Here are two more cents to throw in! I have abandoned the idea of ever getting a diagnosis. That’s not entirely true- I have a positive ANA test and I have symptoms and I have a diagnosis code that providers can put on my chart. But… it’s actually kind of a made up thing because there isn’t actually an agreed on criteria for it - it’s this grey area when someone has symptoms of a connective tissue disease and has at least one lab value that supports it, but they really just don’t actually have enough symptoms or organ damage or weird labs to really diagnose them with an actual connective tissue disease. Basically, I’m not (yet?) broken enough for a diagnosis…? This obnoxious grey area is termed undifferentiated connective tissue disease, and I kind of hope I don’t get more symptoms and end up elsewhere.

Also- the treatments at this point are the same, so I’m not missing out on anything.

The point of me sharing this is to say this- you know that you have inflammation and that you have pain (and insert your other top symptoms here). So, my big question (which if I were at your visit with you) would be this: what is the plan for addressing my widespread inflammatory pain?

I spent so much time and energy trying to figure out “what is this? What is the overarching cause for all of this?” And none of that energy or time ever actually helped me feel any better. And… all those conditions I was looking into and thought I had didn’t have any cures anyway, they were all about managing symptoms. So here I am with practically normal labs hoping I can just manage my symptoms and stay mostly OK for as long as possible.