Ehlers-danlos syndrome, anyone?

Hey! I'm currently going for my diagnostic for EDS hypermobility type since my doctor and I believe fairly strongly that I have it after so many injuries. I was wondering if there was anyone else in the MFP community that has it since we're a rare breed. I've been told to brace or compression sock my joints to try and keep myself from injury during exercise and was wondering of who else was out there in the same boat with hypermobility type (however I'd love to just connect with EDS folks of all types!)?!

Replies

fbinsc

Hey I hope you find a lot of good advice, I'm not sure how many people here have EDS but if you don't get good responses you may find more information on the patient support websites. I'm not familiar with them first hand but googling will give you some options (for instance the national EDS foundation has a message board for patient support).

TehLaughingDog

Oh yeah. I've checked those all out. It's just a weird situation trying to find EDSers who have issues with their joints and trying to work out. I guess I'm a strange breed haha. Thank you though!

cafeaulait7

I'm sure I do, as I'm very hypermobile (that's diagnosed) and my family and extended family on one side also have most all of the other signs of having it in the genes.

I've had problems with all my joints for as long as I can remember. Friends called me a hypochondriac, because most people only have one or two joints that bother them in athletics, etc. My doctors agree that I probably have it and just tell me to do what I've always done -- watch certain activities, wrap things for support, and try to build key muscles to support all my joints.

Fortunately, mine never dislocate. I used to pull tendons or ligaments and get sprains all the time. My hypermobile kneecaps were something I didn't know about, though, so they ground down and now cause more of an issue than I would have liked! I didn't know they weren't tracking correctly all those years.

TehLaughingDog

Yay! Another zebra!

I've had issues with my tendons and ligaments. First involuntary dislocation for me was this summer but I can get my shoulder to subluxation and my hip I can feel like I can dislocate but it's one of my really bad joints so I don't push it. But since the dislocation my ankle hasn't been the same since. I love running but I don't know if it's practical until getting better bracing.

It's funny how dismissive friends are of issues when you can't physically see them. I've had so many tell me to stop worrying about it prior to my doctor's validation so then I'd stop and reinjure =P

How do you wrap yourself? I've been using compression sleeves and occasionally sport tape (for my knees) however I hate things stuck to me so I'm not great about it. I don't think the compression, even doubled up, is enough though in my ankles and I'm looking at some braces.

cafeaulait7

Yeah, I'd reinjure all the time by trying not to wear any support! My gut told me I'd better support it until it felt better, but I got teased. Those were my ankles, mainly, which I can sprain any time there is a curb around or by having new shoes or whatever

I tape it when I get plantar fascitis, but for my ankles, elbows, wrists, or knees (not the patella part), the regular Ace supports for it do well to protect against problems for me (thank God). Or an Ace bandage wrapped as if it were sprained if it's already hurt some.

I was so happy in school when our female basketball star wore a sportsy ankle support, which I didn't know existed. I was still a preteen. I got the sports kind of supports after that and people didn't tease nearly as much about wearing those for activities, lol! Those back then were basically tight Ace-type injury supports that were in sporty colors with sports logos instead of beige injury-looking wraps.

The silliest-looking was probably archery in college. I had to wear support on each elbow and wrist or everything fell apart! I just could not stabilize all those joints enough for the weight of the bow otherwise, and much swelling and pain occurred before I said screw it and put them all on! It worked great, though

melaniefave41

I've been diagnosed as being hypermobile, suspected of having EDS, and have some other mystery autoimmune stuff going on. Had to quit doing patient care (worked in ER and with dementia patients) as I kept getting hurt and not even always realizing it at the time. I run regularly though and do some strength training, and try to help myself further with careful dietary choices (most of the time

tomatoey

I'm not sure if I do or not. My physiotherapist thinks some kind of connective tissue disorder is likely. Also no dislocations or surgeries. I'm hypermobile (do get subluxed shoulders) and get overuse injuries very easily. I have several at the moment, so am only doing PT and easy biking.

One rheumatologist thought EDS might be possible, but said it wasn't worth doing the test, because you can't do anything about it anyway.

My PT didn't give me particular advice about prevention other than watching ergonomics. And obviously, limiting activities. No running or other impact bc ankles & feet & knees all have issues, no lifting bc of upper body issues. Hopefully they'll improve and I can get back to at least a minimum of strength stuff.

One thing to NOT do. Stay away from high reps.

AJMB704

My mom appears to have it (she has the weirdest feet, has had lots of surgeries on them and her podiatrist was the first to theorize about it) and I appear to have some super mild version. My skin is ridiculously silky and soft (hah) and I have a crazy bendy back with scoliosis issues. I bruise the second I accidentally knock into anything too. I also have undiagnosed stomach issues (major bloating nearly nightly, but not IBS) which I have read can all be connected. Haven't been tested as it mostly doesn't affect me or my quality of life, but it's certainly an interesting syndrome.

Gogohobbs

I also have EDS and dealing with a bad pelvis injury.. Feel free to add me