Getting vaccinated takes a toll on me as someone with Cushing’s disease

Note: This column describes the author’s own experiences with vaccinations. Not everyone will have the same response. Consult your doctor about whether a particular vaccine is recommended for you.

Two weekends ago, I went ahead and got the dreaded COVID-19 and flu vaccines. I am a big believer in the importance of vaccinations, but for me, the shots can result in numbness, exhaustion, and a whole lot of pain that can be difficult to manage.

Every year, I have to decide between one horrible weekend (getting both shots at the same time) or two bad weekends (splitting them up). This year, I chose one horrible weekend and got both shots on the same day.

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My reactions

For me, these vaccines seem to trigger a Cushing’s disease flare-up. Many of my symptoms are exacerbated, especially bone and muscle pain. The bone pain is the worst by far. It’s excruciating. I tend to start taking pain meds before I get the shots, and continue taking them throughout the weekend. Still, I hurt horribly.

I also experience headaches and extreme fatigue after getting the vaccines. I use migraine caps and spend a lot of time in the dark, but I often have to just sleep it off, which means either finding childcare for my daughter or ways to work through the fatigue. On this weekend, I did a bit of both.

The injection site tends to remain swollen and red for several days after I get the vaccines, and I’ve noticed it also feels numb for up to a week afterward.

On top of all that, I also experience flu-like symptoms. This time, I was extremely cold and had horrible shivers. Socks, a hat, and two blankets weren’t enough. I couldn’t sleep until I turned on a heater, put a heated water bottle on my legs, and took several pain medications.

Planning ahead

Since it takes me a while to recover, I choose to get vaccinated on a Friday or Saturday morning so I have the weekend to relax. Otherwise, I’d need to take a day or two off work to have time to take warm baths and sleep. It might seem silly, but if I don’t give myself plenty of time to recover, I feel a thousand times worse.

I also prepare food in advance so that I don’t have to cook. If that’s not possible, I’ll order in. The idea is to do absolutely nothing all weekend. Even the simplest tasks can aggravate my symptoms.

For me, getting vaccinated is necessary, as I’d be much worse off if I caught the flu or COVID-19. Still, it’s tough, and protecting myself is a weekend-long endeavor.

Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.