Ehlers danlos confusion

Hello everyone, i joined this forum in hopes of talking with other members that have ehlers danlos syndrome.  Im so confused.  I was diagnosed 5 years ago, but have not been back to see the doctor due to sever panic attacks.  As of now i have a chiari 1 malformation, 2 herniated disks in my neck as well as kyphosis of the cervical spine.  The worst in my left shoulder.  I have had 4 operations on my left shoulder and they only thing that is left is a fusion.  My right arms dislocates, as well as both hips, and my right wrist.  My ankles are so unstable i can barely walk at times.  I do not take anything for pain, and wow day by day its getting worse.  What confuses me is i do not have the stretchy skin like some members do.  I do not dislocate constantly, its more just the sever pain in my joints, with them cracking all the time.  My ribs sound like a bag of potato chips if i move the wrong way.  So im curious to see what other patients symptoms are.  My grandfater died of a ruptured aortic anyerusm, and my dad had one reparied, and now has another.  No one in my family has a history of ehlers.  So after years of research i am so confuse.  I am a 27 year old male.

[jen970]

I have similar symptomology. I have had chronic joint pain which started in my knees at age 12. I would have scored a 9/9 on the Beighteon scale for hypermobility in my 20s now its about a 5/9. I can volitionally dislocate both hips and have frequent subluxations of my upper three ribs. I have five herniated discs and other symptoms that are too numerous to list. I have yet to be diagnosed. Wether it is Ehlers-Danlos type lll or Benign Hypermobility Joint Syndrome (there is medical community confusion on if these are seperate disorders or variants of the same) I don't know and have been unable to get a diagnosis. Seeing a new rheumatologist soon so we will see.
I feel for you. I've been were you are. Doctors look at you as if it's all in our heads, however, they don't live in our bodies.
With the family history of aortic anerysm you may want to look into the Vascular form of EDS. There are many gradients of symptoms. Some patients have little or no skin involement. It is all variable from person to person.