“Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.”
-Michael J. Fox
I’ve been dealing with multiple flare-ups of new FOP bone growth for the past two months. It’s very painful, frustrating, and exhausting.
The most prominent flare-up, my left hip, is also the most familiar pain I’ve ever had; I’ve noticed it off and on for over five years. It’s gradually turning inward due to the extra bone and affects how I walk. This kind of flare-up is very uncomfortable and irritating when it’s active, but it’s much more manageable than the rest of my pain has been.
I’ve also had a lot of pain in my head/neck, tailbone, and upper spine, all due to flare-ups. This combination has proven to be extremely debilitating for me despite my high pain tolerance. The neck plus back pain causes migraines, which my scoliosis seems to then exacerbate. The tailbone pain makes it especially difficult and uncomfortable to sit or lay down because of swelling.
These flare-ups (neck, tailbone, back) were the most active and painful they’ve ever been (in my 17 or so years living with FOP) in mid-September. The combination of pain and the migraines also made me nauseous, which caused me to be sick for a few nights and unable to keep anything down (thankfully I was able to stay hydrated, though, and eventually was able to eat homemade chicken noodle soup and apples). The pain lasted roughly 4 days and forced me to be on bed rest for the majority of that time. I felt so distant from the rest of the world. I wasn’t able to look at a screen of any sort because of my migraines, so I couldn’t text my best friends or watch Netflix (two of my main coping mechanisms). I also couldn’t read or write (my writer’s brain was going CRAZY).
I’ve been experiencing pain “attacks” along with the flare-ups, which I imagine is just FOP doing its thing. The pain attacks only last about 30 seconds to a couple minutes, but they come on very quickly and are unpredictable. It’s almost like a wave of pain hits me, usually triggered by a sudden movement (repositioning, getting up too quickly or at all, etc.), but also randomly.
I’m frequently asked by friends and family what it feels like to experience a flare-up. In my experience with FOP, there isn’t really one general answer. Nevertheless, this is what I usually tell them (or, sometimes, how I want to explain my pain to them but instead I answer “I’m gradually feeling better!” to their “how are you?”):
- throbbing/pulsing: severe pain that comes and goes as if someone is continually squeezing your fingers together really tightly and letting go
- neck, tailbone
- sharp/stabbing: literally feels like someone is stabbing me
- mostly in non-joint areas (back and chest bone) but also my hip
- heaviness/pressure: feeling like an elephant is sitting on my chest (hard to breathe)
- occurs during a chest bone/rib cage flare-up
- sometimes a combination of two
- sharp + throbbing, heaviness + throbbing, sharp + heaviness
These consistent, high intensity flare-ups have really tested my spirit. FOP constantly reminds me how quickly life can change, sometimes overnight (like when I’ve woken up the next morning with new pain). It puts things in perspective and forces me to slow down and take a few steps back from my normal daily life. I appreciate the smallest of accomplishments and the days where I feel just the slightest bit better, even if the next day I’m not.
I’m learning to be patient with myself and with my body.
There’s nothing I can do to make it stop… no effective treatment (yet) or guaranteed pain relief. All I can do is pray, stay positive, remain hopeful, and not let this debilitating disease get the best of me.