Is It My AS or Something Else?
I recently came across a meme on Instagram that read “can you still get regular sick or is everything corona?” The meme then listed lots of “COVID symptoms,” some real, some so ridiculous like tennis elbow and frostbite. I understand the meme is meant to be funny, to underscore the fact that COVID-19 has seeped into our national psyche, and that our fear of the virus makes us question whether even the slightest symptom means we’ve contracted it.
We could all use a bit of levity right now. But it’s hard for me to laugh at something like that, especially considering the seriousness of COVID-19, along with the number of cases and deaths in this country.
But this meme did remind me of something else. It reminded me of my thought process any time something in my body doesn’t feel right with ankylosing spondylitis. I’m constantly asking myself is this my AS or something else? Whether it’s a new ache in my shoulder, stomach cramping, pain in the back of my head, AS is always my first suspect.
Flu or flu-like flare symptoms
I’m lucky because I don’t get flu-like symptoms or get “regular sick” all that often. But when I do experience flu-like symptoms, only time will tell if I’ve actually contracted influenza or if my AS is playing tricks on me (well that or a flu test).
For me, flu-like symptoms means a combination of chills, sweats, and full-body aches. I first experienced flu-like symptoms five years ago and I seriously thought I had the flu. I spent 4 days in a zombie-like state, drifting in and out of sleep every few hours, depleting what little energy I had just by walking to the bathroom or kitchen. Then my body snapped out of it.
Debilitating back pain
Since back pain is such a hallmark of the disease, and something I experience on a daily basis, I’m a bit more adept at identifying the type and cause of increased back pain. But sometimes, I still get stumped.
Recently I experienced a severe bout of lower back pain that left me bedridden for four days. The pain was so intense that even the slightest twist or bend stopped me in my tracks. My wife urged me to go to the doctor, but I didn’t know how I’d make it to the car. Finally, I called and was referred for an x-ray, thinking I was suffering from a herniated disc.
The x-ray showed no signs of a herniated disc, and my doctor wouldn’t refer me for an MRI unless the pain continued to get worse. It didn’t. My back gradually improved and in about ten days I was back to normal. Did my AS cause that? I don’t think so, but how can I be sure?
Pain in my eyes
My AS happens to come with uveitis. I’ve experienced several uveitis flares, during which I experience sharp, constant pain in my eyes, pain around my eyes and at the back of my head, and sometimes light sensitivity.
But I also live in the desert, which means my eyes get dry. Sometimes it’s hard to tell the difference between dry eye and a mild uveitis flare. Since I don’t want to use my steroid eye drops when I’m not sure my uveitis is acting up, I always err on the side of caution and assume my eyes are dry. But it’s hard to know for sure until one type of eye drops solves the problem.
The more you know, the better
I try to stay informed about my ankylosing spondylitis and all its symptoms. The more I know about my AS, the better I am able to separate AS symptoms from something else. But sometimes I still get stumped and it’s frustrating.
The trouble is, the disease is systemic and could potentially affect my entire body. So, it’s hard to know if this pain or that pain is from my AS or something else (without clear evidence of an injury). I know that not everything is associated with my AS, but that’s a hard conclusion to come to when it can affect my daily life so dramatically.
Do you use the word disability to describe your AS?