Yes, the Pain is That Bad
I'm naturally a highly empathic person. In my research of ankylosing spondylitis, I kept reading about the chronic pain but wanted to know more. How painful is it really? What kind of pain? When is the pain possibly another disease? Our go-to sites like Mayo Clinic and WebMD don't really describe pain well to someone trying to empathize with her husband.
Finding the McGill Pain Index
Then I came upon this diagram late one night. The McGill Pain Index describes pain objectively on a scale from 0-50, with 0 being no pain and 50 the maximum amount of pain a human could experience. I had recently gone through childbirth, so I was curious where it was ranked.
What's that trailing behind childbirth? Ankylosing spondylitis! I gasped and sent the image to my husband. Immediately, I researched more into the pain surrounding ankylosing spondylitis and discovered how it's not just bone pain, but other pain as well.
Enthesitis: An underlying cause of pain
According to the Spondylitis Association of America, a complication of AS is inflammation in the ligaments connected to bones, called enthesitis. That means that not only can the pain come directly from the inflammation and bone growth, but also ligaments. My husband often has muscle pain, in which he now takes muscle relaxers to help relieve tension.
Osteoarthritis: The need for joint replacements
No matter how much my husband tried various treatments, his hips always caused him problems. I used to call him an old man with how he would walk around the house. I couldn't believe how bad it was. He's 25. How could he possibly look so immobile already in life? In the summer of 2018 at a quarterly rheumatology appointment, his doctor didn't like how his hip pain was so bad despite being on Humira for over a year. She ordered an MRI and we quickly found out Keegan had severe osteoarthritis in both hips.
AS often affects other joints, and cases of joint replacements were way higher than I anticipated in the AS community. Once doctors determined the only route was a total double hip replacement, I naturally started searching again. In particular, a study found that hip involvement should be looked at regularly. While it was heartbreaking to get the diagnosis, it was a relief to know that joint replacement could bring back mobility and minimize pain.
Report as if it's your worst day
The last tip is to report pain to your doctor based on the worst day. Keegan found this incredibly helpful when communicating to doctors how severe the pain is. This means being clear about the type of pain (dull, achy, sharp, etc.), when it happens (in the morning, all day, etc.), and if anything improves the pain or makes it worse. Pain is data to a doctor. It helps them make clinical decisions. This especially helped when tracking a non-flare up day versus a flare up day. Keegan's doctor decided to increase his Humira from every other week to every week.
Nowadays, Keegan is doing much better. But it's key to learn that there is more to the AS than just bone fusion and inflammation. Pain is there to warn us. Something is wrong. It's worth keeping track of what helps and makes pain worse, especially over time. Doctors are best informed by not what happens in one moment, but over many.
Do you use the word disability to describe your AS?