My name is Courtney. I was officially diagnosed 3 weeks ago and received result on my blood-work that showed gene mutation of Col5A1 last week. I've been suspicious though for about 3 years now of having this. Seems multiple members of my family look like they have it too but no dx yet.

Hey, I'm Mary. I used to come here alot for help but haven't visited in some time...depression. I have EDS hypermobility. Even though I knew it was in my family, and my elder cousins told me I had it...I didn't give it much attention until my shoulder subluxed ripping a rotator cuff in the process. Then, although I was used to "leg aches" ever since childhood, my whole body started going to heck when I hit my 50's.... or, they hit me. So, here I am, depressed, unable to work, and trying to figure out who I am...Man, I was totally unprepared for the degree of pain...and its so hard to describe unless its the neck all knotted up because the muscles are doing the work of the tendons and ligaments...Naturally they kink up.

Good luck everyone, Mary

Hi, I'm Emma. I was diagnosed with HEDS last week, by a rheumatologist who specialises in EDS. I'm overwhelmed, but also relieved that I know what's causing the pain and other troublesome symptoms. I'm 31, and just wish it had been caught sooner, before I spent years wrecking my joints. Sigh.

I'm so excited to find this forum, and hope to get to know the people here.

Hello all. My name is Azure, I am 24, with Ehlers-Danlos Syndrome Hypermobility. Chronic pain began at 10, along with other mysterious symptoms, and after several doctors I was finally diagnosed at 14. I've been unable to work for about 3 or 4 years now and getting worse all the time. I've also been unable to receive much medical care and don't have much in the way of painkillers (not a fan of Tramadol and the dr won't prescribe any stronger), or nearly enough medical records to make me feel remotely prepared for my Disability hearing coming up on July 13.

I'm dropping by here because so many things are hard to find even online with EDS, the weird quirks that pop up that you're not sure whether it's normal or not. I'm also finding a growing desire to develop better pain management in my life and research things like mobility aids. I doubt I'll be a regular around here, as I'm totally the anti-social cripple and I'm not always up to doing a lot on the computer. I wanted to introduce myself and pop up from time to time though.

Hi Everyone,

It's been a long time since I've been here. There's been a lot going on with me. I am now in a wheelchair full-time. I just got my new power chair (Corpus C300), it's really fantastic, but it also represents a big change in my life. Not quite a milestone, but similar. The permanence of my condition is really getting to me. My autonomic nervous system is failing, I'm having full Autonomic Testing done on Thursday - Tilt Table Test, Sweat Test, Muscle and Skin Biopsy, and a few others, to find out exactly what's going on with my nervous system and the severity. Hopefully we will get some answers and will be able to receive some sort of treatment for it. I'm not able to exercise, not even very, VERY mild yoga stretching and I've been cut off from PT until my heart rate gets under control. I've gained about 15lbs and am not really happy about it. There's so much going on and it's really hard to deal with. The people that have been my closest friends have, in a way, "forgotten" about me. Perhaps they don't know what to say or do... I don't know. All I know is that I need my friends and support system more than ever now, and those few that have always been my closest don't want anything to do with me, it feels. Sigh.

You can add me to your list. Hi I'm Jessi It took me until I was 25 to be diagnosed with EDS classical type. I also have fibromyalgia, hypoglycemia & arthritis. I'm 44 now & live with my mom (who doesn't have EDS). I think sometimes she forgets I have EDS. She's 74 & only wants to sit & read. I am always tired, I'm the only one who does any work (house & yard).
She says help cost money. I guess it's o.k. to wear my body down.

Hi everyone. My name's Katie. I am 22 years young and I have Classic EDS. I was diagnosed with POTS in 2006, when I was 18, which then led to the diagnosed of EDS.

I've had symptoms of EDS and POTS as far back as I can remember. Everything got worse during my junior year of high school. I was lucky that I was diagnosed with two years.

I also was born with a congenital heart defect called Transposition of the Great Vessels. I had 4 corrective open hearts as an infant. I have a dilated aortic root and aortic regurgitation, but I was recently told my my cardiologist that, since it hasn't grown in a few years, he no longer believes that I will need to have my aortic root replaced, thankfully. No one has any idea if my heart defects and Ehlers Danlos have anything to do with one another. Or if the dilatation is cased by my EDS or my congenital heart issues.

Feel free to PM, IM, or email me! I would absolutely love to chat with you guys. I can't wait to get to know you all better.

AIM-katertot6066

I hope you all are having a fantastic day!

Hi Kait! The aortic root dilation is definitely an EDS thing, but when it's stable it tends to stay that way. I know many of us have had echos to see if they're there.

I'm gonna go ahead and post on here even though the doctor gave me the diagnosis of Hympermobilty Syndrome. There are many doctors who feel that HMS and EDS 3 are the same.

My name is Deanna and I am 30 yrs old. I was diagnosed in 2006. I am sorry that all of you have to suffer from EDS but I am happy to see so many people who understand what I am going through. =)

Hi, I was finally diagnosed with EDS Hypermobile type last month, after almost 2 years of severe, chronic pain from damaged Achilles (both feet), hands, hip and now arms. My other doctors gave up on me and said my emotional state was affecting my physical health, but I went to see Dr Axon in Welwyn UK, and he diagnosed me.

Since then I've had a week of being cheerful, followed by a week of being totally bummed out that I had an incurable condition (seems my Achilles are knackered and I have nerve damage), followed by a gradual feeling that I need to take control of this situation.

Apart from Dr Axon, all my other doctors and healthcarers have been a bit hopeless or absent from proceeding. Some don't believe in it (can't figure out that attitude at all), or just shake their heads and smile and say "I don't think so". I presume this is because I don't meet their stereotype of being a contortionist or being able to dislocate my limbs on command. But as Dr Axon said to me, it's kind of over to me now - with no cure, managing the condition is my job. They can give me painkillers or exercises, but I'm the one who knows how much pain I'm in and how much exercise I can tolerate.

I just wish there was more emotional support as it can feel pretty lonely with a rare condition no one's heard of.

Just recently diagnosed with CEDS and traits of hypermobility...I am 24, I have gone progressively downhill since May of this year...scared of what will happen next. So many problems for so many years are finally making sense. I'm not crazy or a hypocondriac anymore...

List of some issues:
Random allergic reactions to things previously not allergic to
Thyroid problems (tumors and nodules)
Early onset arthritis
Dry skin
Hardened nodules under skin
Dislocation/Subluxation of joints (severity varied)
Low Blood Pressure
Low Body Temperature - mine averages in the 96 or 97, I used to go to the school nurse and say I had a temperature, it would read 99.0 and they would say I was fine...for the normal person, that temp would be around 102.
Anxiety
ADD - for those of you who know me, you probably laughed because of how true that one is
Excessive thirst
Hyper-mobile joints - I could challenge Gumby any day
Extreme sensitivity to heat/cold
Poor wound healing
Abnormal wound healing
Stomach problems (chronic acid reflux)
Scoliosis
and the list could go on...thats just the few I could think of right now...

This board has been a great help, so many doctors don't know what we deal with or that a symptom we have is what 1000's of other EDS'rs deal with every day.

I started a blog to help me cope, I've always been extremely active and this is driving me crazy to have to sit and do small baby exercises...I want to be able to help others cope and offer advice. I am ironically in medical sales for bracing. I have a guy with EDS order 15+ of our braces last week...that is the only other person in the world I have met besides cyber world. I am on the verge of having to quit my medical sales job because I can't do it anymore with the driving long distances. The blog is very informative about what I do with bracing (I could be a walking advertisement) and more importantly my journey with EDS.

http://feeds.feedburner.com/Ehlers-danlosMyJourneyToFindAnAnswerToQuestionsIveHadMyWholeLife