Two weeks ago, I started to have nagging neck pain exacerbating my typical daily headache and causing intense vertigo, ear ringing, and some visual disturbances. We can’t pinpoint what caused this as there were no sudden changes in my lifestyle, PT, school, medications, etc. The pain was making it hard to be upright for long stretches and became pretty debilitating to my already limited lifestyle.
The good news is that my flexion/extension X-ray showed that there is nothing wrong with either of my fusions. It did show hypermobility in C3-C4 and C4-C5 between my fusions which we already knew because of past imaging. Thankfully, it doesn’t seem to be significantly worse. While an X-ray doesn’t paint the full picture when it comes to potential instability, I’m choosing to view this as a good thing.
The plan was to try a new type of neck brace since my Aspen Vista was hitting the base of my head in a spot that caused radiating nerve pain and to start steroids. I was fitted for a much better neck brace, but unfortunately, the steroids made me worse sending me into full body pain flare similar to the one I had in December (electric nerve pain shooting down back and legs, muscle spasms, hives, insane itchiness, nausea, vertigo, insomnia, hyperalgesia, etc.)
Friday, I was admitted to the hospital with the hope of breaking the pain cycle with ketamine and some other iv meds since that have worked in the past. The pain has been horrible…really hoping to bounce back soon. For many many months, I have been on the waitlist at Cleveland Clinic to meet with a nationally known gastroparesis specialist who thinks he can help me to be able to eat again. That appointment is supposed to be in a week and I would be pretty sad to miss it.
It’s unsettling how flares like this can present seemingly out of nowhere with EDS. It’s just another reminder that chronic illness is a rollercoaster and entirely unpredictable. One can do all the “right” things and still have setbacks like this.
