Ehlers-Danlos Syndrome

Discussion in 'Fibromyalgia Main Forum' started by pspatnode, Aug 19, 2005.

  1. pspatnode

    pspatnode New Member

    Hi Everybody,

    My niece has been diagnosed with Ehlers-Danlos Syndrome. From what I understand the gene that causes it is inherited. Does anyone know if it related to Fibro? Some types of it sound quite similar as far as the symptoms.

    Phyllis
  2. nancyneptune

    nancyneptune New Member

    no clue what that is! I must look it up.
  3. justjanelle

    justjanelle New Member

    I've got it; and yes, it is inherited.

    Practically all the relatives on my mom's side have it, going back at least 5 generations. We have the Type 3, also called "Benign Hypermobility Type". Basically, the joints are extra bendy and the connective tissue is stretchy.

    My rheumatologist I see for my FM tells me there's no real connection between FM and Ehlers-Danlos Syndrome. At least not with the kind I have. However, the Ehlers-Danlos does lead to worse arthritis in later years because of the excessive wear caused by the sloppiness in the joints.

    However, I have seen on a couple of the Ehlers-Danlos websites that they believe people with this condition do have a greater chance of developing Fibromyalgia. Again, dr. tells me there have been no studies done to support this (he says it's too hard to find enough people who have Ehlers-Danlos to get enough to do such a study.)

    Anyway, I guess for me, the Ehlers-Danlos is much easier to deal with than the FM. I get dislocated joints only a couple of times a year and due to the excess stretchiness, they don't really hurt like they do for "normal" people. While the FM is a daily struggle.

    I hope your niece does well.

    Best wishes,
    Janelle