After a 9 year search and a “dx” of fibromyalgia I’ve only ever viewed as a place holder, an angel of an acquaintance told me about EDS. I was skeptical since I’ve never had a dislocation. As I dug into info online, I came to the conclusion that at least 5 family members have been suffering unknowingly, some of us for decades. 4 of us have had “nursemaids” elbows or slipped knees (releases like nursemaids elbow when bent), hips that slip/grind, excruciating tailbone pain, or surgery for loose shoulder.
I believe we all suffer from POTS as well, possibly hyperadrenergic. Even my 7 year old has vision black out’s upon standing.
My 13 yo son has had unexplained and undiagnosed hives since he was 6, (the “skin writing” kind) which must have something to do with mast cells, though I don’t understand much about it.
My mom and I may also have Chiari Malformation, or at least the symptoms. I get the base of the skull headaches with that sickening feeling, and my mom was recently hospitalized with horrendous “migraines” out of the blue. Of course, no answers, only meds. Due to that and a limp from her hip pain (her ortho says she’s a-ok), she had to retire at age 53 from a job she loved.
We’re in WPB and the acquaintance was dxd by her physical therapist, Dr Wexler, Palm Beach Orthopedics, but she does NOT have POTS, so I’m not sure if he’s the best for us. At least he’s a start!
TIA for any suggestions!