Ehlers-danlos Syndrome (eds?

[icesktr189]

I see that most of you have some type of viral infection or trauma that caused your POTS or you were just born with it. Mine just came on.. no flu/mono or anything. Just decided one day to. So i was looking into it and i found EDS. I do have extremely flexible hands and feets. My fingers can go all the way back and touch the back of my hand. I always just thought this was something cool to impress my friends with i have the hitchhikers thumb and i can bend my legs into pretty gross angles. How where you diagnosed with EDS? Is there anything that you can do for EDS or if i get diagnosed with it will it just be a diagnosis and really no actions i can take? thank you tons

[Katja]

You can't treat the underlying cause, but you can treat the symptoms. I've started doing physical therapy, with a PT familiar with EDS, to stabilize some of my joints and help prevent further injuries. Depending on the type you have, it may have implications for pregnancy, or there may be other health risks you'll have to watch out for. If you end up having serious problems with some of your joints, it may also have implications for how those problems should (or shouldn't) be treated.

To get a diagnosis, most would suggest finding a doctor who specializes in connective tissue disorders. I was diagnosed by a geneticist - I also saw a rheumatologist later, who was familiar with it, but admitted she'd seen about 10 cases in her lifetime. Some specialists also think that the cause of your POTS may help predict which treatments would work best for you. I have both EDS (probable, since it is a clinical dx) and autonomic neuropathy (confirmed), so I may have multiple causes.

[icesktr189]

do you experience joint pain? i do get it occasionally but its not a consistent thing..

i do however have an open spine on the bottom of my back. its on the inside so they never did anything about it. i used to have pretty bad muscle spasms in my back but i have muscle relaxers for that.

[arizona girl]

Hey dani

I'm in the chandler area and am waiting on test results to see if I have EDS Vascular. It's just a blood draw. I saw a local geneticist in phoenix named Theresa Grebe, MD.

Don't know what type of insurance you have, you may need a referral to go to one. A rheumatologist may also be able to refer you.

I'm not that bendy, but my colon ruptured and I have family members who are hypermobile. You don't have to be bendy with the vascular type. Have you had any trouble with your veins and arteries and or digestive track? Most people who are bendy have the main one hypermobile type. Hope this helps, I'd go check it out if I was hypermobile.

[icesktr189]

see i am bendy but so is my mom. but she has the vascular one.. i dont know how it works but she has had her colon, gallbladder and ovaries removed. all of her organs seem to be giving out.. now its her bladder she is having trouble with and they think she has crohns. so i am confused but if i do have the vascular kind atleast i would know what cause my POTS . i hope you get the answers you want! and thanks tons

[arizona girl]

see i am bendy but so is my mom. but she has the vascular one.. i dont know how it works but she has had her colon, gallbladder and ovaries removed. all of her organs seem to be giving out.. now its her bladder she is having trouble with and they think she has crohns. so i am confused but if i do have the vascular kind atleast i would know what cause my POTS . i hope you get the answers you want! and thanks tons

If your mom has the vascular one then you need to be tested if you haven't already. The vascular one can cause sudden death and needs to be watched closely. It also is very genetic and passed on to at least 50% of offspring. So your odds of having it are very high, if that is what she has. There can also be some crossover between the hypermobile types and vascular. I hope you go and rule this in or out, and you should do it soon. Not dealing with this one will only make it worse, there is so much they can do with prevention. I sure hope you don't have it. I hope I don't have it, but if I do then I can put a game plan together to deal with it.

[flop]

I have hypermobile EDS - the most common type. There isn't a cure for EDS but with a diagnosis and the help of the right people it can be managed. I was diagnosed by a rheumatologist. I have recently seen an occupational therapist who has helped with things like splints for acute pain, night-time wrist splints, gadgets for reducing stress on my joints (like opening tins and jars) and mostly advice on ways to do everyday tasks whilst minimising the risk to my joints. Next week i am seeing a physio and will hopefully learn how to best stay flexible without getting injured (injuries usually lead to stiffness) and help to stabilize my joints.

Flop

[BelieverEM]

I have Ehlers-Danlos Syndrome, classical type. You are generally diagnosed by a geneticist.

Symptoms of EDS vary, but often include:

joint hypermobility (loose/unstable joints which are prone to frequent dislocations and/or subluxations); joint pain; hyperextensible joints (they move beyond the joint's normal range); early onset of osteoarthritis; soft velvet-like skin; variable skin hyper-extensibility; fragile skin that tears or bruises easily (bruising may be severe); severe scarring; slow and poor wound healing; chronic, early onset, debilitating musculoskeletal pain; arterial/intestinal/uterine fragility or rupture...

If you visit the Ehlers-Danlos National Foundation at ednf.org (register for free), you can access message boards like this one, and find doctors in your area.

Please email me if you'd like further information or guidance.

Good luck!

Erin