The Question that Keeps Me Up at Night
There's a question that keeps me up at night. Could my husband, Keegan, be suffering from more than just AS? What if his fatigue is chronic fatigue syndrome? What if his uveitis is caused by something else? What if? What if? What if? I toss and turn in bed at 3 am filled with these questions. I'm not sure if Keegan goes through anything similar. (I hope he doesn't) The constant stream of hypotheticals gets my heart rate up, but it's also helped us in the past. My own strength becomes my weakness: I persevere for the truth. But what if there's no more to find out? Could Keegan have more than just AS that's causing his symptoms?
Some context for everyone
Keegan was diagnosed with ankylosing spondylitis about 6 years ago. This came years and years after having back pain, hip pain, and immobility that caused him to be bedridden. We thought our path was so clear! Just get on some biologics and everything would be fine. But it wasn't. Most of his symptoms improved except for hip pain. His rheumatologist thought that was strange, and ordered an MRI. Guess what? Severe osteoarthritis in both hips! A double hip replacement was in order. Woohoo! Our path is clear...maybe?
So, I'm writing this article in the midst of one of my hypothetical episodes
Lately, after having read an article about AS and fibromyalgia, I've wondered if Keegan has that now. I struggle as I search more and more online about AS and fibromyalgia. I check the boxes off on WebMD's symptoms list. Yep, widespread pain. Yep, fatigue. But am I just becoming a delusional arm-chair doctor? Or could Keegan actually have this? It doesn't seem unreasonable given a possible 25% comorbidity rate with AS. And yet, I feel like I'm going crazy. How do we bring this up with his specialist so it doesn't sound like I've been searching for hours online? I remember these searches when Keegan's symptoms first started and how difficult it was to get a doctor to listen. I don't want that to happen again.
As a caregiver, it's hard not to try to fix things all the time
Sometimes, like tonight, I feel desperate to help Keegan. It's so hard to watch him go through pain every day. Even just sitting with that emotion as I write this article makes me cry. Our default, as humans, is to help each other. And for whatever reason, I've taken it upon myself to try to find the answers to Keegan's mysterious and ever-changing symptoms. Because having an answer gives me hope. These symptoms challenge me daily in ways I never anticipated. I feel like I have some control over the chaos when I fall into the black hole of Dr. Google. Maybe, just maybe, I'll stumble upon some answer that will solve all of Keegan's problems! Something that will make his pain will go away. Or make the fatigue leave.
What to do next?
I ask you, dear AS community, what do I do next? How do I keep myself off of Google? How do we bring up concerns about Keegan's pain without sounding like asking for opioids? How do we get an unbiased answer to the question, "Does Keegan have fibromyalgia?"
We want to know what the doctor doesn't ask about. Will you take our short survey?