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How long did it take for you to be diagnosed?

Let me know below how long it took between your symptoms starting and getting your diagnosis?

I feel very lucky that I was diagnosed within a year of my symptoms starting.

  1. I started experiencing chronic low back and shoulder enthesitis when I was 13 years old (I'm almost 28 now). I started actively seeking a diagnosis in 2014 and was only finally diagnosed April 2023. So 9 years of trying, but 14 years of pain. Have not started any medications yet, but at least I know what is going on with me! I truly believed after a while that it was all in my head or that I just couldn't handle pain like everyone else. I didn't even know anything about spondyloarthritis until recently. Although, funnily enough, when I was 18 I heard a commercial about ankylosing spondylitis and thought, wow that sounds just like me! Who would have thought nearly 10 years later that I would revisit that name and realize that my quick and fleeting intuition at 18 was correct! I would never have put it together if it weren't for a midwife I saw years ago when I was pregnant that connected my arthritis in the spine and my psoriasis. Bless that woman!

    1. Hi I am new here. I am in the same boat as you. I’ve been dealing with this pain since my early teens and now 43 with no diagnosis. I was always told as a kid I walk like a duck with both feet pointed outwards. I have gone to the doctor numerous times and all they say is you pulled muscles or your muscles are tight. They give me muscle relaxers (which do nothing) and send me on my way. I’ve switched pcps and had to start all over explaining everything from the beginning and then I am told oh physical therapy will straighten you out. Let’s say I’ve been a dozen times or so and still here with all this pain. I finally had a mri done of the lower back it showed to disc l4 and l5 with small protrusions. So they want to set me up with back injections but the pain is not just in my back it’s in my knees my hands my ankles shoulders and neck. I am struggling and I feel like I am just getting a run around I have no clue where to start then asking for a blood test for as which I did and I’ve been on a waiting list since December they said it could take up to a year to get in. Sorry for my rant. I hope you get things sorted asap.

  2. Pain started early 20s, not diagnosed until 40s. It was rough I can relate completely.

    1. I am sorry you had to go through so many years undiagnosed with pain. I wish for so many of us going through this, getting diagnosed the process would be much easier to be able to get some treatment sooner. How have you been feeling now? Are you on treatment ?


      Nicky (Team Member)

  3. I started with severe back pain at 19. Dr's thought I was 1, faking and 2, crazy because I had no herniated disc (duh) I persisted with Dr's until I found of rheumatologist who checked good the hla b27 marker (which before internet really meant nothing to me) when I hit my mid to late 40'S I first heard spondylarthropathy from another rheumatologist. God Bless her!


    1. Hello Ali
      I think I went undiagnosed for 15 years. It's hard to tell exactly, isn't it? But looking back, the symptoms that have plagued me for more than half of my 63 years, would suggest I probably had it from my mid-twenties.
      Originally, a doctor thought I'd got whiplash. When I explained I hadn't been in a car accident, he said, you must have been. I can still remember laughing at that. How he thought I'd forget a car accident, I'll never know. He was nice enough though - just a bit put out because he couldn't pin down what was wrong with me.
      Go well.
      Steve - Community Advocate.

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