Eds

[HopeSprings]

Do you have to be hyperflexible to have EDS -- if you aren't, is it possible to still have it?

[nmorgen]

Do you have to be hyperflexible to have EDS -- if you aren't, is it possible to still have it?

You can have the vascular EDs without hypermobility. I'm not sure about the other types of Eds. You really don't want the vascular Eds though. Very poor prognosis.

[sugartwin]

Well, the short answer is no. There are forms that don't require much flexibility like nmorgen said.

And then, you can be hyperflexible without knowing it. I didn't think that I was all that flexible until I was formally and thoroughly tested, and found to be a 7/9 on the Beighton Scale (which measures hypermobility.)

You can also lose hypermobility as time goes on but still have EDS, if you were hypermobile when you were younger.

I don't think I'm explaining this very well. If you have other symptoms suggestive of EDS, it's worth getting evaluated by a geneticist even if you don't think of yourself of hyperflexible. Let a doctor decide.

[HopeSprings]

I just keep seeing more and more people here diagnosed with EDS and wondered if I could have it. I don't really understand what it is, what the symptoms are? besides hypermobility so I am not sure I could justify going to a Dr. and asking to be checked for it without having that symptom. I am always interested in getting to the "root cause" of my POTS. I keep seeing three things here on the site-- EDS, Mitochondrial Disease and Mast Cell disorder -- but can I go to a Dr. and say I have POTS -- check me for these other things because there seems to be a relationship? And what type of Dr. do you go to for these things. The Dr's I have seen don't seem to know much about much!

[sugartwin]

Read a little more about each condition and see if anything pops out at you. Narrow it down. Look for something that doesn't seem to relate to your POTS exactly. For me, I had excruciating joint pain that my doctors couldn't explain except to tell me I was drug-seeking or that I needed a psychiatrist. Because I was told this by a doctor who specialized in POTS, I knew it wasn't a typical POTS symptom or she would have seen it before. I knew there had to be something else. Of course, the best thing to do is find a doctor who is interested in discovering POTS causes in their patients. But these are few and far between.

People are born with EDS, so think back to your childhood. Lots of weird injuries? Clumsiness? Growing pains that were really painful? Stuff that seemed just plain weird?

It would be a rare doctor who agrees to rule out EDS, MCAD and mito. You probably have to narrow it down yourself some.

[issie]

Also, in my case, as a youngster growing - my eyes got really bad FAST. I was having to change my glasses every few months. They put me into hard contacts to hold the shape of my eye - like a girdle so the nearsightedness wouldn't increase so fast. Also, had allot of sprained ankles, stove up fingers from playing. Was the clumsey kid that got picked last for sports. I feel like I had POTS at that time too and my endurance just wasn't there either. Also, if you sleep wrong, you hurt all over. I have to make sure I have my back and neck in perfect alignment or the next morning things have gone out of place and there are real bad muscle spasams pulling the vertabrae out of alignment. I have to support my knees or my knee caps dislocate and I hyper extend my knees. But, I don't have real elastic skin. I have the soft smooth skin but not real pulley or elastic. I have real issues with my blood vessels. I had varicose veins in my legs removed when I was only 26 years old. They were huge and really painful. I have to wear compression garments to hold myself together. You can slightly touch me and I'm bruised. This is a connective tissue disorder. It has to do with the collagen in the body. Vitamin C is supposed to help as is collagen supplementation. I'm doing the C, but haven't gotten the collegan to try yet. Anyone, else out there tried that?

[EarthMother]

I didn't think twice about EDS because I don't have the "classic" hypermobility joints. That is I don't score very high on the brighton scale. On the other hand, I can put my foot behind my head, all three of my births were under two hours labor, my mother has fibro etc. etc. ...

Then a couple months back my youngest came home and said some version of "Hey Mom can you do this?" And then proceeded to do some "strange" twisty thing with her leg. Long story short I asked each of my three children to do the Brighton test and they are all classic hypermobile. I then did the poor man's tilt table and EACH OF THEM would qualify for POTS -- their pulse was up more than 30 BPM from supine to standing. My girls were each over 120.

I brought an article (or two) to my last Doctor visit ... plus some photos of the kids performing the brighen postures. I showed him the graphs for heart rate on standing and supine and he said it was pretty clear that for me the POTS looks to be genetic and that I did pass it along to each of my kids. At this time each of them are very healthy and have no "issues" with the POTS or EDS. So we are doing the normal "preventative" measures (salt, hydration ... and my eldest is considering compression for her teaching career) and we are taking a wait and see approach.

Good luck on your healing journey.

[toddm1960]

EM I'm crossing my fingers your 3 children are in the 80% group of teens that grow right out of this. It's a good sign they aren't held back by any of the symptoms.