By Claudia on Friday, November 10, 2000 - 10:13 pm:

Hello everyone, my name is Claudia, I just found out after many years of searching that I have EDS type 3. The only thing I am very happy about is that I finally know what is wrong with me. I have heard a whole slew of ridiculous explanations from uneducated doctors. Here are a few misdiagnosis I have had. Mono, Depression, hypochondria, Osteoarthritis, rhumatory arthritis, non specific joint instability, and one doctor thought I was a junkie trying to get pain pills. I even saw two orthopedic surgeons who looked very confused and simply said I had the loosest joints they had ever seen, and there was nothing they could do. I cried. I finally heard of eds in a body manipulations magazine that featured an article on contortionists. They mentioned eds and a few symptoms. Something clicked. I went to my new doctor who is still a resident. He was very excited and begag looking up everything he knew about eds. He brought in a student who went to work as well. They both concluded after looking at all my symptoms that I did indeed have eds. I even have a spheroid on my shin. I am seeing a geneticist next month. oh, sorry for the lack of paragraphs, I'm kinda tired. My sister is going with me to the geneticist since she has all the same symptoms I do. Basically what I am looking for is to talk to other people who have this. My sister and I are the only people I know who have this, besides the people I have seen on web sites. I am looking for a chat room of some kind to actually talk to people. oh, I am a 25 yr old female living in portland OR. Thank you to anyone who can talk to me about this, and how to deal with the depression I get over this. I cry myself to sleep sometimes from the pain. And I don't know how much longer I can handle the pain at work. Please let me know if there is anyone willing to talk to me. Thank you

By Rob on Saturday, November 11, 2000 - 06:28 am:

Hello Claudia:
I just read your message and I also have Eds Type III ( Hypermobility ), I'm a 40 year old male that was always double jointed and thought as a child that it was neat or cool to be able to do all of the weird things that the other kids couldn't do with their joints. Now I'm faced with the plain facts that I can't work due in part of the EDS, I have Inflamatory Arth in my left wrist, Bursitus in both hips and knees.

I am in the process of applying for Social Security Disability, and have applied for disability coverage through my employer who has and will continue to give me hell, thinking that my illness isn't valid because I look healthy.

I would be more than happy to help in any way that I can and to also to just talk, please feel free to contact my via my e-mail address.
Daddio560@aol.com

As long as your physicians give you the right medicaions you should be able to handle the pain,
yet it's up to you to manage your life and the pain the best way you can, and I know from experience that it won't be easy to do, because I hurt and ache every single second of the day.

Take care and hope to hear from you soon.

By Sal on Monday, November 18, 2002 - 11:21 pm:

Hi, can someone explain to me the different levels of hypermobility and eds? my physio has got hypermobility and she thinks i either have extreme hypermobility or eds? what is the difference between eds and hypermobility?? Soz about all the questions

thanks

By Ian on Tuesday, November 19, 2002 - 02:22 pm:

If the tendons and ligaments surrounding joints allow a wider range of motion than is usual a person is hyper mobile and may be called “double jointed” by friends.

There are many people with hyper mobile joints and they go through life like this without any problems. But if the hyper mobile joints cause problems such as frequent pain or joint dislocation the person may have Hyper Mobility Syndrome (HMS). Living with HMS can be a major problem in terms of pain and mobility problems.

However, if the hyper mobile person has more than joint problems they may have Ehlers Danlos Syndrome (EDS). Various forms of EDS have hyper mobility as a characteristic but will also have skin stretch or other major problems that can even be life threatening.

To a person who has hyper mobile joints and great pain, or even unintentional dislocations, the name given to their problem (EDS or HMS) will be of little interest to them as they seek a cure to their joint problems.

Ian

By Shazinoz on Tuesday, November 19, 2002 - 03:35 pm:

I am described as having "Gross Hypermobility" by some it just means my hypermobility is "bad" Some people are only hypermoile in say there knees or maybe fingers others are hypermobile in small joints, others only in large and some of us in all joints small and large, also the degree of "flexability" changes, on the beighton scale some may scoe a 2 or a 4 and others a 7 or 9 out of 9 plus on the tests like degress of hyperextension in knees instead of the stated 10 degrees some may go 20 or more, and same with like fingers past 90 degrees some may be able to put fingers on the backs of their palsm. but we are all Hypermobile even the ones with just say finger hypermobility and if we all have HMS or EDS etc then we all also suffer, the degree of flexibility may not (and as far as I know doesn't) mean you will suffer more from other symptoms such as PAin, dislocations etc)

By Sal on Wednesday, November 20, 2002 - 11:30 pm:

thanks guys, your legends .... i think i musn't have EDS coz my skin is really not stretchy, its really firm, but yeah the whole hypermobile thing is me definately!!! I was learning about all this stuff in biology at skool, like where we get all our genes from and it was pretty cool. I used to look at having hypermobility as a curse ... but when u think about it we are actually pretty lucky, my physio strapped on tape to my shoulders to give me a normal range of motion and i felt actually felt really restricted!! Anyways i found a website on contortion which actually said that contortion could help decrease the pain and stuff in hypermobility and EDS and so i got up early, and did some of the exercises and my body felt really really good!! I have had basically no pain all day so if anyone wants to try some of these basic stretches i'll try to find the email for you
gotta blaze
bubye

By Ian on Thursday, November 21, 2002 - 11:03 am:

Sal

If the tendons and ligaments surrounding joints allow a wider range of motion than is usual a person is hyper mobile and may be called “double jointed” by friends. There are many people with hyper mobile joints and they go through life like this without any problems at all but it is essential to maintain very good muscle tone to avoid uncontrolled dislocations.

I can give you much information so mail me at mercedes_nz@yahoo.com

By Ian on Saturday, November 23, 2002 - 01:46 am:

Sal,

I have had more than 40 years experience coaching contortionists so I can discuss exercising with you at an expert level. The page you found was likely http://www.hgc.mcmail.com/

Regards, Ian (mercedes_nz@yahoo.com)

By Olga on Sunday, November 24, 2002 - 10:49 am:

Sal

My Mom has hyper mobility and I have had this extreme hyper mobility passed down to me but from an early age I attended acrobatic training and have continued to stay very fit. I have excellent muscle control with this flexibility and no problems. I think you are doing the right thing.