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Is it ME or Ehlers-Danlos Syndrome?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Mar 23, 2013.

  1. Allyson

    Allyson *****

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    Hi All,

    I posted a thread on this medical theory which was conveyed to me by a professor of medicine at a one of Australia's highest-ranking university hospitals. He is also an expert in OI/POTS so he knows his material.

    I originally posted it in miscellaneous section but it has had over 12,000 views in under 3 months and a lot of positive reponses as people compare their symptoms and find they often match.

    So I am posting the link here for those who may have missed it and would welcome comments or feedback - if they are the same disease (as seems to be the case for some of us at least) we could combine resources and numbers to double our chances of getting research and cure.

    The symptom overlap is too staggering to be coincindental.

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/

    Many thanks to all who have responded.
    Shell and VeganMonkey like this.
  2. VeganMonkey

    VeganMonkey Senior Member

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  3. Jacque

    Jacque Senior Member

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    Very Interesting...yet another theory!!! I was always the "limber" one... The cheerleader at the end of the cheer who did the backward walkover and then into Russian spreads...and was always the circus sideshow bending my fingers back to the backs of my hands..and grossing people out! Like rubber fingers! When I was in my 20's and began searching for answers to my suffering I had a Dr. who wanted to diag me with ED..but that required a vaginal exam at the time, as I recall... to which I said FORGET IT!! Why is it that WE are out here in la la land trying to figure this CRAP out....I have been diagnosed with so many "syndromes" I am sydromed OUT... Maybe they should just rename this illness the "Syndrome Syndrome"..... that way we are covered.... grrrrrrrrrrrrrrrr
    Allyson likes this.
  4. Shell

    Shell Senior Member

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    I do like this theory. I am wondering if it would explain some of the weider stuff that has happened to me; there was the intubation problem with the GA I had but after that I had a spinal to deliver my now 8 year old dd. During the op the anasthetic simply switched off. My dd had only just been born. The anethetist told the surgean to get her hands out of me (I think she was rooting around for the placenta - I could feel it well enough!!!)
    Afterwards the poor anethetist admitted he didn't know why the spinal switched off. But the surgeon also came out to recovery to confess that surprisingly (to her) my guts had spilled out and so it took longer than usual to stitch me because she had so much to shove back in.
    Now, I grant you, I've done no research on the numbers for c-section and gut spillage, but it leaves me wondering about connective tissue...
    Anyone else have similar experiences?
    Allyson likes this.
  5. merylg

    merylg Senior Member

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    Shell http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1079398/

    I've experienced needing more local anaesthetic than average & needing more time for it to take...at different dentists & with gynae procedures.
    Have had one epidural, not sure about yours "switching off"...perhaps it was not topped-up enough??? or perhaps it DOES have something to do with a connective tissue disorder. Sounds awful!

    The "guts spilling out" :oops: does sound like weak connective tissue. (Hernias, prolapses & organs "dropping" are commonplace in CTDs)

    (My drs do think I have a connective tissue disorder, so I'm looking into it!)

    It would be worth finding out so you are more prepared for next time! ;)
    Allyson likes this.
  6. VeganMonkey

    VeganMonkey Senior Member

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    I need a bit more at the dentist too, but general anesthetic is all normal for me (had surgery half a year ago, no problems)
    Allyson and merylg like this.
  7. Allyson

    Allyson *****

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    This was just posted on an EDS forum
    World-renowned EDS Expert Dr Rodney Grahame points out that, in America, almost 650,000 cases of EDS are missed annually, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (fibro, chronic fatigue syndrome, etc.). - I have not read the link yet it takes ages to open

    See: http://tinyurl.com/cc5qk57
  8. Allyson

    Allyson *****

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    A vaginal examination for EDS????? Was the doc a male by any chance Jacqae???
  9. Jacque

    Jacque Senior Member

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    Yes he was male and this was about 25 or more years ago.... Said he needed to see if the uterine tissue and tendons were stretchy...which to me sounded sketchy and I declined....
    Allyson likes this.
  10. Allyson

    Allyson *****

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    interesting - have you had a look into the theory now - i read recently that everyone who is hypermoblie has it thought not from a scientific source and elsewhere i have read that id is not necessarly so
    my doc says these are the indicators for EDS type 3


    migraines allergies excema hay fever hernias varicose viens hemorroids prolapses positive gorlin' sign in the family
    diverticulitis joint pains
    i have alse read - tmj and most other ME symptoms like temp regulation problems etc

    i am going for testing at a local genetics clinic - after a cardiac ultrasound tomorrow
    apparently all forms of EDS should have a cardiac ultrasound now as there is cardiac risk there .....not just type 4

    cheers
  11. VeganMonkey

    VeganMonkey Senior Member

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    Do people with EDS often get osteoporosis? Or was that connected to CFS? I have read too many articles lately I can't remember which belonged to which haha.

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