Enthesitis: The Other AS Pain
I'd never heard of enthesitis until I joined the AnkylosingSpondylitis.net team. Keegan, my husband with AS, describes his pain to me in several ways. (This includes "shooters," "joint pain," "hot pain," and "I feel like I just got hit by a bus.") But after I read more about the types of pain associated with AS, I wondered if Keegan suffered from "enthesitis."
Is enthesitis a symptom of ankylosing spondylitis, and what's it like?
I remember the first night I stumbled over this article on our site about enthesitis. I remember Keegan describing some pain as "hot" and wondered if this was the scientific description for one of his frequent pains. Indeed, it was. Enthesitis is pain where tendons and ligaments attach to bones caused by inflammation. For Keegan, this pain is widespread and daily.
He broke it down like this: his chronic pain from AS can be categorized into different areas and types. There's pain within joints, enthesitis or pain in ligaments, muscle pain, and "shooters" or pain that feels like pain shooting quickly and randomly. On a daily basis, enthesitis makes up about 25% of the pain he feels. I asked him to describe it to someone who doesn't have AS and he said he feels it's like growing pains. That tight, almost sharp and hot sensation. For Keegan, it's not localized like some others I've read online. Some folks may feel enthesitis only around one or two joints. It's all over for Keegan.
What treats Keegan's enthesitis?
"How do you treat that pain?" I inquired tonight talking about his pain. He looked at me and said, "Nothing." That's surprising for me given most of his other pain is managed fairly well with Humira, medical marijuana, and regular exercise. Enthesitis, however, is a challenge for Keegan to manage with medication. Rather, he's found staying active with gentle exercises like walking and yoga helps. It doesn't completely take the pain away, but inactivity often creates more pain.
Staying active also helps him sleep better at night. Why is that important? Keegan told me that when he struggles to stay asleep at night, it's because he's not tired enough to sleep through the pain. The insomnia results in Keegan focusing on the enthesitis pain all night. When things get really tough, he'll often get up and stretch, take some medicine, and walk around the house to settle down his mind and body.
Just one piece of the chronic pain puzzle
It's been a long journey to get Keegan diagnosed with AS. Our next journey is finding a way to better manage his pain. Knowing how to talk to his doctor about his pain is key to helping treat it. Learning that AS can cause many types of pain within the same person is relieving and overwhelming simultaneously. For Keegan, we have a great rheumatologist and pain management specialist specializing in spinal pain.
Now we're on the search for how to better manage enthesitis. Have any of you in the AS community found treatments? How do you get through a tough enthesitis day?
Do you use the word disability to describe your AS?