RA or Other? Distinguishing Symptoms and Self-Advocating
I live with several comorbid conditions along with rheumatoid arthritis. Some of them have distinct symptoms, but many of them happen to cause similar responses in my body.
Recently, I've found myself struggling emotionally with not knowing the exact cause of the pain I'm feeling. It may seem simple to someone who's not chronically ill ("Just call your primary doctor"), but when you have a list of chronic illnesses and another list of specialists just as long, it's really challenging to determine who to reach to and when, what to ask, and how to make progress in helping my body, which is obviously shooting off some type of warning signs.
I thought maybe I just needed time to recover
Last summer, I had surgery on a hernia in my esophagus. It had nothing to do with my rheumatoid arthritis — but I found that during my recovery days, several of the aches and pains I struggled with felt very much like my RA rearing its head. I'd get up in the hospital and go for a walk around the floor to find that my knees were red and swollen. My shoulders ached in a way that only RA has affected me before.
I immediately found my brain wondering how this had happened, how something completely unrelated had caused a flare of my relatively stable RA, and what I should do about it. The advocate in me screamed, "Send a message to your rheumatologist," but the exhausted, overwhelmed patient in me thought, 'Maybe I can just wait this out. Maybe it'll just be a few days. Maybe I just need to give it time. Surgery affects the whole body — even the joints that have RA — and maybe it just needs to recover."
Not knowing caused anxiety
For those of you wondering, it wasn't just during the few days in the hospital after surgery that I felt like this. It was the first few weeks at home in my recovery. I didn't want to jump the gun and email my doctor, mostly because I wasn't even sure it was my RA flaring. It was a collection of symptoms, in the in-between space, and I was left not knowing.
The not knowing caused anxiety in the depths of my soul. What if something was really wrong? What if I was ignoring something that needed attention, imaging, medication?
I spent a lot of time spiraling, to be honest, and then I found small ways to pull myself out of this emotionally-charged, fear-filled place.
This or That
Do you struggle knowing if your symptoms are from RA or other condition(s)?
Taking charge of an uncertain situation
Here are a few strategies that helped me sort out my symptoms and manage this anxiety-inducing experience.
Keeping a symptom log
I kept track of what hurt, where, when, how much, and if I took any medication (and whether or not that medication helped).
Keeping an accomplishment log
I kept track of what I'd done during the day that would count as an accomplishment, no matter how big or small. Some days it was as simple as moving my setup from my bedroom to my living room for a change of scenery and comfort. By keeping this log, I could see that even though my body was confusing and overwhelming and causing me anxiety, I was still functioning in small ways, at least.
Having a "what if" list
This might seem counterintuitive, but having a "what if" list felt most helpful for me. Like, what was the worst case scenario that could stem from my current situation, and if that happened, what would my course(s) of action be?
How do you manage the uncertainty of comorbidity symptoms?
If you've found yourself in the emotional vise-grip of not knowing, of feeling symptomatic but being unsure where those symptoms were coming from or how they were affecting your overall treatment plan and goals, how have you managed? I'd love to hear what you'd add to my list above.
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