Hi my name is Kim Opgenorth and my son is Nathaniel. Our story is not much different from any the others. I was a runner through out middle school,high school & college. When I was 13 years old I complained often of back and hip pain, but I continued to run.When I was a senior in high school I injured my hamstring. I was told it was due to not warming up properly before an event.I followed a rehab routine to nurse it back to normal,it never felt the same. I eased back into running and continued to be plagued by the back,hamstring and shinsplints. My doctors continued to diagnose the pain as ‘growing pains’ then eventually scoliosis. I had little to no symptoms while pregnant and nursing but the symptoms would surface shortly after I stopped breast feeding. During those times I would resort to Bextra my favorite NSAID and I was all good. Sadly,Bextra was taken off the market and all other NSAIDs since caused me GI bleeds.
Fast forward to the year 2006 I was due to deliver my third child.She was posterior much of my pregnancy doing what felt like the splits. The pain in my hips and sacrum was mind numbing. As I labored I kept telling my nurses and doctors that this was not back labor or the normal labor pain. I had given birth twice before without pain medicine and was needing something strong…they offered me Benadryl….after threats of sending letters to hospital administrators I was offered Stadol to deliver her. She arrived after 2 pushes.The Stadol wore off and the pain returned,but this time manageable. After 2 years of the manageable back and hip pain,I was reader ended in a MVA.The pain returned with a vengeance along with constant eye irritation,fatigue and plantar faciatis. My complaints did not go unnoticed by my incredible internist. She referred me to a Rheumy who ignored the symptoms and the positive HLA-b27. He diagnosed it as all in my head and a possible case of fibro. After giving him 2 more chances I went to Brigham&Women’s hospital where the Rheumy there said I had sleep apnea possibly,I was overweight and maybe it was fibromyalgia,but again I had a positive HLA-b27. Both of them stated that it was not likely that I had AS because I was African American and a women. My internist persisted and I found a Rheumy who had a pay grade higher than that of the first 2. He treats out of the Hospital for Special Surgery in Manhattan and diagnosed me after my 8th set of X-rays and 5th MRI. I now take Humira.
My son had similar complaints coupled with a previous diagnoses of crohns disease. He had been a varsity rower on his high school crew team and started to complain of back,neck and hip pains. At first he was told it was growing pains until a xray revealed otherwise.Our internist and physiatrist referred him immediately to a Rheumy January of 2012 and he has started Humira after the first line of meds failed to relieve his symptoms.
We both continue to have break thru pain,stiffness and fatigue if we over do it. We fight the many comments of how well we look by friends and family or strangers as we park in a disabled space. We have good days and plenty of bad ones but consider ourselves lucky compared to another family member who was recently described as having a ‘bamboo’ spine.
That’s our story,
Kim & Nathaniel Opgenorth
New York United States of America