pinches of Pain 
Kia ora koutou, thanks for this Hazel, your considered insight is always worth a read. Thankyou for sharing your experience and expertise with us all. When I first got sick many years ago with what has now been diagnosed as fibromyalgia (chronic pain), it was thought that it was a preceding vaccination (rabies) that had initiated it. Though the doctors now have alternative theories as to what triggered my chronic illness, they have told me in the years since to avoid getting vaccinations if at all possible, just in case.
As such, I was very nervous about getting the covid jabs. But like you Hazel, I believe the risks of covid outweigh the risks of vaccination and I also want to get vaccinated for those that can’t, including my sister.
I was pleased to recover relatively quickly from the first jab. I felt tired and achy for a couple of days. I also had a sore arm, which wouldn’t have been a big deal, except for the fact that it stopped me sleeping properly as I couldnt lie on that side, and sleep derivation is a major trigger for my chronic pain. But I recovered all good and now anticipating my second. Like Hazel, I am also trying to allow time for rest and recovery afterwards, a couple of days ideally.
One thing I wanted to add that’s been important for me is also allowing time beforehand to ensure that I’m in the best condition possible before getting the jab. So that my body is as strong and healthy as can be (which will look differently for everyone, depending where you’re at) before getting vaccinated. In the past, when I got the original set of vaccinations which may have initiated the fibromyalgia, I was tired, stressed and run down and so I guess my body didn’t have the strength it needed to fight off the vaccine contents.
That’s my thoughts anyhow. My best wishes to anyone who’s worried about getting the vaccine – know that you’re not alone and there’s a community out there who understand what that’s like
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Ngā mihi nui Ro mō tō kōrero, for sharing your concerns and how you approached getting the Covid 19 vaccination. Some overlaps and some differences in how the first vaccination was for us – regardless, a shared community who gets it x
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An update: I worked a half day yesterday and have been working since 8am today. The exhaustion has eased and I am able to stay awake and focus. My pain levels are still up a bit (and probably more noticeable now I’m not sleeping so much) but manageable with more regular panadol. Getting back to my regular daily management strategies.
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