u/Grrrrr_Arrrrrgh

Is anyone else tired of talking to your doctor about your crippling fatigue or chronic pain only to be told, "Well, your labs look normal..."??

I finally got a neurology referral and she seems to actually be taking me seriously regarding my headaches and back/neck pain. She fully agrees Xrays are useless and is sending me for some MRIs today.

I don't want the MRIs to be normal. I want them to find something wrong so we can actually address it and possibly improve my quality of life.

I have Marfans, so there's up to 92% chance from that alone that I have dural ectasia. It would explain a lot of my back pain, headaches, etc.

If I have a diagnosis, then they can treat it or at least improve the symptoms.

So yeah... Here's hoping that my MRI shows something interesting 🤞🏻

Wish me abnormal results!

Hi everyone!

I just discovered this sub and I just wanted to say how lovely this community seems.

I don't have EDS, but another connective tissue disorder called Marfan Syndrome (MFS). I've experienced symptoms related to my hypermobility and musculoskeletal issues most of my life and have now added GI into the mix 🙄

The Marfan sub is mostly a bunch of dudes discussing their body image issues and it just isn't a place that has ever felt welcoming to women or a place where much is discussed beyond body image and the doom and gloom of heart issues.

As I've continued to do more research into MFS, I've come to learn how much overlap in symptoms there is with EDS. Reading through posts here where y'all are discussing the chronic, daily experience of living with a connective tissue disorder... and doing so with such humor and camaraderie... It's just wonderful.

I'm just a girl, standing in front of a sub full of fellow individuals with connective tissue disorders, asking if I can hang out.