What spondylitis is like

Spondylitis refers to arthritis of the spine. Instead of being caused by wear and tear on joints, this kind of arthritis is caused by the immune system attacking joints. This is my honest experience with spondylitis. It’s just the facts, not meant to be pessimistic.

From the beginning

My first symptoms started when I was in middle school: tendonitis in my ankles and then hip, knee, and back pain. In high school my shoulder became a problem, and eventually, smaller joints like my wrists and fingers.

After many years, I finally found a doctor who would treat me while figuring out what was wrong. I had figured it out years ago, but the doctor got to it eventually. (Only seeing a doctor for around 15 minutes every 4 months can make getting a diagnosis challenging.)

Treatment

Spondylitis is first treated by anti-inflammatory drugs (NSAIDs), like naproxen (Aleve) or even ibuprofen (Advil). If these aren’t enough, drugs that modify the immune system are tried. Since none of these drugs worked well enough for me, the next step was to try an injectable medicine that suppresses part of the immune system, called a biologic. You may have heard of Humira or Enbrel in TV commercials for arthritis. I take Humira now, and it really helps my symptoms.

I also exercise as regularly as I can, usually roller skating or various other exercises. It’s also really important that I get enough sleep, because otherwise even my most well-behaved joints can start hurting.

Today

What spondylitis feels like depends on the day. Autoimmune diseases tend to have flares and remissions, alternating periods when symptoms are bad and when symptoms mostly go away.

For example, I’m in a flare right now, and so I wake up most days stiff with my back in pain. After being up for awhile, that gets better, but if I sit for too long I start getting stiff again. If I walk for awhile, I get knee pain where my tendons are irritated and my shoulder will start to hurt from the effort of supporting my arm. Standing or walking also puts a lot of pressure on my back, which can cause it to ache really badly. It makes chores a little difficult, like standing for dishes or to do laundry. Sitting, on the other hand, hurts my tailbone really badly, so it’s kind of a catch-22. Spending a lot of time gaming or typing means my hands are sure to start aching, especially after I’ve stopped. And so on, with various other things, although those are the most noticeable for me.

Luckily, I can control it with some of the treatment methods I talked about. I definitely end up really frustrated sometimes, but most of the time I just adapt without thinking about it.

Thanks for taking some time to learn about me and spondylitis! This is my personal experience, and I know a lot of people will have different experiences.

-Bri

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