As I count down the days of the week left before my third knee surgery, I find myself in limbo once again.
Today, I finally had my appointment with the Rheumatologist I’ve been waiting to see since I booked, maybe 4 months ago. It was underwhelming, to say the least. He had been recommended through an EDS forum as being one of the only people on the Gold Coast who could give an official diagnosis for EDS, especially Type 3 (Hypermobility – my type). I’ve seen countless doctors, physios, occupational therapists, chiropractors and podiatrists who all agree that I have HEDS, not least of all my orthopaedic surgeon who operated on me, my father and brother, but somehow they are all unable to give me that one elusive diagnosis. Only the rheumatologist or geneticist can (and there’s no gene for this type of EDS, although apparently they will still do the testing for ~$2K), and he….well, I’ll run through what happened.
First: he did the exact same physical test (Beighton score) that all practitioners have done on me, with one major exception: he did a bafflingly condensed version with no follow-up questions, despite having my entire medical history in front of him in writing, as well as knowing I’m about to have a third patellar stabilisation surgery on my knee. He basically had me pull my thumbs back to my arm (tick), hyperextend my elbows (tick), lightly touched my fingers a couple of times (??), asked me to touch the floor with my hands (tick) and seemed surprised that it was so easy, then had me lie on the table and touch my knee, tried weakly to make my legs hyper-extend (the one that has had two surgeries now doesn’t hyperextend for the exact reason I had the surgeries – something you’re supposed to count in the score), then made me lift my legs in the air and move them around slightly. After which he drew a stick figure of the supposed points of the score – one of which was in the groin, er, sorry, what point is that???? – and counted that I made 5/9 on the Beighton score. Every other person I’ve seen has confirmed I’m 8-9/9, but fine, I guess that still qualifies.
Then he said he’ll write a letter confirming I have Benign Joint Hypermobility Syndrome, aka Hypermobile Ehlers-Danlos Syndrome. Which…is not correct anymore, albeit in the controversial new diagnostic criteria, which has its own severe shortcomings. Oh, and for fibromyalgia; something I thought was difficult to diagnose in the first place. I really don’t care at this point if I have fibromyalgia or dysautonomia or Raynaud’s or whatever else in tandem with EDS, because although they may be difficult to deal with, the bane of my life is the dislocations I’ve had since literal birth (born with a dislocated hip) and subsequent daily pain and fatigue, deterioration of joints and the lack of management or belief by others in something that is clearly demonstrable. I’m not taking away the experience of others with these issues, however in my case, having had three major surgeries already in one area for this specific reason and most likely several others in the future, this, to me, is the most urgent and legitimate cause for any concern or want for diagnosis.
When I asked “Ok, so what now?”, having been told that seeing a rheumatologist is the be-all-and-end-all, he said I can take an anti-epileptic or antidepressants to help me sleep, however after some discussion I basically prescribed myself some Melatonin instead. He said I can do the most basic exercise, like hydrotherapy, pilates, and surprisingly yoga (a big no-no for hypermobility). If I want to get some kind of disability recognition or special consideration for uni, I have to go from a rheumatologist back down* to a physio for a physical examination. And that was it.
[*I don’t mean any disrespect here; physio has done me the most good out of anyone, barring my last knee surgery, I’m merely highlighting the fact that it was built up so much to see a Rheumatologist to get the ultimate help, and instead he directs me right back down to the first point of contact to make any kind of progress. ]
I don’t even know what to say right now. I’m not sure what I expected, but I thought at least there would be an “Okay, this is a clear case, let’s do a proper Brighton criteria to make sure, I’ll give you the proper diagnosis, and this is how we manage it and where we can go from here”. Not: “Umm…yeah…ok…so, you could do some yoga and take some supplements to sleep, ok? Thanks for coming in”.
Literally any other person, including occupational therapist, physio or GP could have diagnosed me (and have) in a fraction of the time, and for a fraction of the cost. But since they don’t have the title of Rheumatologist, even though they use the exact, and in this case more thorough, diagnostic criteria, there is absolutely no validity. It really feels like a system designed to keep you from getting the help you need and have overwhelming evidence for, for the arbitrary reasoning that seems to be the same as how the new criteria for Hypermobile Ehlers-Danlos was created in the first place, and which has been denounced by pretty much everyone in the community, minus a handful of people.
I empathise with everyone who has gone through this process, and worse. One of the most debilitating things about EDS is not just the chronic pain from dislocations that result in anxiety, depression and other systemic issues, but the fact that as an ‘invisible illness’, doctors tend to diagnose such conditions in a lackadaisical, haphazard manner. Even the Ehlers-Danlos Society itself doesn’t send a clear message to a majority of its sufferers. When your main advocacy group, and the medical community don’t understand the issue enough, then what hope do we have in getting the general population to understand our plight?