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  • Anne
    Member
    Post count: 3

    I have been diagnosed with EDS and am 50 years old. Have had a lifetime of pain which seems to be getting worse in several area. My biggest concerns are with the spine regions, shoulders, hips, and throat (perhaps radiating from C2 region). All MRI and x-rays show minimal wear and do not account for the pain and is typical in EDS i.e., idiopathic pain.

    I try things now and again and recently went for a round of PT. Some good exercises as I didn’t realize how much I’ve been favoring certain areas. The PT gave me a hard rubber mobilizer wedge to use on myself at home. What it seems to do is help with any retrolisthesis but I need to do it about 3 times a day to be pain free. This is a big deal as I’ve had thoracic area pain all of my adult life and have started pain meds. and am facing disability. It seems to have worked a little better during those first few days. Is that because it’s really just a nerve distraction or something else? Is this a safe technique? Could I be causing the opposite trouble of spondylolisthesis?
    It seems like even pressure and I can’t even do it as hard as the PT.

    Also, I have what feels like shoulder dislocations but chiropractors can’t seem to detect them. Maybe it’s just unhappy tendons.

    My C2/throat area pain seems to hurt on flexion but nothing seems to help when I massage the C2 area. Could the larynx be shifting laterally and back and forth?

    Donald Corenman, MD, DC
    Moderator
    Post count: 8409

    Ehlers Danlos Syndrome (EDS) does create somewhat of a “loose spine” but you must be sure that you do not have other disorders independent of EDS. Mid-thoracic pain could also be derived from Scheuermann’s disorder (see website) or even a herniated disc.

    I assume you have had standing X-rays and an MRI to rule in or out the above noted conditions.

    The rubber mobilizer should be OK to use. This will help reduce the increased kyphosis that can be associated with EDS.

    Shoulder subluxations are not uncommon with EDS. Strengthening the shoulder muscles can help.

    Dr. Corenman

    PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
     
    Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
    Donald Corenman, MD, DC
    Moderator
    Post count: 8409

    Ehlers Danlos Syndrome (EDS) does create somewhat of a “loose spine” but you must be sure that you do not have other disorders independent of EDS. Mid-thoracic pain could also be derived from Scheuermann’s disorder (see website) or even a herniated disc.

    I assume you have had standing X-rays and an MRI to rule in or out the above noted conditions.

    The rubber mobilizer should be OK to use. This will help reduce the increased kyphosis that can be associated with EDS.

    Shoulder subluxations are not uncommon with EDS. Strengthening the shoulder muscles can help.

    Dr. Corenman

    PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
     
    Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
    Anne
    Member
    Post count: 3

    Minimal wear does not account for the pain or indicate any herniations. No kyphosis.

    Thanks.

    Donald Corenman, MD, DC
    Moderator
    Post count: 8409

    With EDS, strength can take the place of lax ligaments. The only problem with muscle tone is that fatigue can set in which is the limiting factor in EDS. I would not engage in activities that would stretch the spine like yoga but work on core and strength.

    Dr. Corenman

    PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
     
    Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
    Anne
    Member
    Post count: 3

    That is a common misconception about EDS. Yes, strength is vital. However, there are times when stretching is important as well. When done correctly, stretching can be the only way to get oneself out of pain. The balance of strength and knowing when and how to stretch is the key.
    The pain of EDSers is often experienced around the tendons. I would first start with heat though to relax the soft tissues. But yes, without strength, stretching alone is inadvisable. One has to be in touch with one’s body to know whether a tight muscle is at issue or weakness as both can cause a pain reaction, one in the soft tissue and the latter more deeply in the joint. I used to be a psychotherapist working with chronic pain and now work with soft tissue issues for the past 20 years.

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