Looking for others with a EDS Dx-

[selmaS]

Hi....I am looking for others that may share the Dx of EDS- Ehlers Danlos Syndrome.

I was Dx with this last week and was wondering what type of issues u have as a result and the treatments u may hve had.

I also have chiari malformation, cervical spinal stinosis,DDD,tethered cord,cranial instability, mild scoliosis and EDS.
And not sure if it's related to ne of the above, but I also have Hashimoto's thyroisitis and a hiatal hernia with acid reflux.
I believe I got them all....oh yeah fibromyalgia.

[selmaS]

HI...may I ask r those of u with the fainting issues bcuz u have POTS or some other condition....it isn't just EDS ??? I am confused as to the issues u r talking about here.

I have chiari, tethered cord and EDS.....I have had drop attacks....diff from fainting...but u fall regardless.

I am confused I hope someone can explain

"selma"

[AireScottie]

Some forms of EDS can be confirmed with biopsy or gene testing, but not all forms.  The standard for diagnosis is usually the Beighton Scale, where your doctor looks at how overflexible certain joints are in your body.  There are nine points they look at.  The easiest to describe without pictures are: if you can lean forward and touch your palms to the floor while keeping your legs straight (1), if your elbows bend backward (2&3), if your knees bend backward (4&5), if you let your hand flop forward and you can use your other hand to push your thumb all the way down to the inside of your arm (6&7).  Okay, that last one is hard to describe.  8 & 9 have to do with your pinky, but I don't remember what you have to do.  There are some good links in the health pages in the upper right of this forum

[khearts2]

Is there a specific test for EDS?

[halbashes]

Excellent point Heiferly!  I'm really happy you didn't drown.

This too isn't exactly on-topic with the EDS thread, but I wanted to suggest supplemental oxygen as a possible option for showers.  I've found it to be somewhat helpful in keeping conscious.  You maybe somewhat less likely to drown in the shower, but I've gotten a concussion in the shower before.  Please be careful with shower fainting episodes as well AireScottie.

[AireScottie]

Good point.  I forgot to mention that.  My PT won't let me near a pool because the increased pressure feels great while I'm in, but when I get out, the rapid decrease in pressure makes me faint every time.  And I love to swim!  I too have passed out from hot water, thankfully a shower.

[Heiferly]

Just wanted to post a quick note on swimming for those who have heat intolerance and/or problems vasoconstricting appropriately (i.e., blood pooling).  Swimming or soaking in water that is heated to higher temperatures is not advisable for these conditions, for obvious reasons with heat intolerance, and because heat causes vasodilation (expansion of the blood vessels).  Ideally, water is warm enough to be comfortable, but nowhere near as warm as a hot bath or a jacuzzi.  (That's right, my hot tub days are over.  Sigh.)

I personally have fainted in a hot bath before and nearly drowned, so I know firsthand just how dangerous this can be.  On the other hand, I do quite well with swimming as a form of exercise if the water temperature isn't too high.  Just be cautious and please please please always swim where there is a lifeguard or you at least have someone with you!