My name is Stephanie, and I live in Columbus, Ohio. It actually took me about 18 years from the first hint of back pain in 1996 to receiving a diagnoses in March 2013.
I guess my first hint of back pain was sciatica in 1996. I would have to walk so slowly and hold the wall for balance while I walk as sharp pains shot through my lower back, hips, and legs. I went to the doctor after having symptoms for a few weeks, and received an anti-inflammatory in addition to muscle relaxers. The anti-inflammatory helped a little bit, but the muscle relaxer did nothing except for make me sleepy. Within the next couple of years I developed pain in my neck and upper back. When I tried to get up in the morning, I felt like my back was tearing apart. Back I went to the doctor. More anti Anti-inflammatories. More muscle relaxers. Lather, rinse, repeat for the next few years. I gave up on going to the doctor for back pain for many more years after this, because nothing was helping. I started to accept that this pain was something that I would have to deal with. I was always tired, and I thought maybe the paid was wearing me out. I resigned myself to the feeling that I was growing very old before my time.
In late 2009, the pain in my back became so bad it was actually nauseating. I found a new primary care physician who diagnosed me with fibromyalgia and degenerative disc disease (I have that too). I had steriod shots in my back by a pain management doctor. This pain management doctor was a really nice guy, but he told me that I was probably “just more sensitive to pain” than the next person. Way to take this seriously!!!!
In 2010, I found a wonderful chiropractor. He could feel that my spine and the tendons along my back were, in his words, “like a steel bar.” He also said that I must have a very high tolerance for pain. He also said that my pain was “not my fault”. I was so relieved to meet a doctor who didn’t think I was just being a big wuss! I moved away from that chiropractor, and started seeing a different chiropractor. This one had quite a bit of experience working with ankylosing spondylitis patients, and also said that the muscles and tendons in my back and elsewhere had a very strange and hardened feel to them, just like AS.
Soon after this, my hands started “freezing” and I was having a very hard time unbending my fingers on both sides. I also developed eczema, a problem that I hadn’t had with any severity until 2012. I became worried that I had MS or some other autoimmune disease. I decided to go to a rheumatologist in the hopes of getting some answers. I got cortisone shots in my hands, an oral round of cortisone, a scheduled MRI and gave 6 tubes of blood for testing. The results of all this came back with a borderline positive ANA, and HLA-B27 antigen, SI joint fusion and spinal edema (watery inflammation). Strangely, I do have a watery and tender feeling around my spine those times when I am very ill. I can feel it when I touch my back and even when I walk there is a weird “sloshy” sensation.
I work full time in accounting, and am taking classes in order to obtain my bachelor’s degree in accounting. My job and school are both very stressful at times. However, I am looking forward to trying Enbrel beginning within the next month. I rely on God to get me through each and every day and having AS only helps me to push harder.
Ohio, United States of America