u/hellbugger

I don't even fully understand what a rheumatologist does in relation to hEDS, but my doc seemed certain referring me to the rheum was the next step in my (probably) hEDS journey. I was also referred to a geneticist, but they told me they don't do anything in regards to any form of EDS, so that was a bust...not like they can test for it anyways.

I appreciate any advice/suggestions so I don't feel like I'm going into this appt completely blind. I'm honestly surprised my doctor took me serious. (It's been a long road to get to accepting I likely have hEDS...probably MCAS and POTS, but one thing at a time. Spent thousands on dentists/orthodontists for jaw pain the past 20 years thinking TMJD was my only issue causing so much pain and migraines. I have been not believed and conned and ignored and gaslit by doctors. My amazing husband was the one who brought hEDS to my attention 2 years ago and I finally accepted I have a fuck ton of symptoms and brought it up to my PCP.) My doctor let me read out the whole symptom list I put together and typed it all out for my file. And after I read it all out and felt so embarrassed sharing everything I deal with daily/nightly, she said "I can tell you're hypermobile just by the way you've been sitting in that chair trying to find a way to be comfortable." We also went through the checklist criteria for hEDS and I have the criteria for it. It's nice to finally be believed, now I'm nervous I won't be believed by yet another doctor. Sorry for the ramble. Just nervous for this rheumatologist appointment and want it go to as well as it can for me. I hate anything medical related, but I feel like I have to do this for myself. I owe it to myself, especially if I am finally so close to an answer to what I have been coping with for so many years.