Classic Ehlers-Danlos

Dr. Diana describes the Classic form of Ehlers-Danlos (EDS) and how to differentiate it from the Hypermobility type.

Category:

People & Blogs

Tags:

• Ehlers-Danlos
• EDS
• POTS
• dysautonomia
• chronic fatigue
• fibromyalgia
• multiple sclerosis
• CCSVI

[2136cass]

Wow, this is GREAT! I never thought I had EDS bc my fingers are not hypermobile, but my knees and elbows hyper-extend & I can put my palms on the floor. Growing up, I always had "knee issues" where my patella would constantly slip out of place. One time while bending backwards, my femur popped out from my pelvis. I constantly would have twisted ankles. My incisions heal very slowly & I have stretchy skin. I always wondered about the bumps on my elbows too. So very interesting...

[PrettyIll1]

@2136cass I'm so glad this was helpful for you! I hope it saved you many unnecessary doctor office visits. :)

Big hug,

Dr. Diana

[PrettyIll1]

Great to know after the fact, right? ;)

BEEN THERE!

Thanks, ricagilmore

[PrettyIll1]

Hi Tracy,

Most people (not all) with the really rough pain have the hypermobille form, not classic. There are of course exceptions both ways, but I am 54 and have little or no pain. My mom is 77 and has no pain. Cool? Are you having a lot of dislocations or subluxations? I subluxate like crazy, but have learned how to put things back in place (basically). I've never had surgery for a joint, and would be hesitant to do so because I don't heal well. So, expect the best, OK? And thank you, Sweetie.

[PrettyIll1]

Well, I guess that's a good start! Maybe you can get that monkey off of your back, at least! Were these videos any help for you? Diagnosing classic and hypermobility type is a bit of an art! Hopefully they'll do a skin biopsy and send it to the connective tissue lab in N. Caroline (I think that's where it is). That will help!

Fingers crossed. Big hug...

[PrettyIll1]

Hi ndpioneers,

A geneticist who is very comfortable with EDS is your best shot. (I'd ask them before making the appt). Some are only good with the vascular form...

Good luck!! :)

[ricagilmore]

I am so glad you recommend to leave the stitches in twice as long. I got a hole that could fit a half dollar a week after the stitches were removed at normal time. It is so ugly and was really gross with cleaning. The doctors could not explain why I had a huge hole in the middle of my "what appeared healed" incision.

[tracy2850]

Only my shoulder dislocates as of now...should I expect more joints to start poping out as i get older? For treating dislocations, are there options other than surgery and pain meds? I have heard of people with EDS having extreme, chronic pain...my pain doesn't seem THAT bad. Should i expect it to get worse w/ age? How do I have you (Dr. Diana) become my doctor because you are one of the only ones I have seen who actually know what they're talking about? :)

[tracy2850]

I am in my mid 20s and have eds classic type. do you know of any doctors in michigan who know about eds and shoulder dislocations? I've already lost a job because of my eds and am looking for another but probably wont get past the medical screening. How can i get health insurance if no companies who give it will hire me b/c of eds? Does medicare cover people with EDS? what are recommended occupations for people with EDS? Will my EDS get worse with age?

[ndpioneers]

We found the only geneticist in southeast Virginia is in Richmond at MCV. The first appointment they have available is 3 months away. Four of us in my family now have an appointment for the same day there. They did say the easiest to diagnose is the vascular form. Now I'm a little nervous that they may not be good if we are not vascular. But actually the evidence points toward vascular for us.

Thank you,

Deb