October is CRMO Awareness Month.
Chronic Recurring (or Recurrent) Multifocal Osteomyelitis falls under the auto inflammatory umbrella. It is diagnosed by a series of eliminations. This means x rays, CT scans, MRIs, blood work, biopsies, and tests. It comprises periodic bone pain, fever, and the appearance of multiple bone lesions that can occur in any skeletal site. In my case, I’m primarily affected in my Sacroiliac Joint.
When I was 16, I woke up one day with a pain in my butt and a shooting pain down my right leg. After a couple days, we went to the ER and pulled my Grandfather’s wheelchair out of the basement. I was unable to walk without pain for months. I was in my Grandfather’s wheelchair for most of that time while the doctors tried everything to make the pain go away & find the source of infection. It turns out when your SI joint is inflamed enough, it will pinch your sciatic nerve.
I went to the ER about 4 times that summer, finally culminating in a 5 day hospital stay. They eliminated injury, arthritis, cancer, and the list goes on. It was scary. No one knew what I had, other than severe pain, so they kept giving me painkillers. Vicodin, Percoset, eventually Dilaudid. More tests & blood work. More doctors. Trips into Boston to see a specialist to try and figure out WHY and WHAT was going on.
I have a very vivid memory of laying on the couch and screaming in pain because it was so bad. The pain killers I was given didn’t do much except numb me to everything. I was bored. I was 16, energetic and unable to walk to the bathroom without holding onto a wall. Thank goodness for baseball season, because the Boston Red Sox were one of the main things that helped keep me sane that summer. I remember sitting in a chair one night and thinking I should kill myself. Was I actually suicidal? Nope! I came to the conclusion that I couldn’t do that because it would be messy & I didn’t want my mom to have to clean that up. This is one of the reasons they don’t typically give teens the meds I was on.
After my hospital stay at the 6 week mark, they were able to get the inflammation low enough that it stopped pinching my nerve. I was finally able to sit and not have tears running down my face. The nurses were absolutely amazing.
Another 2 1/2 months later, I was formally, and FINALLY diagnosed at Boston Children’s Hospital. Chronic Recurrent Multifocal Osteomyelitis of the Sacroiliac Joint. Fun stuff.
To this day, I’ll still get flare ups. I’m actually lucky because mine are fewer than most.
Fun fact, there are hundreds, if not thousands, of people who walk around with this and have NO idea. Partly because it’s ridiculously rare and most doctors have never heard of it. Also because one of the symptoms is more painful than common “growing pains”. How do you judge if your kids’ knees actually hurt as bad as they say or if they’re being dramatic? In my mom’s case, I was a dramatic child, so it’s completely understandable that she didn’t realize I was actually in the amount of pain I said I was. (I’d get a paper cut and swear my finger was falling off!) Now my son is every bit as dramatic as I was, lucky mom that I am, and every time he gets growing pains, I have a minor panic attack. I don’t want him to go through this.
I recently spoke to a mom of a child with CRMO. I gave her what advice I could. It sucks. There’s not much that can be done during a flare up. There are some medications out there, I have seen people mention them. Anti inflammatories are amazing when you have a flare up.
When I was diagnosed, there was nothing on the internet about CRMO. Now there is, but there’s not a whole lot. There are finally Facebook groups (there are a whopping 2!) that are filled with patients, parents, family members, trying to understand & share knowledge and advice. Every day, I see photos of children going through exactly what I do. It sucks. I’m sure there’s a much prettier way to word it, but I’m a straight shooter. It does get better.
Here a couple websites that I’ve found that do a great job explaining exactly what CRMO is.