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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. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    OK, move my post to ME moments! :rolleyes: Yes, it is 3rd from the right to me too! Duh and double duh!

    I was counting to the left, from the right hand side!

    Sushi
    Allyson likes this.
  2. WillowJ

    WillowJ Senior Member

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    yes, my messages at PR sometimes disappear, or sections of them disappear. It generally happens when I hit enter or when the compose box acquires a side scroll bar. Either the whole message will disappear, or it will disappear up to a quote, or a paragraph or three will disappear.

    Sometimes I can recover them with the Edit/undo function on my browser (Firefox), sometimes not. I have not lost one since the "save draft" feature came back here, so I've not tried that yet.

    @wdb
    Allyson likes this.
  3. Allyson

    Allyson *****

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    yes there is a LOT on FB now Leela - heaps of POTS pages too - you do not need your real name to sign up - many use evident nick names etc and it is well worth being on for the wealth of info and exchange of symptoms

    good luck with it all - and do keep us updated on your progress

    ALly

    yes I just got a draft saved message then thanks @Sushi in bottom right - thanks - that seems to be working for me now !
    WillowJ likes this.
  4. merylg

    merylg Senior Member

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  5. Allyson

    Allyson *****

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    thanks MerylG - very interesting. Dr Francomano is, I believe, one of the several top specialists around the world who now believe NOT need to be hypermobile to have EDS.


    cheers

    Ally
  6. Allyson

    Allyson *****

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    Exertnal Dyspnea - a common symptom of EDS and ME - how common is it ??

    I remember when I was ill but still at uni and I went to an all-day seminar in the usual hot, crowded room - Well I kept getting up to run out for water, toilet, errands... any excuse to move (all largely unconscious) -- which made people wonder how ill I was if I kept moving around that much - but it was preferable to sitting - and of course I crashed subsequently - which they did not see.

    So it occurred to me that one very common and easily tested but hugely overlooked symptom is exertional dyspnea, which I think is almost universal to this illness?

    I notice they are running lung ads on TV here in Australia at the moment saying that if you can't walk up one flight of stairs without getting short of breath there is something wrong and you need your lungs tested

    I have just 10 steps up to my bedroom and never fail to get SOB when I go up them - have had it since I was 30 at least , and no matter how fit I am - eg when I was doing aerobics and cycling regularly.

    It is kind of a litmus test I have read - cheap and easy but no docs test for it.

    Everytime I go up to answer the phone people say "Oh, did you run to the phone" - No.

    Does anyone else get this - or more to the point does anyone NOT get it please?

    many thanks

    Ally
    Last edited: Nov 18, 2013
  7. Allyson

    Allyson *****

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    EDSAUS are pleased and excited to be able to tell you all about a major EDS study that is happening through the University of Sydney, Australia and to invite you to consider becoming a part of the study as they are still looking for 120 participants from around the country. I do have documents with more detailed info about the study, but thought I would just share 'must know' information with you all here as I have with all EDSAUS members (so if you are a member of EDSAUS - You may have seen this already

    This study is aimed at adolescents (over 16) and adult patients who have:
    - Been diagnosed with EDS Hypermobile Type (or a combination of Types, one of which being Hypermobile Type)
    - Been diagnosed as having Joint Hypermobility Syndrome/Benign Joint Hypermobility Syndrome
    - Generalised hypermobility who meet the Brighton criteria (see attachments) - even if they haven't been given a formal diagnosis of any kind

    The overall goal of this study is to determine the prevalence of the broad range of signs and symptoms in an adult population who are perceived as being hypermobile.

    To be a part of this study, participants simply need to contact Anne Krahe and she will send you a detailed questionnaire to fill in (taking about 30mins) which covers things like age, ethnicity, joint pain, soft tissue injury history, family history, fatigue, episodes of fainting or stress incontinence, gastrointestinal symptoms and history of low trauma fractures. Your height and weight will be recorded and then a series of physical tests will follow such as assessing your hypermobility, skin elasticity and thickness, balance, joint laxity etc.

    For those living in Sydney, physical testing will take place at the Faculty of Health Sciences in Lidcombe NSW, or possibly in your own home at a time that suits you if you are unable to travel. Interstate participants are encouraged to fill in the questionnaire, and if, in the future we have enough participants and a venue in various states, we may possible be able to organise a day where physical assessment can take place. Even if it turns out that physical testing cannot be performed, filling in the questionnaire is crucial to the data collection aspect of this study.

    Because this study is completely voluntary, participants may choose to withdraw at any time. Any and all aspects of the study are strictly confidential and while a report of the study may be submitted for publication, all participants will remain anonymous and unidentifiable.

    I urge all our members who meet the criteria to consider applying to participate. The researchers need a large pool of patients with varying degrees and severities of EDS Hypermobile Type/JHS/Generalised hypermobility to be able to compile a broad, solid list of data that gives them a proper insight into this particular group of patients. This study is the first of its kind here in Australia, and it is important to support these studies locally, not only so we can get statistics on various populations of patients, but so that we as a country can contribute to the worldwide effort of piecing together of EDS, its genes, prevalence, research and management options.

    If you would like more information about this study, please do not hesitate to contact Anne Krahe via email at akra2983@uni.sydney.edu.au - she is more than willing to discuss this study with potential participants and will be able to answer any questions you may have.



    A
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  8. Allyson

    Allyson *****

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    Last edited: Nov 18, 2013
  9. Allyson

    Allyson *****

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  10. Allyson

    Allyson *****

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  11. Allyson

    Allyson *****

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  12. Allyson

    Allyson *****

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    .—Classification of EDS. and genes associated - note now 17 types

    CASTORI 2103

    Subtype Inheritance Gene(s)

    Major forms
    Classic AD COL5A1, COL5A2
    Hypermobility/JHS AD? Mostly unknown
    Vascular AD COL3A1
    Kyphoscoliotic AR PLOD1
    Arthrochalasia AD COL1A1, COL1A2
    Dermatosparaxis AR ADAMTS2
    Rare/emerging forms

    Tenascin X-de!cient AR, AD? TNXB
    Classic with vascular rupture AD COL1A1
    Cardiac-valvular AR COL1A2
    EDS/OI overlap AD COL1A1, COL1A2
    With periventricular heterotopia XLD FMNA
    Musculocontractural AR CHST14
    Spondylocheirodysplastic AR SLC39A13
    Progeroid AR B4GALT7
    Kyphoscoliotic with deafness AR FKBP14
    Parodontitis AD Unknown
    Fibronectin-de!cient AR Unknown
    AD: autosomal dominant; AR: autosomal


    Ally
  13. Allyson

    Allyson *****

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  14. Allyson

    Allyson *****

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    July 2014 EDS conference in Sydney

    http://www.edsconference.com.au/2014/

    EDS Conference 2014 Sydney Australia - definitely July not october
    www.edsconference.com.au
    To be held in Sydney, Australia in October 2014, focussing on Ehlers-Danlos Syndrome and other hypermobility syndromes and associated conditions.

    A
  15. Allyson

    Allyson *****

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    Castori et al 2013

    thanks to Bob for finding this

    Am J Med Genet A. 2013 Dec;161(12):2989-3004. doi: 10.1002/ajmg.a.36315. Epub 2013 Nov 6.
    Re-writing the natural history of pain and related symptoms in the joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type.
    Castori M, Morlino S, Celletti C, Ghibellini G, Bruschini M, Grammatico P, Blundo C, Camerota F.
    Source
    Division of Medical Genetics, Department of Molecular Medicine, Sapienza University, San Camillo-Forlanini Hospital, Rome, Italy.
    Abstract
    Joint hypermobility syndrome (JHS) and Ehlers-Danlos syndrome, hypermobility type (EDS-HT) are two clinically overlapping connective tissue disorders characterized by chronic/recurrent pain, joint instability complications, and minor skin changes. Fatigue and headache are also common, although are not yet considered diagnostic criteria. JHS/EDS-HT is a unexpectedly common condition that remains underdiagnosed by most clinicians and pain specialists. This results in interventions limited to symptomatic and non-satisfactory treatments, lacking reasonable pathophysiologic rationale. In this manuscript the fragmented knowledge on pain, fatigue, and headache in JHS/EDS is presented with review of the available published information and a description of the clinical course by symptoms, on the basis of authors' experience. Pathogenic mechanisms are suggested through comparisons with other functional somatic syndromes (e.g., chronic fatigue syndrome, fibromyalgia, and functional gastrointestinal disorders). The re-writing of the natural history of JHS/EDS-HT is aimed to raise awareness among clinical geneticists and specialists treating chronic pain conditions about pain and other complications of JHS/EDS-HT. Symptoms' clustering by disease stage is proposed to investigate both the molecular causes and the symptoms management of JHS/EDS-HT in future studies.
  16. Allyson

    Allyson *****

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  17. Allyson

    Allyson *****

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    this illustrates why abdominal compression can be so helpful in POTS sue to EDS

    who can remember tht their mother wore a girdle? maybe this is why

    when these large vessel get enlarged like a varicose vein does there is going to be a LOT of blood pooling

    http://www.healthline.com/human-body-maps/female-abdomen-circulatory


    for my money tight compression to the abdo and light to the legs is the go


    ALly
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  18. Allyson

    Allyson *****

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  19. Allyson

    Allyson *****

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    regarding EDS
    I read the other day that one of the things adrenaline does is makes you tense all your muscles ready for flight/fight

    of course I knew that but the word "tense" caught my eye

    if we have constant adrenaline release that might lead to constant muscle tightness and aches

    especially the typical coat hanger pain of EDS

    cheers

    Ally
  20. Allyson

    Allyson *****

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