Feel so gutted after Rheumatology appointment

So whilst I’ve been told I have EDS from other medical professionals (like orthopaedic surgeons) I’ve never actually had a proper diagnosis or seen a rheumatologist. I finally got an appointment after my symptoms have gone seriously crazy the last 12 months.

I explained everything, long history of dislocations and operations, and then a big uptake in symptoms the last 12 months (had to use crutches for my knee, herniated disc and small fibre neuropathy which is new and scary) I also have a lot of the skin and stomach issues stuff.

He did some examinations, he then said that whilst I fit most of the EDS criteria, he couldn’t give me a diagnosis due to a newish guideline that says you should have one parent with it (apparently my grandma who had it doesn’t count, has to be 1st generation relative). He said if I had that he’d be giving me a diagnosis of it, but as I don’t he diagnosed me with hyper mobility syndrome.

I don’t know why that feels so terrible. I know most doctors don’t know what EDS is anyway so it’s not like they’d treat me more accurately knowing that. Also the treatment from rheumatology for both conditions is the same (ie fuck all) so it’s not like I’ve missed out on any treatment by not reaching the criteria. I think just the validation would have been nice, it’s hard to suffer so much and then be told you just have hyper mobility, which is a spectrum basically everyone is on.

He then said that what’s happening to my knee and neck is normal degeneration of someone with hypermobile syndrome. I then asked if the nerve pain was related to hypermobile syndrome, as that’s obviously a new and escalating symptom, and he was a bit like “er… er…. Yeah sure it can cause all sorts” 🤨 so who knows. It was a very sloppy appointment to be honest, lots of confused back and forth from him.

He did say I should get better as I get older and stiffen up, I wish I’d asked how much older, as it feels the opposite at the moment and ever since I turned 30 it’s all gone downhill from there! So overall just another story to add others of rheumatology being the most useless department ever, luckily I didn’t have any expectations before I went in. I guess my position hasn’t changed, I still “might” have EDS but don’t know for sure, and the treatment plan for hyper mobility is still the same. I just can’t believe it took me 37 years to maybe finally get a diagnosis and then it didn’t happen.