July 7, 2021
How many years have you been living with AxSpA? What has your experience been like getting diagnosed? How has life changed for you?
Rebecca Cappello Moderator
1 day ago
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.
Steve Tuffin Moderator
3 days ago
Anna Samson Moderator
July 28, 2021
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.
Anna Samson Moderator
July 30, 2021
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!
Lisa Marie Basile Moderator
August 3, 2021