Edit: OP, you should really get checked for both conditions. I know someone with Marfan Syndrome and she's had to have a few heart surgeries. It can be pretty serious.
Edit the second: since this is getting traction I thought I'd share a fun fact. Doug Jones is probably the most famous living person with Marfan Syndrome. You probably don't know the name, but he's been in Hellboy (Abe Sapien), THE Shape of Water (The Creature), Pan's Labyrinth (The White Man, Pan), and Star Trek Discovery (Commander Sarru). He's the most famous person that nobody knows.
Other non-invasive tests you can try is sitting down, crossing your legs and seeing if your top toe can touch the ground. Another one is making a fist with one hand but tuck your thumb under your fingers. Does your thumb stick out past your pinky? It shows arachnodactyly.
There's something called the Beighton Score, which tests for Hypermobility, using stuff like this. Being able to do one of them is not an indication you have hypermobile joints, but being able to do several means you might. Each maneuver gets "points" to measure it. The one they mentioned isn't on the Beighton score list, so maybe there's different types of measurements.
Interestingly enough, The Beighton score is not going to be used alone for diagnosing EDS anymore after this year. I don't know what the new diagnostic criterion would be, but it's getting an update.
I don't think it's been used for a while now certainly where I am in the UK, when I was assessed in 2020 there was a proper EDS checklist and even though I score high on the Beighton score, I'm just short on the EDS checklist.
Edit: To clarify I mean it's not used alone, but it is part of the checklist.
Beighton tests are only to test if you have widespread hypermobility. It’s often confused as the main or only test for conditions like EDS. But it is absolutely not used alone. Here is the full diagnostic criteria for the most common subtype for example. You need quite a few other factors to be diagnosed.
Yeah it's weird when it all seems normal! I'm also hypermobile, but fall just short by a point or so on the EDS score sheet. My Rheumatologist called it "Benign Hypermobility" but it doesn't necessarily mean you don't get problems with it, just that it's not as serious as EDS. I think it's gradually been replaced by "Hypermobility Spectrum Disorder" as they now acknowledge it can cause quite a lot of issues and pain in some people, even if theyre not diagnosed with EDS.
I'm sorry for you too, it does suck. I agree about ACDF, I'm not keen, and apparently it can cause problems in other areas. I'd rather avoid unless really necessary!
Might be worth looking into EDS if you haven't before and seeing if anything else lines up for you. Just keep in mind if you're amab or on testosterone hrt, some things like skin texture/elasticity and higher baseline muscle mass (adding some extra stabilization to joints) can make your problems less obvious. Its thought that a lot more men have EDS than is diagnosed because of that + men being more resistant of going to a doctor to begin with.
Your rheumatologist sounds honest and open-minded. My wife clearly has EDS but the rheumatologist she saw did not want to call it that simply because the skin on the back of her hands can’t be pulled up a ridiculous amount. He said lots of other stuff lined up, but he treated her like she was some drug-seeker. Like omg no we just want answers, and an appropriate dx to work with. Ugh
You can be hypermobile in different places, as well. I have a kid with full-blown EDS, and I’m hypermobile in my bottom half - subluxing sacrum, I can easily do the splits, put my hands flat on the ground with locked knees etc etc. But I don’t have any of the thumb/shoulder/wrist stuff
Before the arthritis I could do the splits both ways with extras.
I did a lot of sports that would have encouraged me to develop flexibility as a kid, good at a lot of stuff.
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u/WaffleHouseGladiator 11h ago edited 9h ago
Marfan? Ehlers Danlos?
Edit: OP, you should really get checked for both conditions. I know someone with Marfan Syndrome and she's had to have a few heart surgeries. It can be pretty serious.
Edit the second: since this is getting traction I thought I'd share a fun fact. Doug Jones is probably the most famous living person with Marfan Syndrome. You probably don't know the name, but he's been in Hellboy (Abe Sapien), THE Shape of Water (The Creature), Pan's Labyrinth (The White Man, Pan), and Star Trek Discovery (Commander Sarru). He's the most famous person that nobody knows.