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What's your AxSpA/AS Story?

How many years have you been living with AxSpA? What has your experience been like getting diagnosed? How has life changed for you?

  1. I have been trying to get a diagnosis since I was in my mid 30's when I felt something was not right with me. In my mid 40's I had a severe flare of pain after a move to a new city and I sought out a rheumatologist. This is when my spondyloarthritis journey to diagnosis began - 7 years ago. I went from undiff AxSpA to nr-AxSpA, to AxSpA, with the addition of peripheral SpA and now AS with radiographic/imaging evidence.

    My life has changed quite a bit. I have increased pain even though I am on biologics, DMARDs, and other meds. I do not work outside the home anymore and rarely plan to go out. My days are all different as I do not know how I will feel from day to day. I have okay days, but mostly bad days with relation to pain and fatigue. I have slowed down a lot and sleep much more. I have become more of a pj-wearing, animal-snuggling, movie-loving person, and I am okay with that.

    1. I've had AS since 1999 but that was when it was diagnosed - I think it's probably more like 1989, maybe even earlier.

      1. I have been living with AxSpA since 2015. However, I was not diagnosed until 2019. During those four years, I began experiencing worsening pain, discomfort, and fatigue. The onset of my AS was very gradual; so much so, that I did not actually go to the doctor about my pain until late 2017. Up until then, I had just thought that these were growing pains (as I was a teenager then). Even after my diagnosis, I did not realize how bad my AS was until early 2020 when I could no longer mask my illness and had to admit that it has a debilitating effect on my life.

        Getting diagnosed was difficult but I am thankful for how quickly my AS was discovered. As I mentioned earlier, I did not go to a doctor about my pain until 2017. I went to my family doctor (general physician) first and was brushed off at first. But after a couple of months of seeing her again and again for the pain in my lower back and buttocks and fatigue, she finally ordered some x-rays for me. My x-rays revealed that I had some spondylolisthesis, so some movement in my vertebrates. After this I was referred to an orthopedic surgeon who said there was nothing really wrong with my back. After that, I was referred to my current rheumatologist in early 2019. After ordering some x-rays, MRIs, and blood work, he diagnosed me with AS in late 2019. I am so lucky to have been diagnosed by a rheumatologist so quickly as I know many people with the same condition have experienced much longer wait times.

        Life has changed drastically for me. I have not been able to get a job. I had to change my undergraduate program from a four-year degree to a three-year degree (which is less useful for my field). I have lost friends and become distanced from extended family. I spend most of my time at home, either in bed or on the couch. Showering has become a tedious and tiring task. I cannot walk most days without a cane. I am almost never sitting anywhere without a heating pad. My life has become all about my AS (and other conditions) and it is so frustrating, but I am grateful to have found such a wonderful kinship in the chronic illness/disabled communities.

        1. Hi Lisa,
          Thank you for your kind and supportive words.
          I'm sorry to hear your diagnosis process was so long. That must have been so frustrating! I hope you've found some comfort and relief for your AS since then.
          Hope you're doing well!

        2. Thank you Anna, and I hope the same for. Luckily, we've got this community and we're in it together!

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