From One Illness to Another: My Diagnosis Story Part 1
It was April 2019. For the past 5 months, I had been suffering from osteomyelitis of the mandible (infection of the jaw bone) caused by what was supposed to be a “simple” wisdom tooth removal surgery. I’ll spare you the details, but basically, things had become so bad that I was sent to an infectious disease doctor to have a PICC line put in and was to be treated with IV antibiotics for 12 weeks. Never in a million years did I dream that this infection would lead me to a diagnosis that would change my life forever.
Five days after my line was put in, I woke up and noticed my neck was extremely sore and stiff. This wasn’t a typical “kink” in the neck kind of pain. I hopped out of my bed and rushed to the bathroom where I saw my neck was actually swollen. Assuming there was an issue with my line, I called my doctor and she had me come in for x-rays to determine what was causing the pain. After a series of different imaging all came back inconclusive, I was sent home with NSAIDS and muscle relaxers and lived with the pain for a few weeks before it finally subsided. Strange.
As the weeks went on, I started noticing waves of extreme fatigue set in. Being up and present with my family became more challenging by the day. I brought these concerns to my doctor. She chalked it up to being a result of the amount of pain my jaw was in. In my head, I wasn’t buying it. It was a level of exhaustion I had never known, and it was progressively getting worse. Wasn’t I supposed to be getting better? Anywho, I’m no medical professional, so I agreed that she was probably right and left the office more confused than ever.
Still sick, no answers
July 5th was a day I will never forget. My jaw was still in a lot of pain, there was still swelling, and the fatigue was at an all-time high. On top of this, I was pretty sure my back was about to go out like it occasionally had for many years. I’ve had back issues since I was 10 years old, so this was nothing new. So here I was 12 weeks into my intravenous antibiotics, but I still felt like garbage.
I went into my doctor's office assuming my recent MRIs were going to show a lingering infection, but to my surprise, it was all cleared up. I didn’t believe them, there was no way. Something was clearly not right. Before the doctor removed my line, I asked her to double-check the MRI report. At this point, I was in tears. I was so confused. I was not well and nothing seemed to make sense. She read over the report once more and reassured me the infection was gone, but she did note there was excessive inflammation left behind. Weird.
As soon as I got outside, I called my family crying. I remember sobbing in frustration, “This isn’t over. I’m telling you, something is still wrong. I’m not healed, I’m not okay.” What I didn't know was that what I was experiencing was actually the start of something a bit more significant.
Back pain becomes consistent
The day after having my line removed, we headed to the pool for a fun day of swimming. I remember this day specifically because this is the earliest date I can really recall noticing the severity of my back pain. From that day forward, I didn’t go a day without pain.
By mid-August, my back pain was becoming more and more of an issue. I had been ignoring it for the past month and a half because I was still consumed with my jaw and the fatigue, but it was becoming harder and harder to ignore. We had gone to a wedding out of state and the entire car ride I was in complete agony. Why did my back hurt so bad? Why had it been hurting for months now? The only thing I was sure of was that I didn’t have time for this, so I chose to ignore it.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?