This is my my story:
I was diagnosed at 30 after being shuffled from my primary care doc to physical therapy to a pain management doc who have me steroid injections in my SI joints, lots of Vicodin and Percocet, and ultimately performed radiofrequency ablation on my lumbar spinal nerves. None of it worked, and I still didn’t have an official diagnosis, so I took it upon myself to find a rheumatologist. After an MRI showing inflammation/fluid on my SI joints and a physical exam, my rheumy finally diagnosed me with AS! I was both relieved and terrified at the same time. We tried sulfasalazine, but that didn’t work, so we went to Enbrel. I gave myself injections for a couple of years, but recently decided to stop because I didn’t like getting sick all the time. Plus, I was on Cymbalta (prescribed by my neurologist as a migraine preventative), which I knew was also used for general pain management. Well, three weeks ago, I asked my neuro to start weaning me off of Cymbalta b/c I’d gained nearly 40 pounds since I started taking it. The withdrawals have been horrible, but I just want it out of my system. My SI joint pain (along with my ankles, knees, shoulders and neck, plus ongoing migraine) was so awful the past two days, I spent most of my time in bed. Not sure what I’m going to do now, but I’m hoping this recent flare was just a symptom of the Cymbalta withdrawal and it will pass.
Looking back, I realize that I developed symptoms of AS as a teenager. I was diagnosed with chronic migraine and “tendinitis” in my knees at 16. Now I understand that those were the first signs.
In college, I was in a horrible car accident, and afterwards I was left with lingering c-spine and shoulder pain. My lower back/SI joint pain came along in my mid-late 20s. I thought I could handle it, figured it was just part of “getting older”, until it got so unbearable that I sought medical help. And I’m so glad I did – so glad to have a diagnosis and to have found a community of people to share my story with who understand my experiences.
For the record, I am employed full time and try to stay as active as possible. I used to run, but as-of late that’s been a mechanical impossibility for my body. I’m hopeful that once I lose the extra weight I’ll be able to start again! I also have a supportive family and group of friends and coworkers, but nobody understands quite like others who share the AS diagnosis.
Missouri, United States of America