Do any of you have primarily tendon problems I have had an ankle that had to...
This is what I have. I've never had more than a few outright dislocations....most of my issues are recurrent tendonitis, bursitis, etc. My shoulder is the worst, but my ankles are bad as well.
It makes it so confusing, doesn't it? What type of EDS were you diagnosed with?
I was diagnosed with Classical EDS.
Classical is diagnosed through a genetic test right? Do you bruise easily? I don't bruise a ton but have really stretchy skin, so was diagnosed with hypermobility type. Sometimes I wish I would've gotten the genetic testing done to know for sure
I was actually diagnosed without a genetic test, with Classical. My doctor has classical herself and I have most of the classical signs (super stretchy skin being the most noticeable)...and she felt comfortable diagnosing with a genetic test. That being said, I do have a genetics appt in April, because I'd like to get a wheelchair for long trips and I need a geneticist to "re-confirm" my EDS.
Also, yes...I bruise easy. I'll put a picture of my skin in the next comment.
Xxxxxxx Yzzzzzz that looks a lot like how my skin stretches. Oddly, I don't bruise that easily so I'm guessing they were right about the hypermobility type for me. Everyone I know of with the classic type bruises. So many weird variations to this disorder aren't there!
I think my bruising is actually due to anemia however. Yeah, there are so many variations as to how all of this presents! The other thing my doctor checked for was "lumps" on my shin bone...so if you run your fingers down your shin, mine has tiny lumps every couple of centimeters. She said that's common in Classical as well.
I have the most awful time with tendonitis. I also have difficulties healing after sprains and I swear I can sprain my ankles while sitting down! It's ridiculous how easy they twist. I'm actually sitting in the docs office now because of tendonitis in my hands/wrist and a possible separated tendon in my finger. Fun times!
You sound so much like me! Wrists/hands and feet are my worse problems. Which sucks because, what can you do for fun that you don't need hands or feet for?! What type do you have if you don't mind my asking
Hypermobility. I was diagnosed by a rheumatologist and an orthopedic doctor. Then I went to a geneticist for confirmation, which he gave me. But he didn't do the genetic testing since he was pretty confident in his diagnosis. I don't think I've ever had a full dislocation except in my thumbs, and my hands are so bad I wish they'd just cut them off sometimes.
That sounds like me too. I get strain type injuries so easily and they take forever to heal. I spent months on crutches this year with one knee that wouldn't heal well, and I can do any little thing and give myself an injury. I easily get tendonitis and have had bursitis as well, and was told one time I had a tear, but I haven't been going to drs whenever I get injured since they don't seem to do much. It's really hard to live so easily injured though.
I was diagnosed with hypermobile type as well. Only had 2 ankle dislocations/subluxations, so we are really similar in that as well!
I'm using crutches for my feet right now and they suck! Causing tendon probs in my upper body. I can't win lol
Yes!!!!! I know. When I use crutches I hurt my shoulders and neck. I hate hurting those spots. My least favorite because I've done it sooo many times. It's hard to pick which spot you're willing to hurt to "save" the other. I was thinking of trying to get a wheelchair soon, just to help sometimes.
Aw, I've so rarely heard of someone who sounded kind of like me. You get these injuries often from doing normal things?
I've had shin splints for two years that will not go away. I've been in PT for six months and still nothing. And I have tendinitis in both shoulders so bad that I'm not tolerating the exercises I need to do to fix them. My PT said my tendons do not respond to exercise the way they're supposed to.
Here's part of my visit summary from the doc. This is only what was discussed today, not a history of things the specialist has seen me for. This is why my hands hurt, lol. So you're definitely not alone in having hands and feet as your worst problems!
My main problems are tendon type as well. I've had tendonitis and/or bursitis in like every joint. Even my jaw. Hips were the worst. My orthopedic gave me a basic dx of EDS and basically said, "there are so many types, but I'm sure you've got it". This was before I knew much about it and I just brought the idea to him. I think I have hypermobility type. My skin is soft and a tiny bit stretchy, nothing like the picture in the comments. I do bruise very easily though.
Such similar problems to mine! these last 5 years I've had multiple tendon/chronic injuries at once. I get so impatient with my body!
I had no idea it was this common before all the comments. Thanks for the responses you guys-makes me feel so much less weird/different!
I have classical type with joint hyper mobility syndrome. I have some trouble with dislocations, but it's mostly subluxations and bad tendon and ligament issues. I sprained my ankles so many times the tendons were torn to shreds and there were no ligaments to speak of. Surgery took some tendon from elsewhere and reattached it in each ankle, but it required titanium screws, and I am still not stable, despite PT follow up. I have hip problems, and some shoulder issues, but my wrists are probably almost as bad tendon wise by now as my ankles were. I bruise easier than most, but I'm also anemic. My skin is stretchy, but not as bad as some that I've seen. I probably have vascular issues too, at least according to the rheumatologist, who wants the geneticist to test for vascular- he didn't the first time because he was sure it was classical and maybe hypermobile.
It's interesting how many of us with tendon problems have problems with our wrists and ankles. It'll be interesting to see in the long run if they ever identify more specific genes associated with the hypermobility type. And if they find that there are multiple types that got categorized under hypermobility. Crazy how much they still don't know about this disorder!
My main issue has been tendons and ligaments
You sound so much like me! Just had my 2nd right foot surgery. What type of foot surgery did you have? I had peroneal and post tibial tendon problems. Now they're both transferred to smaller weaker tendons
Shai - I feel you :/ ::hugs::
Laurabeth Von Fange all the time-even typing and writing too much causes issues:/
Wow. So the same. I can barely write and I can type, as long as it's not too much at once. Also among those wrist and hand hurting things that add up, are chopping hard things, grating cheese, can openers, stirring anything, piano, crocheting, playing games on the computer or phone (too much wrist moving), and I'm sure others, but any combo or too much of one and I've hurt my wrist or hand. I wonder if there's some kind of different EDS or something that's this version specifically...
WoW ... You described me to a tee !!! ~ that's where I am with my Dx of EDS ... and. Tendons. ...looks like you. And I have gone through the same issues ... All theway ... (Especially regarding feet. ... I've had the same ... Now they're about to put some cadaver tendon in next month ...ugh - O'well... I've decided to name my left foot" Charlie" and right foot "Betty" ...ha ha ha !!!! ~ Gotta name em'
I had a "post tibial tendon dysfunction" surgery on each foot (twice) .... 'Bout to have a 3rd .... They ended up using screws on each heel to straighten it out )
I had a tibial dysfunction surgery in the be beginning- ( I had a tibial dysfunction surgery in the be beginning- ( it was amazing....chsnged my life ) ...but now l88l was amazing....changed my life ) ...but now l88
Grrr that's what I've had surgery for on my right foot...twice...combined with peroneal tendon dislocations....twice! Left foot is up next once I'm full weight bearing and back in shoes on the right foot. and the rehab process has been brutal!
I just realized my auto correct on my phone is stupid...and kept posting cause I wasn't sure if it was posting. ..sorry... I'm new to having a smart phone ....lol