Every Day is a New Mix of Symptoms
When I wake up in the morning, I wonder what kind of mix of symptoms my husband, Keegan, will have that day. I remember when we first moved in together and how his body seemed to change daily or hourly. One moment total exhaustion, then intense joint pain. What in the world was going on, and is it just one diagnosis or several?
Ankylosing spondylitis is like a slot machine of symptoms
I asked Keegan tonight what it's like to have AS symptoms. He said each day, throughout the day, they change. I knew things changed, but hearing that they change that frequently surprised me. "Chronic illness" isn't synonymous with feeling the same way all the time. Plus, chronic pain doesn't manifest the same all the time. AS brings many types of chronic pain, including enthesitis, joint pain, and "shooters," or sharp acute pain that shoots through his body.
For instance, yesterday, Keegan's fatigue plagued him all day. I could see the brain fog in his face when we ate breakfast. He wasn't clearly present as I was chatting with him about errands we needed to run. Then later in the day, he described horrible pain in his knees. Today we woke up and his energy was back. Brain fog seemed to be gone. Yet, the pain was worse and he needed to medicate more frequently.
To manage symptom changes, Keegan looks to his mind, body, and environment
Accounting for all these changes is a challenge. It's tough to plan a day out, especially as a family, when you don't really know how AS is going to strike that day. Keegan says he looks for a few factors that he knows can impact sudden changes in symptoms: changes in stress, weather patterns, and keeping up with physical activity.
- Stress levels: The number one impact on Keegan's AS is stress. If his stress builds, his AS symptoms will change more frequently and increase in severity. Lately, Keegan's found solace in video games and chatting with friends over the phone.
- Weather patterns: Changes in temperature and barometric pressure always cause Keegan problems. We can't change the weather, but keeping an eye on the forecast helps us plan better. Maybe more yoga the day before or medicating more frequently can prevent severe symptoms.
- Physical activity: While not completely eliminating changes in symptoms, activity helps manage them. This is particularly the case for pain. Physical activity isn't high impact in our world. It's walking around the neighborhood, yoga, and chasing our toddler around.
Why does this all matter?
Keeping an eye on Keegan's symptom changes paid off. After he started taking Humira, he noted changes in a notebook and let his rheumatologist know. She noticed that all his pain and general symptoms were improving, but his hip pain wasn't. This was unusual, so she ordered an MRI. A few weeks later and a couple doctor's appointments and we found out Keegan needed a double hip replacement. We assumed his hip pain was just his AS acting up.
Keegan knows his body. And reporting what his body does and how it reacts helps not only manage AS, but also discover secondary problems. At first, it was a bit stressful to note what he was feeling and how frequently, but now we see it as a science experiment. Let's figure out what causes problems, what new mixes of symptoms mean, and get ahead of severe pain and flare-ups.
Do you use the word disability to describe your AS?