As far back as I can recall (I’m 67 but have pretty good recall to age 3), I’ve dealt with unexplained pain and inflammation. I think I’ve seen at least one specialist in just about every common specialty there is. Lab work rarely provides definitive answers - just that this level is off or that marker is elevated. Imaging and other diagnostic tests are at the mercy of insurance companies and bank accounts, but I’ve tried my best.
My daughter has had the same experience. Briefly: FsUO, joint pain, skin inflammation, edema, muscle weakness/abnormality in muscle repair, neurological abnormalities, and malignant hypertension - accompanied by identified autoimmune, endocrine, and skin disorders that don’t explain all the symptoms.
I did have one osteopath tell me it was unlikely I’d find answers in Western medicine.
The last time I felt “well” was September 15, 2007 - it lasted for one morning. My daughter would likely say she’s never felt “well.” Incidentally, my mother also had similar issues.
I keep a spreadsheet of all the family medical issues, and it’s a long one. My sons also have unexplained issues but not close to the same degree, so I’m wondering if it’s an X chromosome abnormality. We’ve had providers roll their eyes, tell us they “don’t handle complicated cases,” and advise us to “go to a research center.”
I would be happy to learn there is a genetic issue that the Drs are missing that would account for the multitude of problems. At least it would be an explanation.
I’m willing my body to medical research in the hopes they can find answers.