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. 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]
  4. 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
  5. 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.
  6. 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]
  7. roge

    roge Member

    perhaps prolotherapy could help strenghten the joints as it strengthens ligaments.
  8. 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
  9. MtnDews

    MtnDews New Member

    Yes, I have been diagnosed with this.
    Helen