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?

Ankylosing Spondylitis: Now What?

There’s nothing in this world as surreal as watching a man twice your age hobble past you at a speed you could’ve only achieved years ago. But with a diagnosis of Ankylosing Spondylitis, a nasty form of arthritis, it’s commonplace.

In fact, I’ve been doing it for years. And, with every gnarled old man that huffs past me on a sidewalk or in a hallway, I grit my teeth and carry on. That’s really all you can do in my position.

Besides constantly fighting against my spine and ribs trying to fuse, that is.

Ankylosing Spondylitis is a type of rheumatoid arthritis. Common symptoms include the inflammation and fusing of the spine, sacroiliac joint and pelvis. It’s an ‘autoimmune disease’ in which your immune system turns inward and begins to attack you. This causes the classic inflammation and the bone fusion symptoms of Ankylosing Spondylitis. This also happens to be why I now live my life in the slow lane.

As a man in my early 30s, I find my slowing mobility beyond frustrating. It’s horrendous. It’s put an end to most of my dreams of hiking on the weekends or retiring to a back country farm somewhere. And, while my body seems to be failing, I continue to try to battle my way through it.

My best weapon? Knowledge.

If you’re reading this, I assume it’s because you have been (or someone close to you was) diagnosed with AS. If that’s the case, it’s important that you know that you’re not alone in your suffering. Some sufferers were lucky enough to have a doctor diagnose them early on, before the pain became unbearable. Others may have struggled for years in physical torment before the diagnosis became clear to their doctor. Regardless, now that the pain has a name, there’s no better way to fight it than with an education.

Lesson number one? Expect doctors to focus on your symptoms instead of a cure. This disease is treatable, not curable. Up until your diagnosis, all the doctors you were seeing were hoping for an answer. Now that you’re diagnosed, doctors will be focusing on treating your symptoms only.

Most medicines that your doctors will prescribe for AS impede your over-active immune system. These medicines are ‘immuno-suppresants.’ Likewise, you’ll be hearing the term ‘NSAID,’ which stands for ‘non-steroidal anti-inflamatory drug.’ Both immuno-suppressant drugs and NSAIDs have their strengths and weaknesses. It’s important that you keep up your research and listen to your doctor when it comes to these. The nuances are many.

Lesson two – you need to remain as active as possible to maintain flexibility. ‘Move it or fuse it’ seems to be the rallying cry of the AS sufferer. Exercise and activity are the best ways to fight back the gradual fusing of your bones. Ankylosing Spondylitis is a slow disease, but it is relentless.

Lastly (for now), expect your friends and family to take on different reactions to your pain. Sometimes they’ll assume that you’re in more pain than you’re letting on. Other times, they’ll assume that you’re just being dramatic. Get used to asking for support and talking about how you’re doing. This is the only way that anyone will be able to relate with your experience with Ankylosing Spondylitis.

Before your diagnosis, all the pain you were suffering was happening without reason. Weeks and months of your life may have disappeared in a mysterious and horrible series of painful experiences. Now your pain has a name, a medical definition and a tried series of treatments to help control it.

Oh, and you’re going to be hearing a lot of the phrase ‘you’re too young for arthritis!’ I haven’t yet figured out a clever enough response to this, so if you have any ideas, let me know in the comments below.