The Ticker Tape Parade of RA Symptoms
Last updated: October 2022
Yesterday I was relaxing in the afternoon and I started to feel my left ankle throb. Feeling surprised, I looked down and thought, “What now?”
I know by now I shouldn’t be surprised by a new ache or pain, but I am good at forgetting the parts that act up only once in a while. We all have them- the stubborn joints that refuse to cooperate no matter what new drug we decide to throw at them and the joints that pop into consciousness now and then, usually when our disease is more active.
Seemingly endless RA symptoms
It’s getting close to my regular 6-month infusion, so I’m getting a lot of sneaky problems starting to show up: the throbbing left ankle, the intense pain and fatigue, insomnia, and weird hives. I’m starting to feel like a walking science experiment again.
One thing after another
It’s like a ticker tape parade of odd bodily problems that only people with chronic illness can truly relate to. When the disease is active, our poor bodies are in chaos, and we are the casualty. When it isn’t the actual disease, it’s the medications we take. I joke with my doctors that the side effects listed on the last page and last paragraph of the information you come home with will be the ones I end up with. That has actually happened to me more than once.
The problem I’ve discovered is that the lower on the list your symptoms fall, the less likely it is that you will be taken seriously, but that’s another story for another day. The point is, I often live with things that steal my comfort in one way or another and I have no idea where and what the discomfort will be until it actually happens.
Navigating the aches and pains
Once I realize I’m in a bad phase, I start to rein in the plans I've made with people and triage anything that needs attention. I can strap an ace bandage on my left ankle and use aloe and cold packs for the hives, but I have to deal with insomnia and fatigue as best I can. These are the internal conversations I start with myself. The external conversations are always harder- who I should tell what to. For me, I use the need-to-know approach. My mom, who lives on the other side of the country, doesn’t need the gory details, but the people I’m spending time with might.
Juggling my life and RA
This life-balancing act is getting easier over time, mostly because I have less angst and more resignation that comes with the discomfort. I’ve learned that many of the things that pop up don’t stick around over time, and since I’ve experienced many of the symptoms over the years, I have my go-to things to soothe my body and mind. Netflix has helped, but so has having a mindset of trust- trust that this too shall pass, that I have the support that I need to get through it, and that if it doesn’t go away, I’ll be able to handle whatever my new normal is.
So, as my science experiment continues and I count the days until my infusion, silently praying that the medication doesn’t give me new issues to handle, I tell myself that my life may not be easy, but it’s the one I have and I’m going to make it the best life I can.
Did you know rheumatologist Dr. Donica Baker is answering community questions?
Join the conversation