The Arduous Road to My Diagnosis, Part 1: The "Back" Story
Editorial Team: This four part series details Dyana's sixteen year journey to receive a diagnosis for non-radiographic axial spondyloarthritis. Click the following links for Part 2, Part 3, or Part 4 of her story.
My path to my non-radiographic axial spondyloarthritis (nr-AxSpA) diagnosis took many years and numerous specialist visits. On average, it takes seven years for patients to get a diagnosis.1 It took me sixteen years. Looking back, I believe that my symptoms may have started in my adolescence.
I was active as a child
During my childhood, I was fairly active playing softball and volleyball. Unfortunately, I remember going to the athletic trainer’s office a lot as well; I’ve always had some sort of orthopedic issue, whether it was shoulder bursitis, tendonitis in various body parts, chondromalacia patella, Osgood-Schlatter disease, as well as TMJ dysfunction. Back then, I always chalked it up to me not conditioning in the off-season or just being accident-prone. Why was my body always inflamed? Why was my body always hurting?
Then the back pain started
My back pain started when I was nineteen. It was during my brief stint as a server at a restaurant in the summer of 2003, I initially thought it was from holding the serving trays. My mid-back would have this sleepy spot that would tingle off and on all day long, which would turn into pain and stay that way. It was later that I would find out that it was due to a disc herniation.
My ribs also hurt
I would often complain of my ribs hurting so much that I could not inhale fully without hurting. If I went to the batting cage and hit four or five rounds off the pitching machine, I felt like I couldn’t breathe for days. After my nr-AxSpA diagnosis in 2019, I learned that there was a name for this: costochondritis.
I saw a rude doctor, then a good doctor
The first spinal doctor I saw was in 2004 and was of no help to me, often being rude and condescending. In 2005, the second spinal specialist referred me to his colleague in pain management, who is still one of my doctors to this day. I didn’t have scoliosis in the traditional sense, but I have kyphosis and lordosis. The scoliosis specialist in that office told me, “At least your skull is in line with your hips!” even though the rest of my spine resembled a question mark.
Finally a name for my pain: ankylosing spondylitis
I learned the medical terms for my chronic back pain: degenerative disc disease, facet syndrome, enthesitis, and sacroiliitis. I tried numerous steroid injections into my thoracic facet joints and sacroiliac joints, as well as a radiofrequency denervation – a “nerve burn” procedure – on a few of my thoracic facet joints. The nerve burn procedure only gave me eight months of relief before the pain came back.
In early 2014, my pain management doctor referred me to my first rheumatologist for a possible ankylosing spondylitis diagnosis after I had a bad flare of sacroiliitis. The rheumatologist ran a bunch of blood tests, but felt because I was HLA- B27 negative – and am female – he said I didn’t have AS. I’ve had providers over the years tell me that Ankylosing Spondylitis is “a man’s disease”. I was given some Lyrica samples to try and when I showed some signs of improvement, he was quick to put me in the fibromyalgia box. Unfortunately, he did not take my IBS symptoms or my history of keratitis into consideration either in order to get the full clinical picture.
I wish they saw my symptoms as a whole
For years, I thought that’s who I was: a chronic back pain patient from the age of nineteen who accepted the fact that I was going to live a life of pain on a daily regimen of narcotics. One observation I have made during my years of treatment is oftentimes, we are not seen as a whole. We see different specialists for different body systems. It would make sense that every symptom I’ve ever had must be connected because I am ONE body, after all.
Can you tell when a flare is coming?