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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 *****

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  2. VeganMonkey

    VeganMonkey Senior Member

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    That's interesting Allyson as I have a low body temperature that I can't seem to get normal (36.5 Celcius on average) and always a low blood pressure. That's why hot weather works so well for me, but sadly warm weather is rare where I live. I feel awful when temperatures goes below 20, and much better when it get above 25. 30 seems the ideal temperature for me. But above high 30s feels awful again.
     
    Allyson likes this.
  3. Allyson

    Allyson *****

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    yes pretty much the same for me VM though I am more comfortable at 24 degrees; cnnot tolerate extreme heat - say over 28 I get uncomfortable - or the cold !


    cheers

    EDS conference confirmed speakers USA 2013 http://www.ednf.org/index.php?option=com_content&task=view&id=2284&Itemid=88889294
     
  4. Allyson

    Allyson *****

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  5. Allyson

    Allyson *****

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    Jessica Ann Christian
    Hi there! I am going to make a documentary about EDS and POTS! And YOU, yes YOU could be in it! :O All you need is to film yourself (with a webcam or nicer camera if you have one) answering some questions!

    If you want to be a part of this, please email me at jessicach11@yahoo.com with "EDS/POTS documentary participant" as the subject, and I will send you a PDF with instructions and the questions! (You can decide then if you're truly in or out). I could use as many participants as possible! Men and women! Boys and girls! All ages! Ask your kids these questions!

    Deadline for all videos to be in won't be for a couple of MONTHS, so email me now, get the instructions, and you'll have plenty of time to make your video! Thank you!
     
  6. Allyson

    Allyson *****

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    on fb from the
    Ehlers Danlos Syndrome Awareness Page
    Do you suffer from Chronic Pain?
    Have you been told or do you feel you have fibromyalgia?
    Easy or unexplained bruising?
    IBS, reflux or any other gastrointestinal issues?
    Fragile skin that cuts or tears easy?
    ... poor or slow wound healing?
    "Brain fog" or trouble thinking?
    Chronic Fatigue?
    Problems with balance?
    Are you the "clumsy one?"
    Do you injure easily?
    Dislocations or Fractures?
    Have you heard of
    Ehlers Danlos Syndrome?\

    this EDS page is posting excellent little comic style memes o re-post on fb to spread awareness in a light hearted manner - a great idea IMO
     
  7. VeganMonkey

    VeganMonkey Senior Member

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    My specialist is going to find an EDS specialist for me :) he has one other patient with EDS so he is going to ask her who it is. I'm glad he didn't wave it off.
     
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  8. Allyson

    Allyson *****

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    Is that Don Lewis VM?
     
  9. VeganMonkey

    VeganMonkey Senior Member

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  10. Allyson

    Allyson *****

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    A good man!

    Please let us know the outcome V
     
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  11. Allyson

    Allyson *****

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  12. Allyson

    Allyson *****

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    Hi Sushi, i FOUND this quote you may be interested in; hope thngs are going well for you.

    More than 1.5 million people around the world have Ehlers-Danlos syndrome (EDS). Someone with EDS is born at least every half hour, and many won’t know what’s wrong with them until it's too late for them to be helped. EDS occurs in between one in 2,500 and one in 5,000 men and women, of every race and ethnicity. EDS was named less than 100 years ago, and it remains largely unknown. Recent evidence indicates it may be one of the most under-diagnosed disorders, because there is no cure and many doctors consider EDS too rare for anyone to have. They fail to see that diagnosis is important, not just in accurately assessing how many have EDS, but in getting help to their patients for the many problems known to be caused by EDS.

    Ehlers-Danlos syndrome is a group of disorders. Each type of EDS is defined as a distinct genetic problem in making or using one of the types of collagen. Collagen is used by the body to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched, but not past its limit, and then is safely returned to normal. WIth badly built or processed collagen, some of the soft tissue can be pulled further than is safe, causing damage. Collagen is the body's most abundant protein and can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on.

    Vascular Type EDS is particularly destructive because of potential arterial or organ rupture; life expectancy is shortened with a majority of individuals living only into their forties. Arterial or intestinal rupture commonly presents as acute abdominal or flank pain that can be diffuse or localized. Spontaneous arterial rupture is most likely to occur in a person’s twenties or thirties, but can occur at any point in life. Cerebral arterial rupture may present with altered mental status and be mistaken for drug overdose. Mid-size arteries are commonly involved. Arterial, intestinal, or uterine fragility or rupture usually arise in EDS Vascular type, but should be investigated for any EDS type.

    There is a very wide range of symptoms because of how widespread in the body collagen is, and it is still unclear why one collagen defect can be expressed so differently in people, even in the same family. EDS can cause systemic weakness and instability throughout the body, resulting in many and unexpected effects. Some can be seen, but not all; EDS is largely invisible. Pain, for instance, can be widespread—collagen makes up the fascia, the tissue sheet that holds everything together and wraps around your entire body—but the pain will not show up in MRIs or X-rays, and will be probably be out-of-proportion to any findings. While EDS is not curable, many symptoms can be prevented or treated as they arise: joint hypermobility (loose or unstable joints that slip or dislocate); early osteoarthritis; tissue fragility, skin that tears and bruises easily, blood vessels and internal organs such as intestines that can rupture easily; eye problems and gum disease; spine problems that may also involve the cerebellum and cerebrospinal fluid pressure.

    Collagen is found throughout the body. Ehlers-Danlos syndromes come down to a structural problem. An analogy. If you build a house with bad materials, say weak wood or cheap nails, you know you'll have problems. Some problems are more likely to show up than others, but because the bad materials were used everywhere and aren't necessarily visible, you can be surprised by a problem. So the problems resulting from being built out of a protein that doesn't behave the way it should can be widespread, in a wide range of severities, and maybe even show up in places you wouldn't think are related until it occurs to you that collagen is used there, too.

    Each doctor you see is going to look at things differently. Endocrinologists see hormones as the problem, or CFS. Rheumatologists in the US think fibromyalgia's the problem. Surgeons see weaknesses that need surgery. And if none of them are remembering that EDS is the root cause, and maybe their solution won't work in that environment of your body, they may be inappropriately treating you. There are some medical specialists, and more with each generation of doctors, but the best suggestion for the longterm health of someone with EDS is to learn everything you can about EDS and what/how it affects you, so you can educate those doctors and nurses who are willing to admit they don't know everything and are willing to learn.

    More than a quarter century of experience, free information and resources from Ehlers-Danlos National Foundation can be found at www.ednf.org
    [​IMG]
    or reaching the foundation on Facebook. "So You Think You May Have EDS?" is an introduction to EDS written by EDNF members at http://bit.ly/Olw4L
    [​IMG]
    , where you can also discover many links to professional and patient publications and web pages through the "EDS Guides" and "EDS Knowledge" menus on the left side, throughout the web site. EDNF holds a national conference, usually each year.


    [Written by Mark C. Martino/EDSerMark - sharing welcomed, but please include EDNF when doing so]
     
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  13. Allyson

    Allyson *****

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    I missed this one sorry Tania - fascinating!

    Read a good analogy the other day - if veins are a bit like garden hoses ours are like rubber bands - makes it visual.

    Also as to why blood supply to the brain is so important and anytime with reduced blood supply can be so damaging:

    #BrainyFactFriday
    The brain is 2% of our body weight, but gets 20% of the blood pumped from the heart & uses 20% of oxygen carried in the bloodstream
     
  14. merylg

    merylg Senior Member

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  15. sandgroper

    sandgroper

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    Yes... i was like you. I liked doing yoga and being flexible. Pushed myself to keep doing yoga till I could
    not do it anymore.

    As for treatment for EDS - those with EDS only are usually referred to pain specialists and physios.
    One thing i think is important for me is treatment of the myofacial pain associated with EDS. Unfortunately
    I am not well enough to get to have this or to go to a knowledgeable physio. Getting the biomechanics seen to can help. For example I started having trouble with my knees but the problem was with my flat feet and knees improved with good orthotics and better shoes.

    There are many comorbid issues with EDS and they have different treatments. I have diverticular disease and I am on a diet for that and I appear tohave food intolerance that I am working on. I also have the diverticular disease that often goes with EDS and i need special dental work.

    EDS is a multi system illness and incurable but various aspects have treatment. One of the most disabling conditons for me is some form of dysautonomia which appears to be POTS in my case. I has an unusual and severe presentation. There are number of strategies for managing that.

    The problem with having ME is that the effort to manage the other conditions is often beyond me. There are anumber of FB groups for people with several conditions that might be helpful for you.
     
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  16. VeganMonkey

    VeganMonkey Senior Member

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    I am in a few groups on FB, it's good to read their posts but also confusing! So many differen experiences by people and all have different symptoms!
     
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  17. Allyson

    Allyson *****

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    yes but that broad range of symptoms is because it is a connective tissue disease VM - the building blocks of our body so it affects evry part of your body - or can do.

    blood vessels , blood, lymph, tendons, muscle fascia, cartiledge, .....it is amazing we can stand up... wait,..some of us can't !

    But seriously, this thoery is the only one that comes close to explaining all our symptoms; nothing else explains why extreme heat is guaranteed to make us ill and why we suffer such bad jet-lag...and that is just a start...nothing else expleins photophobia and hyperacousia, but this ilness - EDS - does perfectly. - the flight or fight response form the elevated adrenalin levels as we attempt to vasoconstrict.
    Sonethine else I read the other day was tha when thee frontal lobe is deprived of blood supply we get angry( its role is to suppress anti social behaviours) ... ever had a melt- down in a supermarket queue or a bank when you had to queue for ages.... it may explain some road rage too?? Sitting in a stillposition - worse in a hot car - is really bad for us and why a drive can wipe us out ... odd as we are not doing much really , just sitting there.
     
  18. Allyson

    Allyson *****

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    Hmmm , sounds like text-book EDS 3 to me from whati hae read so far Vegan sadly... at least you know what it is now though if true.
     
  19. VeganMonkey

    VeganMonkey Senior Member

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    I'm going to get this checked out soon! I am not looking forward to more medical stuff (last year I had several months where I had to do something medical weekly, so exhausting) but it's worth it.
     
    merylg likes this.
  20. Allyson

    Allyson *****

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    This in form MishMash... thanks Mish.

    Thanks for that Mish Mash;

    Yes the symptoms all seem so similar and SO many ME/cfs/fibro people have contacted me saying they have hypermmobility, positive Gorlins' sign or both ( personally and or in the family) that I think this theory has a lot of merit.

    I have contacted EDNF foundation in the past and they are always happy for their posts to be shared and re- posted which is kind of then as they are keen do dissiminate knowledge about theses conditions. ( Mark Martino is the author of many of them... thanks indeed Mark for your generosity.)



    Thanks again,


    Best,
    Ally
     

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