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All You With Eds??

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Hey there- since there are so many of us with EDS, I was hoping it might be okay to ask an EDS related question here.

I haven't joined the EDNF yet, but I will once I know for sure what kind I have. Right now they're assuming it's hypermobility type, but I'm seeing the genetics team in 10 days to make sure. Do most of you have HEDS, and is it the only one or the most likely to cause POTS?

SO here's my real question- the rheumatologist is telling me that my joint pain is related to the EDS, which makes sense with loose joints I suppose, but in addition to the pain, I've always had very 'snappy' tendons, so most of my joints 'pop' all the time... every time I bend my knees, I can feel a tendon popping over something, and same with my hips.. is this normal in the general population? It doesn't feel like it should be. But I wouldn't know if it's EDS related or separate, and if it WERE EDS related, why??? is the problem not the tendon itself but rather a bone trying to dislocate and tendon keeping it in place or something?

Any ideas? Sorry- I'm trying to do research, but I'm still rather clueless about the whole thing.


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I have EDS, too - and as a result I dislocated my shoulder 3.5 years ago and had surgery and then was in and out of PT for yeaaars. Of course, that was before they figured out that I HAD POTS or EDS.

I also have extremely "snappy" tendons - I creak and pop so much when I stand up or move that my mom started calling me her little old lady!

I'm not sure WHY this happens, but my doc said that it is related to the EDS and the messed up elasticity or something... I'm horrible with understanding these technical explanations, lol.

Good luck! Let me know how you're doing!


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Thanks- I asked the physical therapist about it today, and she said, "Oh yeah, that goes along with the hypermobile joints." :blink:

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To try to answer some of your questions, I can only tell you some of what I've been told by a doc at Hopkins, genetics at chop & NIH.

In EDS everything is more laxed than in normal people so yes, having EDS can affect your blood pressure and heart rate (to pull your bp up to normal) your veins are laxed which causes blood pooling.

Also in EDS about over half I believe experience painful joints about 54% take some sort of narcotic medications to deal with the pain along with numerous and various other treatments to help.

It is said that the hyper mobile type of EDS can be the most debilitating due to the painful joints. Check on the EDNF site for a better explanation of the different types of EDS and the various symptoms it may cause. Although the symptoms are not locked into a certain type, people of one type can experience symptoms of another type.

EDS can cause this tendon thing as well as many other symptoms and dislocations/sublux.

The pain in the joints can be quite excruciating that not much seems to touch but there are things you can try to lessen the pain so you can live a more productive life. It?s different for everyone. There are milder cases and more severe cases as well.

For your why, the best way I know how to explain it is, that your body is made up of collagen and it is everywhere and EDS people have faulty collagen so the structure or foundation is faulty so things do not hold together properly.


best wishes

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