Anyone with Ehlers-Danlos?

I have Type 3, Hypermobility Form of Ehlers-Danlos and I'm 32. I have a 15MO daughter and am currently taking 50mg Amitryptiline everyday and 3/325 Endocet as needed (but usually 1x daily recently). I'd love to have some people to compare to. Sounds weird huh? I'm nursing so my medication choices are limited and while pregnant, had more pain and more joint laxity than usual. I'm planning on getting pregnant again in December and I'm a little nervous about weight gain as I'm not really able to exercise. Anyway, thanks for listening and I look forward to some conversation. :)

Hello OhNoMongo and Loosiegoosie,

I am Lindaloo and I don't have ED but I am slightly familiar with it.  As a retired RN, I remember learning about it through my training, but I have to admit, I've never met anyone with it.

I am glad you two ladies have connected here.  I hope you two can give support to one another.  I have been on this forum since 2006 and I can tell you that it is a great place for finding support and encountering kind people.

I can only imagine what you go through with this disease.  It must be very tough.  I fight my fibromyalgia daily, which affects my legs and feet mostly, but also my whole body.  It has gotten really bad over the years and coupling that with my chronic back pain, I am quite debilitated.  I am sixty also, so I am slowing down too.

Well, enough about me.  I just wanted to pop on and welcome you.  I hope you come back and let us know how you are doing.  We really do care.

God bless,

Lindaloo

Absolutely it does. Dislocations and subluxations occur daily for many of us. Most people never find a doctor who knows about it or how to treat it. Ehlers Danlos National Foundation (ednf.org) puts together an annual conference where some of the top doctors in EDS come to give presentations. There are some opportunities to consult one on one with these doctors. This year it will be in Cinncinati, OH in August. Information is on the website. Also at ednf.org you can read presentations from last years conference, there is also a forum on this site (inspire) where people submit questions or suggestions. It's a wonderful place to learn about EDS because these people live with it everyday and share so many great ideas to help improve the quality of our lives.

EDS is terribly under diagnosed. If your daughter is that flexible, she should start seeking for a diagnosis. The earlier you get it diagnosed and begin therapy, the better you will prevent further damage. It is genetic, is anyone else in your family flexible? Other common symptoms are chronic achey muscles and joints, chronic fatigue, sleep disorders, low blood pressure, POTS (body's inability to pump sufficient blood to the upper body when going from a sitting to standing position), soft, stretchy skin. All these symptoms are due to the DNA making faulty connective tissue. So every part of our body is weak and fragile.

Some people get diagnosed by a geneticist, some by a rheumatologist. Many search for years before getting a correct diagnosis often getting diagnosed with fibromyalgia, IBS, MS and many others. You can find research online from such doctors as Claire Francomono, Howard Levy, Rodney Grahme, Brad Tinkle are a few that I have met at conferences and have a heartfelt desire to help those with EDS. I must tell you that there are several types of EDS, Hypermobility and Classical being the most common. There is Vascular EDS where major internal organs can spontaneously rupture or dissect bringing almost immediate death. People in this group have a shorter life expectancy - around age 40. So it's vital that you first rule that out and there is a lab test they can do for that, where Hypermobility is a clinical diagnosis by someone who can measure the degree of joint hyperextension.

I am not going to type too much now as it is getting late here in the UK! I just wanted to say that I have seen the wonderful Professor Rodney Grahame and Professor Mike Pope - both world respected EDS specialists. It is a horrible condition, and it is good to see it being talked about here. I have emailed the site asking that EDS gets its own title and link on the homepage alongside the other conditions.

I have been researching it for 20 odd years and used to work for the national charity for it here. It is great to see some people here who have good knowledge of it and who are helping others. As is the case with so many rarer conditions, often the patients become the experts, educating medical professionals.

SKOLAH