Life Before And After Fusion
My husband, Keegan, walked with a limp for a long time before he was diagnosed with AxSpa. I remember one night he dragged his leg from where our car was parked several blocks away to our apartment. Deep down, I knew something was wrong. How could a 23-year-old exhibit such severe immobility and pain? Unfortunately at that time in our lives, we didn't have insurance for him. So we didn't take him to a doctor.
He attributes this phase of his AxSpa journey to when his sacroiliac (SI) joints fused. It was a particularly difficult period for him. I was in graduate school, and he was working as a barista in a local bagel shop. I asked him recently how his AxSpa has changed over the years, and the pre- and post-fusion phase is the most dramatic shift in his symptoms.
AxSpa pre-fusion was a whole other world from today
Keegan grew up doing taekwondo, so he was used to the aches and pains associated with working out, a bad fall, or muscle spasms. But before his fusion, he suspected his hamstrings were torn or sprained. For years, the pain would radiate from the back of his pelvis down his legs to the back of his knees. I would spend hours Googling stretches and massages. But nothing really helped. Then came the back pain and the immobility. Soreness and achiness transformed into a much larger beast. He describes the pain as being like a hot knife in his joints. Sitting was difficult and it'd take 10 minutes to relax in a chair. One that would result in Keegan becoming bedridden for a year, having to use a cane to walk, and barely being able to go grocery shopping. He would cringe in pain all the time. It was incredibly difficult to witness.
At this point, we got married (postponed the wedding just so we could get to a doctor), got him on my health insurance, and was met with a doctor who didn't believe the severity of his symptoms. We were horrified. The doctor even accused him of tightening up his muscles to appear less mobile. I became angry and begged for X-rays and physical therapy. The X-rays showed total SI joint fusion. The diagnosis was clear.
Then one day soon after, he woke up, and the extreme pelvic pain was gone
His back pain remained, but the intense, deep SI joint pain was replaced by a duller ache. The shooting pains down his legs didn't come back as much. It was a strange relief. And now, his SI joints aren't the main focus for his pain management. (Well, they're not really joints anymore!) Most of his pain is in his lower back, shoulders, and extremities. Humira helps keep the AxSpa inflammation at bay and medical marijuana provides pain relief.
But it made me wonder. Do others have experiences that they can identify as the time their joints fused? Were there dramatic shifts in symptoms? Pain that changed? Let me know in a comment below!
Do you have a question about axial spondyloarthritis you have been trying to get answered?