so i finally got the official diagnosis last month. took bouncing between three specialists, two inconclusive imaging rounds, a rheumatologist who basically said ‘here’s the diagnosis of exclusion,’ and five years of ‘it’s probably stress.’ but here’s the weird part: the diagnosis feels like it doesn’t actually explain what’s wrong with me. like, i track my pain in detail - time of day, activity level, sleep, stress, what i ate. and my pattern doesn’t match the typical fibromyalgia description.
my flares don’t come from activity. i’ll have a completely low-pain day after working a double shift at the pharmacy, then a 7/10 pain day after just sitting. the tender points they tested? yeah, some hit, but not all the classic ones.
the doctor said ‘it could be fibromyalgia overlapping with neuropathy’ but nobody can tell me which is which or why one flares and the other doesn’t. so the diagnosis was the endpoint, not the answer. i’m not mad about the diagnosis. having a name helped with the system.
but i’m frustrated that now everyone (family, docs, even me sometimes) acts like the diagnosis explains the pain, when really it just… names the confusion. does anyone else have a diagnosis that’s technically correct but doesn’t actually map to how your body actually works? how did you move forward with that gap?