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?
I had back pain starting in my 30s but always attributed it to my job as a nurse. One day in my 40s I woke up with both hands swollen and fingers so painful. While I feared RA, two rheumatologist tried to put me in a convenient box of fibromyalgia or “just” arthritis. I knew it wasn’t fibro but I was convinced it as more than arthritis. I had seen my dad since his 30s with severe arthritis and by the time he died was hunched over. Finally at 50 I went to a 3rd rheumatologist in his 70s. He asked me several questions that no other dr had and put me through several bending exercises. My lab work came back positive HLA-B27 and I was diagnosed. Bc I was in such pain and had gone almost 10 years before diagnosis I was put on biologics immediately. I agree with another person who said they only work so long. They mostly help the stiffness. At 64 I have pain everywhere but the flares are the worst. Keep your lights shining.
You've managed some rugged challenges with spondyloarthritis, and we appreciate your perspective on the effectiveness of biological medications used to treat this chronic illness. It's quite understandable that managing the pain and flares can be exceptionally difficult. Your strength and optimism in keeping your inner light shining through these challenges is truly commendable. Wishing you the best - Rebecca (team member)
I was 14 when I experienced my 1st fusion. Told for over 30 years the pain was psychosomatic. Even after a major injury at work to my lower back. It took 30+ years to receive the diagnosis, however insurance wouldn't cover AS treatment, so it is just RA in medical records. I've given up on Drs and the meds that made even more ill, internally on top of AS RA pain. I'm off all meds and just do what I can daily to live a good life.
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I so hope you are doing a bit better today and have found some relief.
Sending tons of positive thoughts your way,
Doreen (Team Member)
thanks! I'm still fighting with my insurance company over my biologic prior auth but my doctor was able to get some samples for a biosimilar and I start it tomorrow! This will be my first try on a biologic and I'm super excited! Hope you had a fabulous day.🩵
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.
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
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.
