Originally diagnosed 32 years ago I think. I say “I think” because I was 13 or 14 at that time, and to be honest I don’t really remember much. I couldn’t walk due to terrible pain in back and hips. The doctor put me on crutches for 2 weeks and mentioned arthritis and possibility of rib cage fusing together, I think.
Pain has always been a part of my life since that time, the level of discomfort and how to manage/deal with it has caused various issues. From complete denial and the “toughen up” mentality, to self medication to extreme levels at times (extremely dangerous and not advisable). I have always tried to stay active, from playing sports in high school, to bowling and golf for the past 30 years.
I began to experience more than normal pain in the spring of 2010 during a bowling tournament. I figured because I am getting older I was experiencing normal age related aches and pains. The pain not only continued but began to increase in intensity into golf season, greatly affecting my ability to enjoy the sport. From golfing 2-3 times a week in years past, to a total of golfing 3 times all season last year.
With the new bowling season to start in Sept of 2011, I realized I physically could not bowl in a league since I was 6 years old. With serious encouragement from my wife (understatement!), I went to my primary doctor to discuss my situation. It had been 6 years since I went to him specifically for back pain issues. Due to length of time, he decided to start with new x-rays to see what was going on.
“Thoracic kyphosis is accentuated measured at approximately 70 degrees.”.
Hmmm, that doesn’t sound good, maybe page two of the report will be better…. “Osteophyte formation is present at L1-L2, L2-L3 and L4-L5, anterior wedging of the L1, ankylosis of the sacroiliac joints” as well as “findings are worse than the description report of the study of 2005″. Well needless to say off to a pain management clinic I go. 8 cortisone shots later, an appointment with a physical therapist and a rheumatologist and it appears that I am starting what appears to be the beginning of my new life. January 11, 2012 I am told I am HLA-B27 positive and officially diagnosed with ankylosing spondylitis. I am hopeful to begin Enbrol very soon (waiting on final insurance approval). The extreme exhaustion, lack of appetite, 25 lb weight loss in the past 6 months and inability to sleep more than 1 1/2 hours at a stretch is becoming rather tiresome.
I am currently trying to continue to work, however it is becoming very difficult especially with the “bad” days that are becoming more frequent lately. I am hoping to experience some relief once I start the new medication, although I know it is not a magic bullet. Between new medication, improved exercise and greater awareness of AS, I am looking forward to the possibly managing this disease and stop letting it control me.
Michigan, United States of America