Living with Ehlers-Danlos Syndrome, Type III – Hypermobile

Symptoms Yet to Be Recognized

Throw Me A Line!

Sometimes, because Ehlers-Danlos Syndrome, Type III – Hypermobile (EDS3) effects so many body parts from head to toe, it can seem as though a list of what is not caused by EDS3 would be shorter than what is. Articles by scientists, medical professionals, and lay people are available in great quantity on the internet. Those articles list a large number of symptoms that are recognized as being a result of EDS3. In truth, there is not one solitary list of every symptom because a comprehensive list may be an impossibility. Many lists have catch-all symptoms to cover the many possible symptoms, such as listing the wide-ranging symptom of “gastrointestinal problems.” Gastrointestinal problems certainly do result from EDS3, but that one single phrase represents countless symptoms, such as indigestion, Irritable Bowel Syndrome (IBS), constipation, diarrhea, and so on. Doctors and researchers may not yet know all of the gastrointestinal problems resulting from EDS3.

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However, this website is a forum for information sharing. In creating this site, I have done in-depth research into the list of symptoms we suffer due to EDS3. Below is a list of problems that I have found mentioned in a number of cases that I believe should be added to the official list, if there were such a thing, of EDS3 symptoms. PLEASE share with me what you know about these and other potential EDS3 symptoms.

Mental Symptoms

  • Kinesiophobia – an excessive, irrational and debilitating fear of physical movement and activity resulting from a feeling of vulnerability to painful injury or re-injury (I, personally, object to the words excessive and irrational)
  • Avoiding bathing/showering due to pain and exhaustion, as well as fear of injury
  • Immeasurable sleeping problems (unsure if this is a mental, whole-body, or above-the-neck symptom)

Whole-Body Symptoms

  • Waking up during surgery
  • Intense (painful) sensitivity to vibration from things as mild as riding in an elevator or vehicle
  • Having to lay down after bathing/showering
  • Wounds bound by stitches not healing
  • Residual pain signals from the site of an injury that is already healed
  • Intolerance to clothes, especially socks, shoes, underwear, and bras

Above-the-Neck Symptoms

  • Dry eye and other ocular symptoms, including macular degeneration
  • Cold, numb regions of the brain/head when supporting weight on one elbow
  • Too much pain for gum chewing longer than 15 to 20 minutes

Torso Symptoms

  • Feeling abdominal symptoms as pain in the low back, from having a bowel movement to being in labor
  • Adenomyosis – a condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus (the myometrium)

Lower Body Symptoms

  • High arches that fall to flat feet when standing
  • Foot pain

I am not imagining these things. Other people have admitted to them, as well. I look forward to your comments.

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