this post was submitted on 11 Jul 2024
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Yup! Ehlers Danlos Syndrome is a BITCH. I was diagnosed in 2014 and I wish I could go back in time and scream at younger Shelby to quit gymnastics, quit cheerleading, and quit my job as a contortionist... on the outside, I look healthy and even do boudoir for a living, but my doctor says my ligaments are similar to someone in their late seventies. It's hard when you look "normal" because everyone assumes you're faking it.
I suspect that I have Ehlers Danols. I have an appointment with a new doctor next month to look into a possible diagnosis. When my wife first found out about EDS and said she thought I might have it I was just like "whatever", but then the more we looked into it the more my entire life made sense. I'm not saying I hope I have EDS but it would be really nice to actually have an explanation for the constant pain and unstable joints.
You're in luck! I volunteer as a Disability advocate for EDS and Rising Voices of Narcolepsy.There's a test for EDS called the Beighton Scale. If you have all 9, it's a guarantee for the hypermobile type of it called hEDS. Even if you've got 5-6 on the scale, you probably have it. 9 is the worst, what I have. I've needed multiple surgeries and was designated as fully disabled by a judge in my early 20s.
Having answers brings peace of mind, but what's even more important is that your treatments will change. People with Ehlers Danlos Syndrome ABSOLUTELY CANNOT use the antibiotics in the Cipro family. It causes vein collapse, circulatory system leakage, and aortic aneurysms. It can kill you. You also can't do most stretches, so Yoga is a no go and physical therapy can only focus on strengthening your injured areas.
Here's the test. Hope it helps!
https://www.ehlers-danlos.com/assessing-joint-hypermobility/
Thanks for the info. The Brighton test is actually what led us to start looking into EDS. I easily get 4 points with the pinkies and thumbs. I'm not sure on the knees and elbows, I go past straight but I didn't know how to properly measure what angle I get to. I cannot even come close to touching my toes because my spine does not curve the way it is supposed to.
I did not know about the antibiotic, that is good info to have. I did know people with EDS need to be particularly careful with stretches and yoga but had not really thought about physical therapy. Last time I was in PT for my spine I ripped my collar bone most of the way off of my sternum so that makes sense.
Again, thank you for the info.
Ouch! I'm so sorry!
For the bending backwards scale on the knees and elbows, anything past 180° counts. My knees and elbows curve back pretty far. The more severe the degree, the more severe the EDS, normally. Also, get checked for Cardiac EDS. It's the most deadly. It's basically EDS for veins and arteries. EDS also leads to the conditions where POTS forms and that's its own can of worms