I just have a little back pain!

     I was diagnosed with Ankylosing Spondylitis (AS) almost two years ago.  At the time I had been suffering from bouts of back pain every six months for ten years.  It wasn't that big a deal.  Every time my doctor would give me a Medrol dose-pack, steroids, vicodin and a week later I would be fine.  Then in 2007 I woke up with eye pain and sensitivity to light in my left eye.  After giving a local ophthalmologist a crack at treating it my husband rushed me to Yale one Sunday morning in a tremendous amount of pain.  It felt like someone had punched me in the face and my eye was ready to explode.  It was at Yale that I first heard of Ankylosing Spondylitis.  An intern on call that morning made the connection between back pain and iritis and tested me for HLA-B27, the genetic marker for Ankylosing Spondylitis (AS), Reactive Arthritis and Juvenile Rheumatoid Arthritis (JRA). I remember thinking he was crazy.  Until then I had been told, by one doctor, I had a swollen facet in my back caused by "hard living."  I left the hospital that morning with prednisone eye drops and the name of my first specialist. The test came back negative for HLA-B27 but I never forgot the conversation with that intern. 

      For the next two years I noticed that every six months I continued to have bouts of back pain, immediately followed by an episode of iritis. The episodes were happening more often and becoming harder to effectively treat.  Remembering my conversation with the intern in 2007, I decided to see if there was a link between the iritis and the back pain.  

     I met with my first rheumatologist in May of 2008.  He brought me and my MRI into his office, sat me down and told me I had Ankylosing Spondylitis.  He explained that I needed to stop hiking, biking, walking, running, skating, skiing, horseback riding or anything else that might possibly cause stress on my joints.  He gave me eight thick brochures on drugs that involved needles and IV's and told me to go home, read about my disease and decide how I wanted to proceed.  I remember calling my husband on the way home saying, "Maybe I do have AS but this man is crazy if he thinks I am going to stop living my life and start injecting cancer causing, immune crushing drugs into my system.  I just have a little back pain!" 

     That summer was strange.  I tried to continue hiking, as we always had, but the back pain was always there.  It went from a shooting pain down my leg and localized pain in two spots on my lower back to everywhere.  My wrists started hurting, my hands and my feet.  By August I could no longer walk on hard surfaces.  If we went to a grocery store or anywhere with concrete floors I had to use a wheelchair.  I could no longer sit or stand for more than an hour anywhere.  Visiting my mother who lived an hour away, became an impossibility.  The neck pain, from sitting too long, cause nausea and headaches.  By September I was ready to accept that I had AS.  I called a different rheumatologist and set up an appointment.  This time the pain and exhaustion was so bad I was ready to take anything to make it go away.  She started me on Enbrel and thus began two years of drug after drug, nothing truly helping to take the pain away.