I Developed Peripheral Spondyloarthritis; Here's What That Means
There are two main categories of spondyloarthritis: axial spondyloarthritis and peripheral spondyloarthritis. Chances are, if you are reading this, you or someone you know falls under the axial spondyloarthritis category. But is it possible to fall under both of these categories? The answer is yes, and I know because I do.
A painful toe joint
Three years before the onset of my AS symptoms, I started experiencing what I could only describe as a stiff, throbbing pain in the large joint at the base of my big toe. At the time, I was a very outgoing, social person. I loved getting all dressed up and going out with friends like any other 20 something year old. I figured the stress from wearing heels all the time was what was causing the pain, so I honestly didn’t think much of it.
For the next three years, the pain in my toe would come and go. I noticed it would worsen when I would wear specific types of shoes or when I was active. It always went away though, so I figured it was nothing to worry about. That all changed when I was diagnosed with AS.
My AS diagnosis makes me think twice
After my diagnosis and doing countless hours of research into my new disease, I realized maybe there was something more going on with my toe. I started comparing all the joints of my fingers and toes and realized there were “nodules” on that specific toe joint. I also noticed a bright purple line that ran from that toe up into my ankle. None of this looked right to me, but I figured it was probably arthritis, and I just needed to live with it.
Time to see my orthopedic surgeon
Fast forward one year into my AS diagnosis. I was doing a deep clean of my house when I tripped and jammed my toe into the floor. The pain in that joint was excruciating, and I could no longer put any pressure on it. I decided it was probably time to see an orthopedic surgeon about it.
At my appointment, I told my surgeon about my AS diagnosis and told him I figured there was probably arthritis in that joint. He sent me down the hall for x-rays and told me he would be back shortly. As I waited for the results, I kept thinking that this was all a waste of time, because realistically, what could they do for arthritis in my toe joint?
The X-ray results come in
When the doctor came back in and pulled the x-ray up on the screen, my jaw dropped. As my eyes met his, I could tell what was coming next was not going to be pleasant.
I can only describe what I saw on the screen as two large rhino-looking horns growing out of the joint. These “nodules” that I thought I had were actually osteophytes (spiky, boney growths off the bone). He explained to me that they typically don’t see this with AS in a toe (this occurs in the spine with AS). He suggested I probably also have peripheral spondyloarthritis, and the osteophytes were causing enthesitis in the tendon (which also occurs in the spine with AS). The purple line I saw over the toe turned out to be the tendon in an extreme state of inflammation.
After discussing treatment options, my surgeon decided he wanted to start me off in a walking boot for 1-2 months and see if we could get the tendonitis under control. Inevitably I will have to have some type of surgery to remove the osteophytes. While I am thankful to have received the diagnosis, it is scary to think that this may happen in more joints as time goes on. If you have any experience with both AxSpA and PSpa, I would love to hear your stories and experiences.
Do you use the word disability to describe your AS?