My name is Chris and I’ll be 45 this year. I live in sunny Southern California. I love to hike, fish, camp, bike and work in my yard. In January of 2006 I was diagnosed with Ankylosing Spondylitis. It took 15 years to get my diagnosis and it was after 5 months of being in so much pain that I wanted to die that I got my answer as to what was happening. I ended up at UCLA with an AS specialist to get my diagnosis and my current Rheumatologist, which has just joined my medical group at the time, just happened to do his internship and residency under this UCLA specialist. I feel unbelievably blessed to have this AS expert as my doctor.
My symptoms started in the Fall of 1990 about a month after getting married. I was 23 and had the worst pain that ran down my leg and would go down into my arch and even cause my foot to cramp from the pain itself. At the time I was still in college full time and worked part time for a chiropractor who said it was sciatic pain and I proceeded with chiropractic adjustments – which didn’t really help. When the pain started switching sides (sometimes several times within a few hours) we realized this was not a pinched sciatic nerve we had believed and I made an appointment with my doctor. This would be the start of me seeing many, many, many doctors (I stopped counting after 15) and all appointments would eventually end the same way – samples and prescriptions for Prozac and an appointment with a psychiatrist. I remember one appointment where I had listed my symptoms and the doctor commented that the only thing missing was that I hadn’t said my teeth hurt. At that point I looked at him and said “you know what, they kind of do now that you mention it”. Many conversations with these many doctors ended up with them asking me if I was happily married, did I wish I didn’t get married, did I wish I didn’t have children….basically they were telling me it was in my head.
Amazingly enough once I passed the first trimester of my pregnancies (which were horribly painful with the same leg pain) I was the most pain free till about a month after giving birth. I then started linking together the fact that I could never take birth control pills as the pain would increase during the month then i’d start to feel better during the placebo pill week. I then linked that with the pregnancy issue of pain in the first trimester but as soon as the hormones leveled out I felt the best ever and wasn’t in pain until after giving birth. So now I figured this had to be hormone related and now sought help from my OB/GYN. And again the cycle started and again I lost count after 15 different OB/GYN’s who all, after a point in time, threw up their hands and said they had no clue.
Then we moved and I needed a new OB/GYN. My sister loved hers so I went to see him. I mentioned, in quick passing at the end of my appointment, about my pain and how it seemed linked to hormones but I actually told him not to bother, that i’d pretty much given up finding a reason for it. He said he liked puzzles and before I left I had an appointment for laparoscopic procedure (I had other issues he wanted to look at as well). Having removed a small amount of endometriosis he said he’d see what happened and if anything changed and set an appointment for 6 weeks. At 6 weeks nothing had changed and we decided on a hysterectomy as he noticed during the procedure that my uterus was tilted so far back that it was possible during normal swelling every month it was pinching off nerves. I had the procedure and for 2 years after I had the most pain free time since I was 23. I still had pain but it no longer went down to my arch but stayed up by my hip. After the excruciating pain for so many years this was nothing and it didn’t even slow me down. To this day I do believe that aggravated my AS and never have regretted having the hysterectomy.
Fall of 2005. September 22 to be exact. My wedding anniversary. I woke up with a swollen knee (no pain) and slight fever. I went to my GP who couldn’t figure out why but he gave me steroids and something else and said if it wasn’t better by Monday to call and come in immediately. Friday morning I woke up feeling great so we headed off to our anniversary weekend. By Saturday night I was in so much pain I was shaking, had a fever, knee back to being swollen but now painful. I felt so horrible I thought I was going to go to sleep, never to wake up. By Sunday morning I couldn’t move, my whole left side from my jaw to my ankle was useless and in pain. The middle of my back between my shoulder blades hurt – like it was bruised. I felt like i’d gone 5 rounds with Muhammed Ali beating on it and I kept looking to see if there was a bruise. We would drive from our weekend getaway straight to the ER at our hospital. This would be the flare up that would eventually lead to my diagnosis. We believe this flare up was brought on by food poisoning I had a few weeks earlier while on a fishing trip in Mammoth. I was wheelchair and crutches bound for about 6 months but it would take me a year to fully recover. I was seeing 4 different doctors who tested for everything – Lyme disease to barely heard of diseases. One of these tests came back HLA-B27 positive. I was sent to a Rheumatologist who, even with this result, misdiagnosed me. Everyday while taking way too many pills, not getting much better on them and enduring 3 knee taps I constantly told my husband that I felt I was not being treated correctly. At one appointment I finally asked to be taken off these drugs and was told that I would never be off of them. By this time I was losing my hair in clumps, losing my temper at every little thing and had dropped to 108 pounds yet I was taking the same amount of meds his 200 pound patients were taking. I told him to tell me how or I’d google it and do it myself. He told me how and then said to find another doctor. I got off the meds while at the same time googled my symptoms and one doctor’s name kept coming up at UCLA. “What the heck” I thought at this point I’ve seen so many doctors, one more didn’t phase me. I made an appointment and took all my test results, my MRI’s, my CT scans with me. He looked at everything, looked at my symptom list and looked me in the eye and finally put a name to my years of suffering. This was in January of 2006. Turns out this doctor is an AS specialist and has spent his career trying to find the link between HLA-B27 and AS and why some get it and some don’t. I’m doubly blessed my current Rheumatologist spent his internship and residency under him.
It is now 2012. Being on bio-identical HRT to keep my hormones in balance, staying away from potlucks (unknown bacteria can cause a major flare), and with guidance from my Rheumatologist I’ve been able to keep, for the most part, the pain and inflammation in check using over the counter meds only. Through many appointments we have come to realize that activity is my saving grace (thank goodness I’m a Type A person!). When I quit going to the gym or drop my activity level I take many steps backward (as I did this October when I got sick and couldn’t do much). Yoga and Zumba have helped me tremendously by building strength in my muscles surrounding my spine and hip joints while at the same time allowing me to tailor what I can do depending on the pain level. I was told with my diagnosis that I’d never be able to run. Okay, so at that time I didn’t run, didn’t care to run. That was, of course, until I was told I couldn’t then my stubbornness came out and it was all I wanted to do : ). I am now training for my first half-marathon and have completed some 5K’s in the last year with one being a Survivor type obstacle course in the sand. I’ve gotten past my recent flare up and have been pain free for the past 4 weeks. I love hiking and one of these days I want to hike Mt. Whitney. I still fight the fatigue from the auto immune part of AS from time to time but feel I live a pretty normal life most of the time. We’ve raised 2 wonderful children who are now almost 18 and 15. I’ve been blessed by my husband of 21 years and his support during the most painful times as well as those of our close friends who pray me through each and every day and who don’t forget that I have this disease even though I look completely normal on the outside.
I am truly blessed.
California United States of America