Also another disorder than needs to be on this list is Osteogenesis Imperfecta can cause the same symptoms as EDS, but it a collagen disorder that also causes brittle bones.
My daughter has this and is considered extremely mild, yet her knees caps fall out of place and she still walks with it. Her ribs also move and she has been diagnosed with slipping rib syndrome
That sounds really tough, thanks for sharing info about it. Your daughter sounds like a pretty tough person too, dealing with all that.
It really is amazing what our bodies can still do even when they’re not working optimally. I suspect I have some form of hypermobility thing (most of my joints bend further than they should) but not bad enough to be diagnosed. I bruise easily (good thing I do Aikido or else someone would be concerned that my spouse abuses me), I’ve sprained or dislocated probably half my limb joints, the tendons in my elbows hate me so much they can’t decide on tennis elbow or golfer’s elbow so I get both, was diagnosed with osteoarthritis as a teenager (long lean bones, crappy muscle tone despite being quite active, physiotherapy has helped it not get any worse in the last 20 years), I often have joint pain but rarely have joint inflammation enough to affect range of motion even with a sprain or shoulder separation (yeah, did that one to myself at the dojo and drove myself home afterwards even though the end of my collarbone sticks up now), and somehow had a stress fracture of my spine that I never even noticed happened, we only foind out after an MRI the second time I was laid flat by sciatica. I’m also mildly allergic to a lot of things, my lungs try to seize up at the merest provocation (bra too tight? Wheeze!), and I get random intermittent minor but really annying inflammatory reactions (a few times it was bladder, twice stomach, once esophagus, twice intestines, once kidneys, right now my eyes and achilles tendons). I’m an uncoordinated klutz and I think some of my muscles don’t activate when they should so they end up really weak, but years of physiotherapy, strength training and consciously activating muscles at least has me in a place where I’m functional and not ALWAYS hurting myself. Just often. I’m getting better at realizing that just because my body CAN do something in a stupid position, doesn’t mean it SHOULD, and I often wrap joints to remind myself not to hyperextend things.
I have a friend with EDS (complete with the chronic fatigue) and she keeps telling me to go get tested, but at this point, I don’t think there’s anything anyone could do more than what I’m already doing to keep this slightly defective meatbag in condition that I can still do all the things I want to do, even if I sometimes have to find workarounds that other people don’t need to use.
I feel like Aikido is so good for folks like us, it helps strengthen as we flex. Though I recently realized I sometimes lock my elbow for certain techniques like Jujinage as a way to maintain a sense of realness when being thrown, because my wrists are so flexible. With solo practice in these Covid-19 times I’m focusing on trying to maintain soft power through my arms instead of locking!
Anyway, wow it certainly sounds like you have EDS or Hypermobility Spectrum Disorder. What’s EDS and what’s HSD can change sometimes as they keep drawing different lines. I think the important thing is that’s it’s really valuable to learn about EDS and Hypermobility in some detail, so you can understand and be kind to your own body more.
Hypermobility isn’t taken seriously enough, so sometimes I feel quite passionate about being hypermobile and not EDS. BUT, because hypermobility isn’t taken seriously there may be time/s when EDS is a more helpful label to be an advocate for yourself or to get the healthcare you need. For example, just being hypermobile can mean you have heart issues, one of the places hypermobility problems can manifest is around your heart valves! But with my insurance in America an EKG is only covered if you have EDS, if you are “just” hypermobile they expect you to pay for it out of pocket, regardless of the experts referring you to get it.
Ooh, and I should add, one of the awesome things about my journey to explore whether I had EDS and what HSD was was that Harborview Rheumatology ended up referring me to one of the most amazing and different physical therapists I’ve ever seen!
As a philosophy, if you can find someone with the highest level of MatRx certification, they are truly amazing. The way muscle groups and chains are systematically tested, activated and given exercises has helped my over all strength, core and stability in ways I didn’t think possible! I think the systematic approach is so very helpful when it’s so easy to be unbalanced when you’re hypermobile.
Their messaging talks a lot about muscle tightness, but from the perspective that muscle tightness is an indication of other muscles being weak and communications breaking down with your nervous system, so it works really really well with hypermobility as well (especially if like me you do have super tight spots that help you stabilize!) https://muscleactivation.com/about-mat/faq/
Thanks so much for the awesome mention. The main thing about Ehlers-Danlos and Hypermobility Spectrum Disorder is management of our symptoms and belief that it is real. Take care everyone!
Thanks Jane, great advice!
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