Does anyone have joint laxity or EhlersDanlos?

Discussion in 'Fibromyalgia Main Forum' started by Heirloom, Jun 16, 2006.

  1. Heirloom

    Heirloom New Member

    I noticed that someone on the boards mentioned they had Ehlers-Danlos, and I have wondered if I have this syndrome. I have laxity in my ankles, which caused a fracture last August. I am going through physical therapy now to improve the strength in both ankles, but if the pt doesn't work, the doctor is considering ligament surgery.

    Does anyone else have laxity in any of their joints? Also, does anyone know if joint laxity is part of fibro? If anyone has been diagnosed with Ehlers-Danlos, how did you get a doctor to diagnose you?

    I don't want to make more of the situation that I should, but the orthopedic surgeon told my husband and I that I had laxity in my ankles that was probably genetically based, and I don't really understand if this laxity is related to fibro or Ehlers-Danlos or neither one.
  2. sues1

    sues1 New Member

    sorry that I can not help more.....Susan
    Also google Laxity
    http://www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html
    [This Message was Edited on 06/17/2006]
  3. justjanelle

    justjanelle New Member

    It goes back in my family at least 5 generations, but we never knew it had a name until I was diagnosed 20 years ago.

    As far as the diagnosis goes, it is primarily done on the basis of the bendy-ness of certain joints. There are specific areas tested, and if you have a "score" of over a certain number that bend sufficiently or are double-jointed then they diagnose Ehlers-Danlos.

    It's been 20 years, but the tests I remember are as follows: index finger (does it bend more than 90 degrees toward the back of your hand?), thumb (can you bend it down to touch your wrist?), little finger (can you bend it back to come close to touching the back of your wrist?), hand (can you bend it back so your fingers run parallel to the top of your arm?), elbows (can you "straighten" your arms so far they go past straight and angle down from the elbow -- double-jointed elbows?), shoulders (can you reach one arm over your shoulder to your back and the other arm under to reach your back like you're trying to scratch that "hard to reach spot"? and how close can you come to reaching it?), general stretchiness (can you bend forward at the waist and lay your fingers/palms on the floor?), knees (will they "straighten" past straight until bent backward? Double-jointed?). There may have been a couple more, but this gives you the general idea.

    Regarding your ankle injury -- I so understand. I'm always turning my ankles, and I'm still recovering from one that caused serious breakages in my foot which required a plate and pins be put in to stabilize the fractures.

    Anyway, my orthopedic surgeon and I were discussing the ankle laxity as it relates to the Ehlers-Danlos and future ankle-twisting episodes. The idea of tightening up the ligaments was mentioned, but he said that in people with Ehlers-Danlos, the ligaments were so stretchy that even if the ligaments were surgically tightened they would continue to stretch and within a year they'd be right back as loose as before the surgery. He didn't recommend even trying. If you get the Ehlers-Danlos diagnosis this is certainly something to discuss with your own surgeon.

    Hope this helps, and best wishes on the physical therapy progress.

    Janelle


  4. janieb

    janieb New Member

    I've wondered about this for a long time. As near as I can tell our Ehler's goes back at least 3 generations. I have a 25 year old niece who is following totally in my footsteps.

    She is hyperflexible, diagnosed with Ehler's and has fibro. I was diagnosed as hyperflexible, and fibro, also.

    Both of us have very long necks. There's also one great niece who seems to me to be hyperflexible at 3 years.

    When I finally found a specialist for my fibro, she put me on an exercise program and told me that anytime you use fibro and hyperflexible in the same sentence, it scares trainers.

    It was very important to find someone with experience who was willing to take me on.

    I'm using the Guai Protocol now and it appears it may be working. Since I'm fairly new to this board, that's all the information I have for you.

    Good luck, stay in touch, and Blessings,

    janieb
  5. justjanelle

    justjanelle New Member

    for Heirloom.

    Janelle