How long did you experience symptoms before being diagnosed?
Many people experience symptoms of AxSpA for quite some time before being diagnosed. Some people are misdiagnosed, while others are dismissed as having simply back pain. What was your experience like?
Wow. I started experiencing back and neck pain in my late 30s. By my 40s I had spine pain and burning, SI pain, constant low grade fever, rib pain. I finally got diagnosed at age 46. I’d say it took about 6 years to get the right diagnosis and another 7 years to find a regimen that helps somewhat.
Rebecca C Moderator
Your story is eerily similar to mine . Dealing with spondyloarthritis has been a huge part of our adult life - frustrating, challenging, and really scary (to me). Having found this community has given me hope and strength to keep searching for answers, treatments, comradery, and knowledge while struggling with the disease process. Glad to have you here with us! Rebecca
Steff Di Pardo
I experienced symptoms for a year before being diagnosed. I know that that's a lot sooner than the average time, so I feel very lucky about that. I have a good team of doctors that believed me and trusted that what I said was true.
Lisa Marie Basile Moderator
In 2009 or 2010, at the age of 25 I began experience iritis bouts. One day, after putting on a new pair of contacts, I developed extreme light sensitivity and pain. I could barely talk it hurt so badly. The doctor said I had contact irritation. The problem? It kept occurring — over and over, for more than 2 years, until I finally demanded answers. I was young and healthy otherwise, so they really didn’t chalk it up to anything systemic. I went to see specialists at The Will’s Eye Center in PA, and they found I’d tested positive for HLA-B27, and asked me about my gut health, checked me for sarcoidosis, and other things. At that point, I had no other symptoms besides debilitating fatigue. I had a lapse in insurance, so for many years I didn’t continue checking in with doctors. I simply took eye drops when I got uveitis again. The uveitis stopped, but years later I began getting back pain, worsened fatigue, and all sorts of hip and neck issues. Finally, I got radiographic proof of AS in 2017, so after nearly a decade, I got the “proof” I needed. In 10 years, the disease went from just my eyes to everything — hip, pelvis, back and neck pain, plus fatigue, gut issues, costocondritis, and poor mobility.
I am currently 34 and have full mobility. I workout and walk on my own and am 100% capable of doing everything unassisted. However, I find it tiring to stand or walk for long periods of time, and at times I find it exhausting to simply do basic things. There are days I feel fine and days I feel my back is made of stone. It is all very unpredictable!
Cassia Pelton Moderator
I experienced symptoms of AxSpA for less than one year before I was diagnosed. I first felt pain in my left SI joint in April 2017 when I was 18 years old and I was diagnosed in February 2018, and started treatment shortly after. I was very lucky to receive a “quick” diagnosis but I had to advocate for myself, as many doctors dismissed me. I saw physiotherapists who believed my pain was caused by muscle imbalances, chiropractors who believed my pain was a result of poor posture, and sports doctors who believed my pain was a sports-related injury. But I knew that my pain wasn’t normal, because I was 18 years old and could barely walk. It was an urgent care doctor who eventually referred me to the rheumatologist who diagnosed me. I have learned that many doctors are unaware of AxSpA, or they follow outdated diagnostic criteria including being a man and the Schober test.