My story about Anklosing Spondilitis isn’t too long. I have battled with Fibromyalgia all my life and when I started waking up in the mornings with severe back pain and stiffness in late 2012, I started my journey towards seeking health care insurance and a doctor that could help me manage what I thought was a different but very difficult part of the fibromyalgia. It took several months of more pain in my lower back and hips and lots of paperwork before I finally acquired coverage and found a doc. I first went to a primary care physician who shut me down the second I said “fibromyalgia” and wouldn’t talk to me. I remember being so upset and frustrated from waiting so long to finally see someone and to be turned away that I burst out into tears right in her exam room. She referred me to a rheumatologist in the same building and I waited a grueling 2 more weeks before meeting him. My doctor, Dr. Wilmer Sibbitt, was quite friendly and a great listener from the start. He asked me a lot of questions about my symptoms, pain levels, habits I have and about my family background. He was curious about my dad’s side of the family who are Tartar and from the region near Turkey and Mongolia. He told me that he wanted to do some blood work- well lots of blood work looking for a specific gene marker called HLA-B27 that I could be a carrier for that is linked to some possible answers for my pain. He also wanted to rule out lupus and diagnosed me with bursitis in my hips. He then ordered x-rays of my feet and my pelvis area.
He emailed me several weeks later letting me know that some of my levels were abnormally high and that I didn’t have lupus but came up positive for the HLA B27 gene. My xrays showed very minimal changes in my spine and in my left foot but it wasn’t enough for it to be noted by the radiologist yet. We also had an MRI done and saw some more inflamed areas and bits and pieces of what looks like the beginning of fusion. It took months to get all this done before he finally came out and diagnosed me with Spondylarthritis that looks to be more specifically Anklosing Spondilitis. Since my diagnosis, I’ve done several months of physical therapy that helped me stop walking with a cane, tried numerous medications like sulfasalazine, tramadol, meloxicam, NSAIDS and are now waiting on a second request for humira. It has not been easy trying to accept the fact that I have been diagnosed with a disease that can leave me disabled and disformed. It took me many years to accept the fibromyalgia diagnosis and the fact that it will cause me pain that nobody can see for my entire life. One thing that always got me through knowing this was that I knew it would never kill me and I knew people wouldn’t see it. Having AS changes things. The pain is so different than the fibro pain I am used to. Its so much more pronounced and stationary. Fibro pain spreads and radiates where AS doesn’t. I also struggle with how doing any of the same thing will cause pain. If I stand for too long, my ankles hurt but if I sit too long, my si joints and hips hurt or some of my muscles will hurt from the fibro or I will have numbness. It’s like living with a double whammy. I miss being able to cross my legs without pain and it drives me crazy that the AS has spread so quickly. I now have pain from the ball of my neck to my ankles and even in my shoulders. I’m trying really hard to learn about the disease, what it can do to me and what I can do to it to slow it down or reduce its impact on me. I’ve been so lucky to have found the Facebook group “The Faces of AS,” its helped tremendously to know I am not alone!!
New Mexio, United States of America