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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. Allyson

    Allyson Senior Member

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    merylg and VeganMonkey like this.
  2. Allyson

    Allyson Senior Member

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  3. Allyson

    Allyson Senior Member

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  4. Allyson

    Allyson Senior Member

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    For anyone with bleeding disorders - easy bruising, nosebleeds, petechieai etc


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

     

    Bleeding and Bruising in EDS

    bleedng and bruising in EDS 2004

    http://www.medicine.wisc.edu/~williams/eds.pdf



    bleeding disorders in EDS 2003

    http://www.ijdvl.com/article.asp?issn=0378-6323%3Byear%3D2003%3Bvolume%3D69%3Bissue%3D7%3Bspage%3D52%3Bepage%3D55%3Baulast%3DSawhney


    platelet and coagulations studies 1991
    http://www.ncbi.nlm.nih.gov/pubmed/1911298
  5. VeganMonkey

    VeganMonkey Senior Member

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    Thanks, I will read that :) I bruise very easily
    Allyson likes this.
  6. merylg

    merylg Senior Member

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    Allyson likes this.
  7. Allyson

    Allyson Senior Member

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    I have been given an appt at the genetics dept of Royal Melbourne Hospital Australai to check out EDS

    there is a vsscular form of it too and anyone who has any type of it it should have a cardiac utrasound as a precaution

    They are going to do a cardiac ultrasound on me prior to my appt.

    They phoned and a nurse asked a full history including my symptoms, all siblings and parents' symptoms and who of the siblings had had kids and theeir symtpoms ;

    They were interested in things like Gorlin's sign - who was positive ( ie can touch nose with tongue)

    stretch marks? Are they large and unusual

    any clear skin that you can see the veins through

    Other symptoms: asthma, excema, allergies, hay fever, aneurysisms, hernias, haemoerroids, nosebleeds, easy bruising, slow wound healing, unusual or excesive bleeding
    skin tags, sore joints, arthritis

    unusual scars (eg with white tissue in them) - this ocdurs esp on lower legs

    double jointedness (they were not SO intereted in this)

    POTS/OI - they will request my 48 hr halter monitor and BP readings from my specialist prior ot my appt.

    Great to see they are so thorough.

    They were really lovely so I recommend anyone who thinks they may have EDS to contact them too.

    You just need a GP referral then they phone you to assess you prior to appt.

    There is no cost.






    ,
    merylg and ahimsa like this.
  8. VeganMonkey

    VeganMonkey Senior Member

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    I'm glad you finally got the ball rolling! Strange they weren't interested in hypermobility. I wonder what they would say to me, there are heaps of symptoms I don't have or only have a bit.
    Allyson likes this.
  9. Allyson

    Allyson Senior Member

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    yes VM, I have NO hypermobility at all

    that is the thing with EDS - as a connective tissue disesase it affects eveyone differently - even within the same family.

    Only a month to wait for the appt too and cardiac ultrasound in a few weeks.

    they could not have been lovlier every time i have dalt with them - I am so pleased.
    VeganMonkey likes this.
  10. Allyson

    Allyson Senior Member

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    I have not read it but share this reference....(sound familiar?)

    Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome, hypermobility type): principles and proposal for a multidisciplinary approach.
    Castori M, Morlino S, Celletti C, Celli M, Morrone A, Colombi M, Camerota F, Grammatico P.


    Source
    Division of Medical Genetics, Department of Molecular Medicine, Sapienza University, San Camillo-Forlanini Hospital, Rome, Italy. mcastori@scamilloforlanini.rm.it


    Abstract
    ... Joint hypermobility syndrome (JHS), or Ehlers-Danlos syndrome (EDS) hypermobility type (EDS-HT), is a underdiagnosed heritable connective tissue disorder characterized by generalized joint hypermobility and a wide range of visceral, pelvic, neurologic, and cognitive dysfunctions. Deterioration of quality of life is mainly associated with pain and fatigue. Except for the recognized effectiveness of physiotherapy for some musculoskeletal features, there are no standardized guidelines for the assessment and treatment of pain and fatigue.


    In this work, a practical classification of pain presentations and factors contributing in generating painful sensations in JHS/EDS-HT is proposed. Pain can be topographically classified in articular limb (acute/subacute and chronic), muscular limb (myofascial and fibromyalgia), neuropathic limb, back/neck, abdominal and pelvic pain, and headache. For selected forms of pain, specific predisposing characteristics are outlined.

    Fatigue appears as the result of multiple factors, including muscle weakness, respiratory insufficiency, unrefreshing sleep, dysautonomia, intestinal malabsorption, reactive depression/anxiety, and excessive use of analgesics. A set of lifestyle recommendations to instruct patients as well as specific investigations aimed at characterizing pain and fatigue are identified. Available treatment options are discussed in the set of a structured multidisciplinary approach based on reliable outcome tools.
  11. Allyson

    Allyson Senior Member

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    HI everyone - thanks for all the useful feedback
    .
    Thankfully geneticists and others in senior medical posisitons are now taking (ME and) EDS as the serious physical illness it is in all its many manifestations - as you would expect from something genetic affecting all the connective tissue in the body!.

    Here's another reference I have not read yet - I hope is has not been posted before.

    A Multi-Disciplinary Approach to Managing Ehlers-Danlos (Type III) - Hypermobility Syndrome [Illustrated]

    Isobel KnightHYPERLINK \l ""

    Isobel Knight (Author)

    http://www.amazon.co.uk/dp/1848190808/ref=tsm_1_fb_lk

    Many dislike the name hypermobility syndrome however as it is now known that many with EDS 3 are NOT hypermoblie - (though many are) and thus they often miss out on a diagnosis due to this name (HMS) . There is a push gto call it EDS 3 again.
  12. Allyson

    Allyson Senior Member

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  13. dannybex

    dannybex Senior Member

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    Allyson,

    With all due respect, what in the world does the 'compression devices' link have to do with the holistic link I posted a month or two ago? The woman who started that link no longer has EDS -- she recovered by changing her diet. I guess no one wants to hear that...
  14. Allyson

    Allyson Senior Member

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    All in the line of holistic approaches. One cure though is not really strong evidence though ...can it then be replicated i is the issue.
    I think ecompression devises are the same thing the Dr from John Hopkins Uni talks about in his POTS utube clips where he tlks about M.A.S.T. devices do for forcing the blood back up the legs- the sme thing compression clothing could assist with if ti were lightwight and cool.
  15. Allyson

    Allyson Senior Member

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    All in the line of holistic approaches

    . One cure though is not really strong evidence though ...can it then be replicated in others is the issue.

    I think compression devises are the same thing or similar to what DPeter Rowe from John Hopkins Uni talks about in his POTS u tube clips where he talks about M.A.S.T. devices do for forcing the blood back up the legs- the sme thing compression clothing could assist with if ti were lightwight and cool.
  16. dannybex

    dannybex Senior Member

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    Well, it's my understanding that what worked for Sandy Simmons worked for her family, and perhaps others who follow her site. You'd have to contact her for confirmation however.

    And I'm sure we'll have to agree to disagree, but while compression devices may help some temporarily, they're really treating a symptom, or the symptoms IMO, and not addressing the possible causes of EDS/POTS/ and or ME/CFS.

    Best of luck!
    Allyson and Dreambirdie like this.
  17. Allyson

    Allyson Senior Member

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    Absolutely agree they are treating symptoms only - I think that is all anything does at this stage alas.



    MUSCLE FASCIA are connective tissute so also affected by ED - eg tihgt muscles and freqnuent injuries, and a gain a multisystemic issue that matches the mutiplicity of our symptoms. Ans this may expalin why massage helps so many of us... for me it needs to be light pressure only to help.

    What is Fascia?
    Fascia is tough connective tissue that creates a 3-dimensional web extending without interruption from head to toe. Fascia surrounds and infuses... every muscle, bone, nerve, blood vessel, and organ, all the way down to the cellular level.

    The fascial system affects every system and function in your body- musculoskeletal, neurological, metabolic, etc. The white, glistening fibers you see when you pull a piece of meat apart or when you pull chicken skin away is fascia.

    What is Fascia made of ?
    Fascia consists of a complex which has three parts:
    1. Elastin fibers - This is the elastic and stretchable part of the complex.

    2. Collagen fibers - These fibers are extremely tough and give support to the
    structure.

    3. Ground substance/matrix: A gelatinous like substance that transports metabolic
    material throughout the body

    What does fascia do?
    The fascial system generally supports, stabilizes, and cushions. Fascia creates separation between vessels, organs, bones, and muscles. It creates space through which delicate nerves, blood vessels, and fluids can pass.

    What are Fascial Restrictions?
    In a healthy state, the collagen fibers wrap around the elastic fibers in a relaxed, wavy configuration. Trauma, repetitive motion, inflammation, or poor posture can cause the fascia to become solidified and shortened. These thickened areas are referred to as a fascial restriction. Fascial restrictions have the capacity of creating up to 2,000 pounds of pressure per square inch in a restricted area. That crushing pressure can compromise any physiological system in the body resulting in pain and dysfunction.

    The fascia throughout the body is all interconnected like the yarn in a sweater or a complex spider web. A restriction in one area of the body creates tension throughout this web pulling on other distant structures. This explains why some people may have pain that appears unrelated to their original injury. Furthermore, myofascial restrictions do not show up on common standardized tests such as x-rays, MRI, CAT scans, etc.

    Fascial restrictions can pull the body out of its normal alignment, compressing joint surfaces and bulging disks, resulting in pain, loss of motion, and weakness.

    Info collected from Spine - Health, Mayo Clinic, NIH & Medterms
  18. Shell

    Shell Senior Member

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    Thanks for all the info links Allyson I will be doing some reading. I too bruise easily and stay brusied for silly amounts of time.
    I've only had platelets checked when pregnant and always ended up with doctors muttering about them being so low. One doc told me he didn't want to do the C-section I needed because I would bleed too much. As it happened I only lost 800mls and thankfully "Mr. Panic" didn't do the op.
    I did heamorra... oh sod the spelling - bleed a whole lot - after my 10 year old and I ended up bleeding out badly when I lost a baby. lights'n'sirens situation, but I don't think I am a regular bleeder.

    It's all interesting stuff. More reading to do...
    Allyson likes this.
  19. VeganMonkey

    VeganMonkey Senior Member

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    Has anyone tried compression devices? I have tried out compression stockings, the specialist said I should wear them, but they do nothing when I wear them during the day. Except sometimes when my legs are swollen they help putting them back in order :) I will try in winter again, it has been too hot to wear them at night and that's when I think they do help a bit for me. I am not sure though, because I haven't tried them for a long enough time because they were killing me (too hot)

    Some say you need not only compression for the legs but also for the body, does that work for anyone?
    Allyson likes this.
  20. Allyson

    Allyson Senior Member

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    yes vegan I find calf length medical stocking so NOTHING at all for me.

    the best thing in the heat is to wear a stretchy clingy singlet dress - like lycra or clingy cotton

    I find you do NOT need too much pressure - light pressure all over is quite good - eg a clingly cardigan.
    But if i had to schoose something on the abdomen is best;
    next best is tights - normal footless tights are good but they need to come to the waist

    apparently that is because they exert pressure there onteh major abdominal blood vessels which is where most of the blood pools when you are upright.
    I find putting ccompression clothing on will bring me out of a crash

    so i am hoping they develp light cool suits we cousl wear all teh time -
    I know they are working on that for astonauts as they have the same issues as us when they are in space
    so hopefully we will get some flow- o effect from all those NASA billions eing spent on looking for martians.

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