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Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Nov 12, 2012.

  1. Valentijn

    Valentijn Activity Level: 3

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    Because any EDS symptoms I've had have been very mild and pretty much lifelong. ME symptoms developed very suddenly and with great intensity after 33 years of being pretty healthy.
    Not really. There's naturally some overlap in the OI symptoms for a few types of EDS (only some have vascular involvement), but that's about it. PEM is not an EDS symptom, and dislocations and flexibility and stretchy skin are not ME symptoms. Yet those are the hallmarks of the separate diseases.
    SOC, ahimsa and Sushi like this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    OI symptoms can be related to EDS...or not! Though I had very mild OI symptoms earlier in life, my major ones came on overnight as a result of the autonomic dysfunction that arose during an ME crash.

    OI often appears suddenly in teenagers after a Mono infection, so "arising later in life" is anecdotal and not the norm.

    EDS symptoms are not identical with ME thought there are some in common--look at the International Consensus Criteria for ME. Many ME symptoms are the result of damage done by viral and bacterial infections. These are not part of EDS. Treatment of viruses and bacterial infections in ME patients usually brings a significant reduction of OI and other manifestations of dysautonomia.

    The lab tests of ME patients show a great deal of immune dysfunction and many types of pathogens--viral, intracellular and blood borne. These are not related to EDS. PEN is also not found in EDS patients who do not have ME.

    Sushi
    leela, SOC, ahimsa and 1 other person like this.
  3. VeganMonkey

    VeganMonkey Senior Member

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    I got CFS because of EDS, I wouldn't call it ME because I certainly don't have a brain inflammation and it wasn't caused by a virus for me but by EDS. My EDS specialist said it's quite common to develop CFS from EDS, as well as getting OI from it. I have both sadly. OI would also add to the CFS symptoms.
    ahimsa and Allyson like this.
  4. Allyson

    Allyson *****

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    PEM - post exertional malaise - yes it IS a feature of EDS - often very severe.
    viral pathogens? none have been identified that typify the disease as yet.

    EDSers are extremely prone to all kinds of frequent viral infections and have them regularly - possibly due to immune dysfunction.

    I do not think enough testing and studies on dysautonomia and syncope have been done to make any broad sweeping statements about whether treatment of any viruses or bacteria reduces the incidence of OI /POTS - most PWME have never even been tested for OI/POTS at all - let alone have changes over time/ and in relation to viruses/bacterial infections studied.

    I wish such work had been done - alas it has not.


    A
  5. Allyson

    Allyson *****

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    I have read the International consensus criteria for ME - and the Canadian ones and the other criteria as well.

    EDSers ARE indeed prone to frequent viral and bacterial infection and other immune issues like allergies and IBS

    "arising later in life" ? - everything so far is anecdotal really as we have no stats to base any real discussion on alas - for some symptoms arise earlier than others - but for others they arise later - but then unless we are fully aware of all the symptoms how can we discuss this? for example how man suffer notion sickness and ear infections in childhood and do not realise this may be connected - an early symptom?


    "Many ME symptoms are the result of damage done by viral and bacterial infections"

    ??
    there is NO evidence to support this statement alas either
    could you stat precisely which symptoms?


    PEM - post exertional malaise - yes it IS a feature of EDS - often very severe.
    viral pathogens? none have been identified that typify the disease as yet.

    EDSers are extremely prone to all kinds of frequent viral infections and have them regularly - possibly due to immune dysfunction.

    I do not think enough testing and studies on dysautonomia and syncope have been done to make any broad sweeping statements about whether treatment of any viruses or bacteria reduces the incidence of OI /POTS - most PWME have never even been tested for OI/POTS at all - let alone have changes over time/ and in relation to viruses/bacterial infections studied.

    I wish such work had been done - alas it has not.


    A
  6. Allyson

    Allyson *****

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    Hi Justy
    here is an updated llnk to EDS 3 symptoms from my specialist - these are not on any other website that I have found nor published yet but come form excellent medical sources at Australia's top university.

    http://forum.notcrazy.net/index.php?topic=9571.0


    Also re your comment "I don't really seem to have OI"
    I do not think one can say this unless they have been properly tested for it by a knowledgeable specialist and had it ruled out - same for POTS - a lot of people say they do not have POTS nut they have never actually been tested for it ..... a bit like saying I don't have a hole in the heart - you may never know unless you have a cardiac echo done to rule it out.

    POTS and OI are very common ME symptoms but few have been properly tested alas to date.


    best,

    Ally

    Best,

    Ally
  7. Allyson

    Allyson *****

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  8. Allyson

    Allyson *****

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    or full link is up on and EDS fb page called "stiff zebras" - waiting for someone to post it for me here too
  9. Allyson

    Allyson *****

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    almost every single time I post now my post gets eaten by server before I finish it very frustating - is anyone else having this issue please?
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @Allyson

    The new software here saves a draft every 60 seconds. This is a boon if you have been losing your posts before you can get them posted.

    Best,
    Sushi
    Allyson and SOC like this.
  11. leela

    leela Slow But Hopeful

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    I'm pretty sure I have EDS type III. Can someone tell me what kind of doctor diagnoses this? Is it a specialty?
    Is there a point in getting diagnosed (especially if you have ME as well?)
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Leela,

    You can pretty much diagnose EDS III yourself as it is done through physical examination and there are many websites with photographs showing how to do this. You can also google the Beighton scale for diagnosing.

    http://www.nhs.uk/Conditions/Joint-hypermobility/Pages/Diagnosis.aspx

    Most docs don't know much about this though it seems to fall under rheumatology. You could probably do better diagnosing yourself though.

    I have both EDS III and ME and the benefit of knowing that I have EDS is to avoid overstretching, pay attention to body mechanics, and, for me, to have regular appointments with an osteopath who puts me back into alignment--this is important to avoid pain and so that the body doesn't "remember" mis-alignments and regard them as normal.

    Sushi
    leela likes this.
  13. Allyson

    Allyson *****

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    just lo
    just lost my reply again Sushi - about 5 lines written, and it disappeared -very frustrtating - I wil have to type them in word form now on first - is anyone else getting this still ? it does not happen to me on any other site, just here
  14. Allyson

    Allyson *****

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    geneticists and some rheumys and some blood pressure specialists/ cardiaolgists

    EDS 3 is much much more that just hypermbolity, though if you are HM you most likely DO have EDS 3

    you need to find an informed doctor in your area - there are many EDS fb gropus you can ask around on for recommendations - I would not see anyone not recommended as if they do not know about it they say it is rare so you could not have it - crooked logic.

    good luck

    ALly
  15. Allyson

    Allyson *****

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    btw rheumys in the USA are apparently a bit behind the 8 ball so you might have trouble getting one so look out for any specialist who does know about it

    here is a link to a list of more symptoms for you to get a start on self - diagnosis in the abscence of informed medicos near you

    Check the symptoms of EDS at this link:
    http://forum.notcrazy.net/index.php?topic=9571.0

    best

    Aly
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Look under drafts--3rd from the left. Do you see they gray print message telling you it is saving a draft?

    Best,
    Sushi
    Allyson likes this.
  17. Allyson

    Allyson *****

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    thanks sushi - 3rd form left of what ? I looked and cannot find that tg - under my profile?


    @leela here is one international EDS site that you could ask r a good EDS doc on - Stiff Zebras (anything zebra means EDS)
    https://www.facebook.com/groups/455374384560623/
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    As you write your post, look at the editing choices above the window you are writing in. The first is Tx and the last are arrows going in opposite directions. The draft icon looks like a computer disk.

    Best,
    Sushi
    Allyson likes this.
  19. leela

    leela Slow But Hopeful

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    over here, the drafts are third from right, after the two arrows...a little zip-disk looking thing.
    to be fair, @Sushi, it is to the left of the arrows!
    Allyson likes this.
  20. leela

    leela Slow But Hopeful

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    thanks, allyson. it's unfair that everything is on FB now, which I am not. :(
    oh, and thanks too for notcrazy--which is where i learned i prolly am EDS.
    Allyson likes this.

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