EDS Questions

[222Maisie]

Hi,

Newly diagnosed after 20 yeras of painful subluxations and dislocations. Nobody believed me. Met an Internist who diagnosed me. Don't see him again for 3 weeks. Going crazy wanting more info. Doctors and P.T.s (my current one included) don't know about EDS. Thank you for your information. I have wathched some of the other videos so I joined YouTube so I could comment. I want to know if you can wear a shoe over that ankle boot from another video? Best to you. 222Maisie

[rogneid]

I was not diagnosed until age 50. When younger I could do all the "parlor tricks" as my grandmother called them. However by the time I was in my 20's the extreme flexablilty for small joint decreased and I started to get killer large joint dislocations (SI joint, knees, shoulder, jaw, and a few of the smaller ones. I've dislocated things rolling over in bed, walking across the living room. How many with HM are like this? Are there any numbers?

[369goodtimes]

I just received my EDS diagnosis and I also have a transgendered sibling so I am really able to relate to your stuff you are sharing. I want to know how to get my doctor to take me seriously and what is all of this pain from?? My knees and fingers and wrists and what is it and why did it take 46 years to get someone to find this??

[ufo8mykat]

Hi there! To gain agreement with your doctor takes a few things, in my opinion. 1. Learn your doctor's language, learn how to say what hurts in anatomical terms, and by what anatomical movements. 2. Find a doctor you can have that discussion with. Even if you disagree with one another, you should be able to establish that without feeling like garbage. Same goes with good friends, no? :) You could also hear your doc out, see if you can establish a baseline. It's rare, it takes a while.

[lilsavion]

I def understand how you feel. I am a dancer who has to deal with the pain, and not being able to build muscle as much as I want. it's sooooo frustrating, because my teachers don't understand

[hornyrabbit07]

Hi there, I want to know more about different braces I have seen yours and think they look cool and glade that they help you. I have been trying to get help here in Australia to help me but you know how that goes... thank you for your videos they mean so much to me

Thanks Keyra

[ufo8mykat]

@hornyrabbit07 Hi Keyra, I hope I haven't missed this question, if so, please accept my apology. Thank you for your comment! Do you have any specific questions about braces?

[drooooopy]

Two Lesser known/Thought of things about Ehlers Danlos:

Some people with Ehlers Danlos have serious coordination problems as part of it. More than "Clomsy" or "bad gait" or "bad balance' this can seriously impact a person. I have a combination of issues which contribrite to this (I have bran damage, Autism, etc) but Ehlers Danlos contributes too.

We can have very bad posture due to a bad habit of standing with our flat feet and knees buckled in etc and this can cause various other problems

[drooooopy]

tips: protect your eyes! Even from clipping your nails and having one land on your eye (I am serious)

Don't use your hyper-mobility to compensate for being too short (no chucking shoulders out of place and 'neat feats' to reach for things on top shelves, etc) you WILL pay for this later if you do. Instead accept if you are short, know yoru limits, have people put things lower, ask for help instead..

[drooooopy]

nm the music comment (I had some loud Japanese music coming from some unknown place on my computer but its quit now)

Ehlers Danlos can blind you (its happened to me), I sustained a minor eye injury, my eye didn't heal, responded by making a ton of floaters which are stuck due to my body's randomly making and putting colleen in my eyeball fluid (so its thick now) and they can't operate due to my poor healing prognosis.

[drooooopy]

I have Ehlers Danlos.

Unfortunately I can't hear you over the loud music in your videos

[ufo8mykat]

Hiya,

There is only music in the introduction and exit; are you sure you don't have the video open twice, or a music player in the background?

[drooooopy]

Sorry about that, yes that was some weird thing on my computer (I still have no idea where it was coming from).

[JustsAngel]

thank you for all ur videos they make me feel less alone because i was diagnosed with EDS at the age of 3 & never have i met any1 with it i have a type that my skin tares real easy & some joint problems & major pain envolvement so ty

[ufo8mykat]

I think doctors generally don't get a lot of exposure to EDS, they have more likely heard of Marfan syndrome. To find a good doctor, just keep going until you find one. A doctor who would nay-say a condition would not see me again.

I have orthotics myself, specifically, hinged Breg PTOs for my knees, among others.  But do your homework about orthotics and atrophy -- they go hand-in-hand.

Disclaimer, of course, I'm not a doctor, check with yours. :)

Is that helpful?

Take care,

Sama

[doomedsushi]

This is wonderful Sama. I've recently gotten my diagnosis, but within the past 6-8 months I've been doing a lot of research. The one thing I'm having trouble with is the consequences of EDS later in life. I find the arthritis answer a lot, but that's not really all that helpful. Severity, age, etc. would be MUCH appreciated! I'd like to know what to expect/prepare for. Once again, wonderful videos-probably one of the most helpful resources I've found! :)

Christina

[ufo8mykat]

Hi Christina,

Thank you! With EDS, splinting and pain management are the general prognosis, With age, joints usually become tighter. But with EDS, I've just heard of them getting weaker. Maybe your PT/OT can discuss atrophy and maintaining muscle tone long-term?

Be well,

Sama

[ufo8mykat]

Hi Christina,

In case I haven't responded (I think I did...but!), thank you very much for your encouragement. I heard a lot of arthritis conjectures and got my joints tugged by a lot of people before i had a dx that explained the joint pain. Crazy-crazy, isn't it? Thanks again!

[jaykay1053]

I think what you're doing is great. Thanks for presenting such a great opportunity for fellow EDSers.

All the best, EDSer III/IV

[ufo8mykat]

I can't tell you how much your encouragement means to me. Thank you! I very much want to make a difference and remove the sense of hopelessness that so easily devastates EDSers and makes them afraid of living.

[ufarted]

i also want to say keep up the good work! :)

i was finally dx'd with H-EDS last october. i have just started to get together a folder for all my doctor notes and to get lots of info on eds incase i come across any disbelievers!

i wanted to ask though, if you know of any good articles could you please send me the link to them or if need be msg me so i can give you my email?

thanks, take care xxx

[ufo8mykat]

Hi, thank you so much! It makes a big difference to hear these encouraging words.

I can certainly send you some articles. Send me a private message and I'll get you some resources.

Be well,

-Sama

[rigbyfin]

i would reccomend you check out the yahoo group CEDA. it is a very informative and supprtive group of edsers

[ReineDeLaSeine14]

Giiiirl! Keep up the great work! I have a purple folder i let me docs borrow if they want to :)

[ufo8mykat]

Thank you so much for your comment! I'm glad to know I'm not alone. For as many views as my works get, I'm surprised more people aren't collaborating. The white one is for PTs, the tan one for my info and important documents (ECG results, doc reports, etc.) and the blue is a small chunk of scientific and medical research.

Thank you truly for your encouragement. :) I'd almost given up on making videos!

-Sama