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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. Sharon Lang

    Sharon Lang

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    Dry needling helps my pain, but like everything, it is a temporary relief. Similar to acupuncture except it goes into the muscles. A pt does it.
    ukxmrv likes this.
  2. Allyson

    Allyson *****

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    Thansk for that Sushi - yes i havnt treid them bu saw aomwnon in them yseterday - leggins and they look great too

    Actually though I find i do NOT need much comprssion - even very light helps

    so normal off the rack 3/4 leggings ( cooler length) and singlet of stretcy clingy fabric - and cardiy of same really seem to help. The main thing is the do need to cover the abdomen - legs whn standig up too.

    I see some footy teams here are using special new fabric that stays cool too - one that was develpoed for astronauts

    staying cool seems to be the new thing in professional sports -they are using refrigeration units for the players here at half time etc

    if we could all wear an undersuit like that - hello superman - we might all be able to manage a lot better and have feer crashes

    of course the coolness is extra important for us to prevent vasodiatation and to stop the need for extra peripheral blood flow to cool us down.

    I am getting a chillow to take to he gym to lie on my abdo to keep me cooler - meantime i take a frozen ottle of water and rest it on me and drink it as it melts....lessens crash effect next day.
  3. Sharon Lang

    Sharon Lang

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    Nike has compression shorts. I ordered some for my daughter.
  4. Allyson

    Allyson *****

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    Here is the link for people in and near Australia who want a referral to see Professor O'Callaghan at the Austin Hosopital, Melbourne for EDS /OI /POTS NMH

    http://www.austin.org.au/page?ID=568 form there go to contact us for other details.
    merylg likes this.
  5. Sharon Lang

    Sharon Lang

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    http://www.cfids.org/webinar/slides-090110.pdf


    I tried to copy this. This is updated research by Rowe associating eds, cfids, and OI (pots/nmh). He has three coven centric circles. They each have one diagnosis and overlap. You could have one diagnoses alone, two or all three. It will not paste, but show that no one is saying eds is he cause , but there are populations that have multiple diagnoses.
  6. Allyson

    Allyson *****

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    EDS AND THE EYES

    I FORGOT WHO ASKED ABOUT EYE issues but this article says the eyes are nearly all made up of collagen so affected often in EDS

    It meantions Photophobia as a symptom
    http://www.newtons-online.net/histories/ehlers danlos eyes.pdf


    Ally
  7. Sharon Lang

    Sharon Lang

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    wastwater and Allyson like this.
  8. MishMash

    MishMash *****

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    Ally,
    Another interesting feature of EDS. I wonder if EDS patients have a higher rate of glaucoma? That's too much pressure in eyeball. No one knows why the fluid ducts in the eyeball stop working. Could it be they collapse on themselves? Enquiring minds would love to know.

    Having EDS reminds me of the Modern English song "I'll Melt with You." That's what's happening to our bodies. (Except, it isn't "getting better all the time now.")

    Allyson likes this.
  9. Allyson

    Allyson *****

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    Perth FACE SPACE PROJECT


    i have been sent info from an EDS link on facial fatures in EDS - often tend to have large almond shaped eyes widely spaced, broad cheekbones, heart shaped face, think lips and attached earlobes. I have noted this pattern a lot in people who reply in the affirmative to posts on the topic.

    then I saw this info on ABC TV - govt station so reliable on a new research initiative

    Facial imaging testing shown on a TV show -
    ABC 24 TV Saturday 1130 AM 4th May 2013 State to Sate is the program name,

    Perth Face Space Project

    Dr Mark Walters
    cranio-maxo-facial specialist

    and

    Dr Gareth ?Beynam Clinical Geneticist
    Western Australia
    assembling a reference bank of young faces

    Photograph in 3-D the faces and heads of kids from 1 month through to 25 years old
    study healthy youth for later illnesses -( too )

    digital photography with multiple lenses creates a virtual 3-D image


    looking for facial signatures or patterns of variation
    clues to predict the onset of rare diseases.
    filter out normal variance noise
    quick and efficient and gives reliable information
    Australia is hoping to develop and export this technology.
  10. Allyson

    Allyson *****

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    yes, right again Mish Mash i have definitely seen glaucoma listed as an issue with EDS - forgot where now; but PW EDS need to have eye check regularly.


    possibly it was EDNF network.
    wastwater likes this.
  11. Allyson

    Allyson *****

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    here is another new article on POTs too

    http://www.jaapa.com/a-46-year-old-...static-tachycardia-syndrome/article/290779/2/

    intenesly dislike the opening statement - Pots occurs in anxious women!!!!!
    maybe POTS causes symptoms onf anxiety - these symptoms only occur when we are upright or very hot which is what distingushes them form anxiety..

    you can commnet on the page ...just need to register if you are in any field of medicine, otherwise we are chasing up contacts to contact the autors dirctly about this.... and the deconditioninng theory that they support as well...plus ca change !!

    "Anxious " is a standard medical code for nutter btw - just in case "chronic" and "syndrome": don t convey that message well enough - I can foresee a name change - "chronic anxiety fatigue nuisance syndrome" - can we fit "crazy" and "woman" in there too somewhere?

    good health!
  12. Allyson

    Allyson *****

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    About 50% of people diagnosed with fibromyalgia may actually have Ehlers-Danlos Syndrome.


    What they don't have are doctors informed enough about EDS to properly diagnose them.


    May is Ehlers-Danlos Syndrome Awareness month! Spread the word!


    from EDS awareness page
  13. Allyson

    Allyson *****

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    and this is intereting too MishMash

    Neuromuscular properties of the thigh muscles in patients with Ehlers-Danlos syndrome.

    Gerrits KH, Voermans NC, de Haan A, van Engelen BG.

    Source
    ...
    Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, van der Boechorststraat 9, 1081 BT Amsterdam, The Netherlands. h.l.gerrits@vu.nl

    Abstract

    INTRODUCTION:

    Ehlers-Danlos syndrome (EDS), a connective tissue disorder, may lead to impaired contractile function of lower limb muscles.

    METHODS:

    To test this hypothesis and to understand the possible mechanisms involved, isometric function of the thigh muscles was investigated at different joint angles (30°, 60°, and 90° of knee flexion) in 7 tenascin-X (TNX)-deficient EDS patients.

    RESULTS:

    There was reduced maximal voluntary torque of the knee extensors (but not knee flexors) across all joint angles in the patients. Time to reach maximal rate of torque development was delayed, and voluntary activation capacity was reduced in patients compared with controls, particularly at 30°.

    CONCLUSIONS:

    EDS is associated with muscle weakness, most likely due to increased compliance of the series-elastic component of muscle tissue and failure of maximal voluntary muscle activation. Further research is required to understand the influence of reduced voluntary activation on the severe fatigue reported by EDS patients.

    cheers,
    Ally
  14. Allyson

    Allyson *****

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    sorry no date for this one either


    Janet Kopacz
    Light and electron microscopy of classical Ehlers-Danlos syndrome.

    de Almeida HL Jr, Bicca E, Rocha NM, de Castro LA.

    Source
    ...
    Federal and Catholic University of Pelotas and from EMBRAPA-CPA-CT, Pelotas, Brazil. hiramalmeidajr@hotmail.com

    Abstract

    A 12-year-old boy with difficulty in wound healing and abnormal scars since early childhood was examined. Light microscopy showed loose and disperse dermal collagen with rare bundles, and fibroblasts show an irregular morphology. The fibrous sheath of hair presented a normal parallel distribution of the collagen fibers with normal spindle-shaped fibroblasts. Transmission electron microscopy also found disorganized collagen fibers, which were seen in a same field in longitudinal and cross sections. With high magnifications, an amorphous substance was seen near to loose collagen fibers, which showed variable diameters in cross sections. Scanning electron microscopy of the dermis showed disorganized collagen fibers and with higher magnification, important collagen disarrangement was observed with isolated and crossed-over fibers.
  15. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hey, Allyson, you have 633 replies for this thread. Maybe that's a record. What did you win?
    :thumbsup:
    Allyson likes this.
  16. Allyson

    Allyson *****

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    Hey SHerlock !

    thank - you .

    yes 633 replies and over 18,000 hits !

    I think it may indeed be a record.

    But it is not my prize - thanks are due to the researchers who discovered the missing link between EDS and ME and shared their knowledge

    Thanks also to the many poeple who have replied and shared their experiences, their doubts, their time, their confirmations making it a robust and open argument

    Thanks to the people who opened their minds to allow in a new possiblility and check their symptoms in the light of new knowledge.

    While it is ot the answer for everyone at least 30 PEOPLE have now had positive EDS diagnoses thanks to this and other postings on the topic - many more are awaiting appts with knowledgeable specialist to confirm their feelings.

    Many more already HAD been diagnosed EDS but hadnot made the link with ME/cfs so ther full range of symptoms was not incorporated.

    The PRIZE?

    In dreamland...... research leading to a cure or safe long-term efective treatment allowing us to live an actual life.

    In real terms - I would like the topic to be moved from miscellaneous to a more prominent permanent positiion on the forum if that is possible.

    And for more people to give the theory the due consideration it deserves before dismissing it out of hand.

    Thanks again to my wonderful supportive docs and everyone who has so kindly contributed feedback , useful links and information and arguments for and against.

    cheers,


    Ally

    And thanks to eveyone for putting up with my dyspraxic typing - believe it or not I DO edit for errors but many persist and each post and edit takes a lot of time and energy ; i am so embarrassed when i read them back but some i cannot corrct and some I do not have time or energy to keep correcting - my corrections also need correction!

    I was so glad to find out it is a dyspraxia and symptom of EDS that i can blame ( no arguments accepted on that point. lol)
    .
    Sherlock likes this.
  17. Allyson

    Allyson *****

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    another EDS aritcle

    Neuromuscular properties of the thigh muscles in patients with Ehlers-Danlos syndrome.

    Gerrits KH, Voermans NC, de Haan A, van Engelen BG.

    Source
    ...
    Research Institute MOVE, Faculty of Human Movement Sciences, VU University Amsterdam, van der Boechorststraat 9, 1081 BT Amsterdam, The Netherlands. h.l.gerrits@vu.nl

    Abstract

    INTRODUCTION:

    Ehlers-Danlos syndrome (EDS), a connective tissue disorder, may lead to impaired contractile function of lower limb muscles.

    METHODS:

    To test this hypothesis and to understand the possible mechanisms involved, isometric function of the thigh muscles was investigated at different joint angles (30°, 60°, and 90° of knee flexion) in 7 tenascin-X (TNX)-deficient EDS patients.

    RESULTS:

    There was reduced maximal voluntary torque of the knee extensors (but not knee flexors) across all joint angles in the patients. Time to reach maximal rate of torque development was delayed, and voluntary activation capacity was reduced in patients compared with controls, particularly at 30°.

    CONCLUSIONS:

    EDS is associated with muscle weakness, most likely due to increased compliance of the series-elastic component of muscle tissue and failure of maximal voluntary muscle activation. Further research is required to understand the influence of reduced voluntary activation on the severe fatigue reported by EDS patients.



    Ally
  18. Allyson

    Allyson *****

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    I saw the geneticist - at Royal Melbourne Hopital Australia genetics clinic today.

     

    He was great - a lovely guy and really thorough and

    interested; he was interested in OI/POTS too and would be happy to

    see others with it.
     

    genetic testing is not up to fine enough distinction yet - he would have to test me for many many different genes at

    present at that is not practical.

     

    However he says things are moving very fast and testing should be availiable in a couple of years.

     

    He says IM Vitamin B 12 injections will help because, like vitamin C, Vit B 12 i s a

    co-factor in forming connective tissue.<


    He also suggested trying chondriatin suphate and glycosamino glycans(sp?) for about a month - if they do

    not help in that time then they are not worth pursuing - i have never taken

    them but wil start - and the lycopene I am taking - he said yes, similar

    concept.

     

    He listened to all my symptoms - gastric reflux ,TMJ and RSI

    were all classic, as were skin tags, easy bruising, slow wound healing, strange

    scars petechiaie and the seasonal bilateral red raised rash I get on my upper

    arms in winter too - called Keratosis Pilaris.

     

    He took a full family history - also asked

    about dental crowding which i had forgotten about - most of our family needed

    extensive dental work as kids - many teeth removed and orthodontics to

    straighten remaining teeth.

     
    He alo agreed there can be an EDS look in the face - as with most CTDs apparently connected to palate shape - and was aware of the Perth Face Space project mapping faces for CTDs and genetic conditions.


    He says the MTHFKR gene test is good for predicting

    thromboses but apart from that things are still a bit nebulous with it.<BR>


    One thing I have noted from the chat pages is that with EDs so far with a

    lot of doctors the pysical symtoms seem to better documented and taken more

    seriously than the invisible ones like debilitating "fatigue" and crashes;

    hopefully that will change with increased awareness ... and more

    POTS/OI research. (He was interested in them though and agreed the blood vessel

    may not get enough structural support to work properly - the same reaosn

    petechiae and esay bruising happen from the smaller vessels) .

    So all in all it was very worthwhile from my point of view.

    It is free as it is a public hopital and afiliated with Melbourne Univerity so top level of research; but there is a 3 month wait for appts so get referrals from a GP in quickly if you plan to gois my advice.

    The more people they see the more chance there is of research and treatment.
  19. Allyson

    Allyson *****

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    For those interested in EDS 4 - or studying the geneitcs

    Vascular Ehlers-Danlos syndrome mutations in type III collagen differently stall the triple helical folding.

    Mizuno K, Boudko S, Engel J, Bachinger HP.

    Source
    ...
    Shriners Hospital for Children, United States;

    Abstract

    Vascular Ehlers-Danlos syndrome (EDS) type IV is the most severe form of EDS. In many cases, the disease is caused by a point mutation of Gly in type III collagen. A slower folding of the collagen helix is a potential cause for overmodifications. However, little is known about the rate of folding of type III collagen in patients with EDS. In order to understand the molecular mechanism of the effect of mutations a system was developed for bacterial production of homotrimeric model polypeptides. The C-terminal quarter, 252 residues, of the natural human type III collagen was attached to (GPP)7 with the type XIX collagen trimerization domain (NC2). The natural collagen domain forms a triple helical structure without 4-hydroxylation of proline at low temperature. At 33 °C, the natural collagenous part is denatured, but the C-terminal (GPP)7-NC2 remains intact. Switching to a low temperature triggers the folding of the type III collagen domain in a zipper-like fashion that resembles the natural process. We used this system for the two known EDS mutations (Gly-to-Val) in the middle at G910 and at the C-terminus at G1018. In addition, wild-type and Gly-to-Ala mutants were made. The mutations significantly slow down the overall rate of triple helix formation. The effect of the Gly-to-Val mutation is much more severe compared with Gly-to-Ala. This is the first report on the folding of collagen with EDS mutations, which demonstrates local delays in the triple helix propagation around the mutated residue.

    KEYWORDS:

    Collagen, Connective tissue, Ehlers-Danlos Syndrome, Mutant, Prolyl Isomerase, Protein folding, glycine mutations, type III collagenSee More
    Like · · Share · 3 hours ago ·
  20. Allyson

    Allyson *****

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