Hello 🙂 regular poster but new to this board!
Background: I’ve had chronic pain in most joints for many years, ramped up massively over the past couple of years. The pain is particularly horrendous across my lower back and in both shoulders. I’ve dislocated my shoulders multiple times without injuring them to cause it to happen. My jaw dislocates regularly (fortunately painlessly), as do most of my fingers. Every joint in my body cracks and pops like a bowl of Rice Krispies. I’ve had one shoulder surgically repaired to correct instability, which has helped somewhat. The other shoulder is yet to be fixed and is unbearably painful most days. I take pregabalin and cocodamol, which offers little relief. The pain keeps me up half the night so I’m constantly exhausted, and on mirtazapine to treat this as well as anxiety. My orthopaedic surgeon, three physios and my GP have each independently assessed me as hypermobile, with a score of 7/9 on the Beighton hypermobility scale, hence the referral to rheumatology.
Today, I walked into the rheumatologist’s office and he started with leading questions about whether I was depressed (no), whether I ever feel confused/fuzzy-headed (no) and whether I had any digestive issues (yes). He assessed my mobility against the Beighton scale again, and I performed each of the tests like a bloody monkey (both thumbs touch my forearms, my pinky fingers go back past 90 degrees, my knees bend backwards and I can put my palms flat on the floor with my legs straight, my elbows are thankfully fine). We finished the test and he announced I’d scored zero. I was quite surprised by this as 5 different professionals have assessed me as hypermobile and I can also plainly see it for myself! He brought up my shoulder MRI reports on screen and commented that they were ‘terribly damaged for my age’ and when I pointed out that each MRI was done after several years of repeated random dislocations, he asked if was was ‘sure I hadn’t injured them’.
He then sat down and said that his initial suspicions had been correct and that he thought I had fibromyalgia. I don’t think I have fibromyalgia at all, I agree with my orthopaedic surgeon that I have several features of hEDS (lax joints, stretchy skin, bruising, weird scarring).
I feel like I ought to ask for a second opinion from a different rheumatologist, but I don’t know who to approach?! I’m a nurse so I should know, but I feel so bloody awkward about it! I feel entirely fobbed off and gaslit that my obvious issues have been ignored and that I’ve been labelled as having fibromyalgia because I’m a bit chubby and I’m already on antidepressants. I don’t really care what the diagnosis is, I just want the pain to go away and not to be made to feel like it’s all in my head, as he made me feel today. 
This has turned into a huge essay, sorry! I don’t know if I’m looking for advice, or a moan, or what, but I am thoroughly miserable with the pain now.