Ehlers-Danlos anyone?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by ILoveGreen, Jun 10, 2012.

  1. ILoveGreen

    ILoveGreen New Member

    Has anyone been Dx'd with this? It's a form of arthritis characterized by loose "double" joints, growing pains, muscle fatigue, vascular abnormalities, and a host of other symptoms. It is often misdiagnosed as, you guessed it, FM.
    Angela
    [This Message was Edited on 06/10/2012]
  2. Mikie

    Mikie Moderator

    It's better to know than to be misdiagnosed. Is there any treatment for this? I hope so. Keep us updated.

    Love, Mikie
  3. freida

    freida Active Member

    I hadn't heard of it, at least not by that name,
    but I looked it up after seeing you first post on it, Angela.

    Have you been diagnosed with it?
    I thought it started quite young, if it is what I thought it sounded familiar, when I read about some of it.
    Did you get a different dr who suspects it, or do you?

    HOw are you doing with preparing to move???

    Thinking of you!
    Leah Freida

  4. deepak

    deepak Member

    This site has good info on things that might help EDS.

    www.ctds.info

    Its managed by a lady who has it herself and what has helped her.


    Btw, do you have thin blood vessel walls and what do you take for it, if so ?

    Love,
    Deepak
    [This Message was Edited on 06/11/2012]
  5. ILoveGreen

    ILoveGreen New Member

    Just got a referral to a rheumy from my GP. My appointment is 6 wks from now.

    Freida, thank you for your concern about my move. I have postponed it for a month or two pending Dx and necessary PT.

    This impending Dx comes at a strange time, because nearly two years ago I hurt my shoulder when preparing my mother's home for sale after her death. The ortho wanted to do rotator-cuff surgery. Thankfully I went for a 2nd opinion only to find it was a torn bicep. In hindsight, it was probably due to my loose, unstable shoulder joints and from lifting heavy boxes.

    Deepak, I appreciate your concern, and thank you for the website.
    Angela
  6. pansy17

    pansy17 New Member

    I have this (hyper mobility type). Only way to deal with it is physical therapy to strengthen joints.

    The impaired connective tissue affects every organ system. I also have FM and psoriasis. At 65, I have osteo arthritis, especially in my lower back.

    Good luck.
  7. ILoveGreen

    ILoveGreen New Member

    Other than the recommended PT, what else should I ask about at upcoming appt. with the rheumy?
    Although I haven't seen the rheumy nor have I been formally Dx'd, I have started PT. So far, so good.
    Can you explain how "the impaired connective tissue affects every organ system" applies to you? I'm interested in learning as much as I can about this. Thanks.
    Angela
    [This Message was Edited on 07/07/2012]
  8. roge

    roge Member

    perhaps prolotherapy could help strenghten the joints as it strengthens ligaments.
  9. ILoveGreen

    ILoveGreen New Member

    Dx is NOT Ehlers-Danlos, but extremely loose joints, with Osteo-Arthritis in every major joint in my body and spine as well as degenerative bone and disc disease. I am very relieved to have no sign of an inflammatory condition or any new Dx, according to the Rheumy. He didn't run bloodwork and based his Dx on a workup and physical exam. He said if I had EDS I would have some tell-tale physical signs which I definitely did not have. Yeah!
    Thankfully, I was pro-active and started PT 3 wks ago to avoid injuring myself while moving. In the past I'd only done it post-injury, as in after an auto accident. Now I realize the benefits of strengthening atrophied muscles in pain management. I would highly recommend PT as part of a pain management program. The time commitment is worth it.
    Angela
  10. MtnDews

    MtnDews New Member

    Yes, I have been diagnosed with this.
    Helen