So I have now seen the rheumatologist that my physiatrist referred me to (see that story here). And… I kind of have an answer? Part of one, anyway. Enough to feel validating.
First, I actually basically saw his med student. Granted, she was in her fourth year, but if I had realized I would only see the doctor for all of two minutes (if I’m being generous), I might have said no when she asked me if her checking me out first was okay. She asked me all kinds of standard rheumatology questions (redness and swelling in the joints? fever? etc.), then checked me on the Beighton scale.
For those of you who don’t know, the Beighton is a simple way of assessing generalized joint hypermobility (link here for a bit more about that). It was actually developed originally as a research tool, since it is quick and easy to administer and assess, and ended up becoming a clinical tool. It involves examining the range of motion of fingers, thumbs/wrists, elbows, knees, and full body/lower back and lower limbs. It is scored from 0-9, with one point given for each positive result on either side of the body. For example, if your pinky finger will bend backwards past 90 degrees on one side, that’s one point, or if you can bend over from a standing position keeping your legs straight and touch your palms flat to the floor, that’s one point. Normal is somewhere in the 0-3 range, and above a 4-6 (depending on your source, and your age) is considered hypermobile.
I apparently scored a 9 out of 9, although one of my elbows was questionable/borderline. So I am definitely hypermobile. And I have a history of chronic joint pain, frequent and recurrent injuries, and subluxations (although I still haven’t gotten a clear answer on whether my hips dislocate on occasion or not). The med student also asked me if I have hyperextensible or stretchy skin, and after I said I didn’t know because I wasn’t sure what counted as hyperextensible, she never ended up having me check. (Now I wish I had just demonstrated because that always seemed like a somewhat borderline possibility to me, and since I scored way higher on the Beighton than I expected, I now wonder if it is possible. I assumed the doctor would check though.)
The student kept mentioning things she would check with the doctor on, or have him check, but he only ended up coming in very briefly and just telling me that with these kinds of issues the main thing to do is physical therapy to work on strengthening the area for stability, which I am already doing. He also offered to prescribe me something (mild) to help with the pain, which I appreciated. And… that was basically it. He never examined me, which kind of threw me for a loop. If I had fully processed that that was it at the time, I probably would have asked more questions and possibly actually asked him to examine me, but I was a bit surprised and didn’t think of it until after.
So, either way I definitely at least have what is now called Generalized Hypermobility Spectrum Disorder (similar to what used to be termed Joint Hypermobility Syndrome), and it seems to be unclear whether I have Hypermobile Ehlers-Danlos Syndrome (although I think I at least would have had a pretty good chance of meeting the now-old Brighton criteria for it, as I would meet the 2 major criteria easily plus 3-4 additional minor, the newer criteria I think might be less likely).
It wasn’t the best doctor appointment I’ve had, but it wasn’t the worst. And even though I feel like there’s still a bit of uncertainty, I am happy to have this much of an answer. Honestly, it just feels amazing for someone to say ‘you have this, which is why you have pain.’
Some people have suggested that a rheumatology department is not the best place to go for an EDS assessment, and that I should get a referral to a geneticist that might be more familiar with the disorder. I may explore that avenue later, but for now I am enjoying having a part of an answer, even if it’s not quite as clear as I would like.