My Diagnosis Story

Like any good story from my 20s, my battle with ankylosing spondylitis started while drinking with friends.

We’d all congregated together for a street fair here, in southern California. I was 23 and intoxicated, surrounded by hundreds of other nigh-invincible street fair attendees. We stuffed ourselves full of food truck foods and street bar booze before deciding to stumble home.

It wasn’t until halfway through our walk that my right leg got to feeling a little uncomfortable. By the time I bothered to look down, my knee looked like it had swollen to nearly three times the size it should be. As though I’d stuffed a balloon up the leg of my pants.
And not in a sexy way.

Peripheral manifestation

At the time, I was living away from my parents in the days before Obamacare and had no health insurance. I spent weeks hobbling around on my bad knee, trying to justify waiting it out.

If I’d known back then that the swollen knee was just a peripheral manifestation of my ankylosing spondylitis, I imagine I’d have taken it a little more seriously. Peripheral manifestations can take place in any number of joints and usually act as early indicators of the disease, though the correlation is usually unnoticed until a diagnosis is reached.

In time, it became clear that I’d need to change my approach. I found myself a dirty little 24 hour clinic that would accept my cash and took up a spot in their waiting room. The doctor took one look at me, announced a diagnosis of bursitis, told me to take some ibuprofen, and then he left. What he didn’t know was that I had been popping ibuprofen like candy ever since the ordeal had started.

Later I landed a job that came with insurance and, with it, a whole series of doctors with different guesses about the swelling. To make matters worse, my other knee started inflating around this time, too. X-Rays and MRIs all came back clear, leaving no diagnosis for my massive knees.

Then the back pain started.

Spinal inflammation

Waking up for work one morning, I got my first taste of intense arthritic pain while attempting to push myself up from my mattress. Not much of a morning person before this, my new found struggle didn’t help my disposition toward the early hours of the day. My boss, though, couldn’t disagree more. She made it clear that my first day calling in late to work for chronic pain shouldn’t become a habit.

One of the most common symptoms of AS is morning pain, I later found out. While sleeping, joints get stiff as the immune system attacks itself. The sacroiliac joint, that spot just above the tailbone, starts trying to fuse over time and the pain is pretty unbearable.

My diagnosis

When I described my pain to my rheumatologist, a light bulb in his head lit up. Could my years of trouble walking and slow, pained mornings were the result of ankylosing spondylitis?

I finally had my diagnosis.

One reason I started this site is because I never originally read up on the disease, let alone attempted to pronounce it correctly. I just went on feeling more and more powerless with each compounding symptom. Now I can share what little knowledge I’ve gained while researching deeper into the topic. I’m also hoping to learn a bit more along the way.

If you or someone you know has a diagnosed case of AS, at what age did the symptoms begin showing? How long did you end up suffering without diagnosis?

  1. Thanks for talking about AS. The inflammatory diseases are not treated, or managed, well by the medical community, neither is the average medical professional reading up on much about these types of diseases, not even the “specialists.” It is thanks to people who are using the web to tell their stories that I have learned more about AS, and how to manage the symptoms, info that no doctor has ever provided me with 🙂

    I’m still no officially diagnosed (no signs of ankylosis on imaging), I have had varying degrees of symptoms all my life, but the full onset happened gradually when in my 30s, with a culmination at age 36. After that I changed my diet, and several years of a no-starch diet has me doing really well, improving steadily year by year.

    • Good on you for writing out your thoughts about AS! I am 25 years old and have AS too. I was diagnosed in March this year, Im so lucky that I came across the kickas website and a few other videos on youtube about the no starch diet. Those NSAIDS are horrible to take!! It is incredible how a diet can reverse basicly all of my pain and stiffness!!

    • I’m still working on diet as a potential option for me, but it’s a race against time now that I’ve got fusing taking place in my neck.

      Enjoy your mobility while you’ve got it!

  2. Thanks for sharing your story! I can so totally relate!

    I went 12 years until I was properly diagnosed – and at that point I had a lot of irreversible damage. Seeing the words “bamboo spine” on my x-rays will forever haunt my mind.

    Finding a community of fellow AS Warriors on line has really touched home for me. And I a total believer in the starch free way of life, it has helped me so much.

    xo

  3. I’m a 60 yr old female,and for the most part very healthy…but 18 moths ago my hands began to hurt terribly and all my fingers,they all swelled up,later my knee and shoulder..anyway..went to the Rhumey and was dx with AS per the blood test which is positive and X-rays she took..which showed changes.my hands have cleared up,but my lower spine seems to be getting worse and my height has decreased.its hard to stand up straight..I’m going to get a new set of X-rays today..I need to see what’s going on.Happy to have found this support👍😄

  4. Thank you for writing your story. I have learn a lot from your story.
    I’m 56 yr male who was diagnose with AS about 4 months ago. I did not suffer with severe pain until after I injured myself while racing motocross. To make a long story short, I fractured my left part of my sacrum which set off AS. I though the chronic pain was from my fractured sacrum so the denial of having AS was there. When I finally accepted it was AS is when I wasn’t healing and the pain got worse not better and started to extend into my lower back and neck. I went saw a Rhumey, with blood tests, X-rays and MRIs. Sure enough I have AS. My Rhumey prescribed Naproxen and Presidone. My wife did all the research on AS and found the No Starch Diet, as it can help with AS. It took a few weeks to take full affect but when it did I was pretty much pain free. It only has been 2 months but it’s amazing how much better I feel. I feel pretty lucky that this NSD works for me. I’m totally off of the medications as well. I just had blood tests done and the results are amazingly better. All most at normal levels. I sometimes have a little stiffness in the morning but a little stretching takes care of it. I’m very active so I’m sure this helps. I will take your advice and do the things you recommend. I’m sure it will help in the future.