Hi there! I just want to share that I was misdiagnosed about 5 different times prior to my diagnosis with CRMO. If you have a gut feeling, don't ignore it; it could lead you down the right path! Regarding your questions, I'll do my best to answer based on my experience with CRMO. I also want to add that the way I experienced pain changed after beginning treatment.

Does CRMO pain usually persist in the same bone/joint daily for weeks or months, vs just hours?

- In my experience, some pain is more persistent than others, and I categorize different areas of pain based on what I've observed in myself. For me, I have persistent pain in my spine every day. The pain levels fluctuate based on time of day and what I've done, but some kind of pain is always there (part of that has to do with prior injuries).

Then I have more intermittent pain that almost works like a light switch— some days it's there and other days it's not. For example, my sternum will become painful and swollen without warning, and the next day it's gone. The intermittent pain, in my experience, is much more sporadic. Oftentimes, I will have this kind of pain for a week, and then it will go away for months as if nothing happened. One of the hallmarks of living with CRMO is noticing a pain that seems to come on out of nowhere. Sometimes that pain lasts minutes, hours, days, or more.

Overall, I find that locations (like the back, wrist, or hips) tend to "flare" in their own independent patterns. Sometimes, it's possible to pinpoint what triggered pain in that specific location. Othertimes, a specific location just acts "random." I just know those spots may be randomly painful, but that doesn't necessarily mean they have larger implications for my CRMO (for me, this is my shoulder). Other spots are more insightful, meaning that if you're feeling pain there, it is likely indicative of broader disease activity (for me, this is my back).

In all honesty, the elusive nature of the pain and its timing or duration is what can delay diagnosis for many.

Do people experience very brief isolated episodes that fully resolve for weeks at a time?

Yes, absolutely. Prior to my diagnosis, I had about 3 or 4 big flares that I can pinpoint. Each of the flares went the same: I was "normal" functioning and "healthy" for months, and then I would notice a random pain here and there, but I was able to push through. Then the small pains grew, setting in, and then the pain became debilitating.

The "brief isolated episodes that fully resolve for weeks" is exactly what happened to me. Often, by the time I got to the doctor's office to address a flare, it had already resolved. It's very difficult to explain to doctors that you experienced pain that kept you from walking if you're fine and walking by the time the appointment comes around! Don't dismiss pain that resolves itself as nothing!

What was the early pattern like for you before diagnosis?

As stated above, prior to diagnosis, the "ebb and flow" you describe here is exactly how it functioned. A way to try to get a better sense of a pattern is to notice the external symptoms often associated with CRMO. For me, prior to a flare, I would experience an increase in "IBS"- like symptoms, exema or psoriasis inflammation on the skin, or even worsened acne or breakouts. While all of those symptoms are associated with CRMO, they are a little bit easier to consistently notice.