Just diagnosed. Many thoughts and feelings!
I just got diagnosed today with hEDS (pending genetic testing and ruling out other autoimmune stuff doctor is sure I don’t have) and I have roughly one thousand thoughts and questions!
Here is my list of things that I wonder if they’re related to EDS:
Very high pain tolerance
A history of severe belly pain, unexplained even after CTs etc, that requires IV pain meds in the ED when it gets bad
Waves of exhaustion throughout the day
Mental health stuff- history of pretty intense OCD, depression, anxiety, cptsd
Diabetes, fatty liver
Feelings of brain fog- using the wrong word both in speaking or reading aloud, word finding difficulties, memory issues, dissociation….
Arthritis in my knees and ankles
My knuckles crack constantly and my knees crackle sometimes when I walk. One knee can kind of pop out
Other info: I got a 7/9 on the scale
Concerns I have! I’m a nanny which is a fairly active job. I’m worried at some point I won’t be able to continue. But it’s the only thing I’ve ever done and I’m good at it.
Gymnastics! I started adult gymnastics again a year or so ago (I’m 40) and I LOVE it. We are currently on a break because a month ago I fell off high beam and sprained my ankle badly. My OTHER ankle had apparently one working tendon. I’m worried I’ll never be able to do gymnastics again, either.
I don’t think I have exactly specific questions but I would so so so welcome any thoughts about any of this! Thank you!