Hi there, I’m relatively new here and usually prefer to lurk but… I’m resting up after a hospital visit last week for a psychotic break due to heat exhaustion, stress and pain medication. Hallucinations, paranoia, double vision, manic, and not sleeping 😬. Freaked my family out and I feel like I got hit by a bus. I’m still processing all my feelings and thoughts on stress management (I own my own business, ha!) but one thing has been sticking in my craw. I have had 8 years of chronic pain that was well managed until last year. Since this January, I’ve been seriously trying to get an EDS diagnosis or treatments that help longer than 5 days. Every doctor has been mostly kind but the answer is usually ‘I’m too medically complex’ for them to treat me and also ‘getting an EDS diagnosis won’t change anything’. After this week of navigating all the conflicting doctors’ advice at the hospital (stop that med when I know I’d need to taper off), why am I bothering with doctors? The feeling I get is that no one cares about EDS but also can’t figure out the root cause of my pain in the left arm/neck/shoulders. It makes me feel unwelcome which bleeds over to groups like this. I don’t have a diagnosis but I know I’m a zebra and so are both my kids. Why don’t the doctors know more? That’s mostly rhetorical but I would love to help some strategies to work with the indifferent doctors.

Posted by Julie at 2022-07-30 22:54:12 UTC