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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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    Yes I agree Mish mash; I thought the 2011 consensu document renamed csf as ME.
    CLuster outbreaks of breast cancer have occured - eg in the ABC building in Melbourne recently but that does not mean breast cancer is caused by a virus.
    Also there are cluster outbreaks of leukemia and other after every nuclear power plant disaster and in that case we know the cause ..and it is not a virus. Just because two things occur at the soem time it does not incdicate that one caused the other.

    As they say, in hot weather icecream makers produce more icecream, but the hot weather does not cause them to engage in this behaviour....consumer demand drives it.
    MishMash likes this.
  2. Allyson

    Allyson *****

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    Thanks for the conference note Ahimsa; inoted another intersting thing about laptops. well two actually.

    1. On the couch I tire more thant I do in bed yet I amlying down at about the same angle. I realised thast on the bed I have doona and blankets between me and the laptop so I am not getting its direct heat on my abdomen, whereas on the couch I rest it on my body AND IT GENERATES A LOT OF HEAT.
    So much so that when I rest it on a foam cushion the entire cushion become shot within an hour or so.

    So the extra heat to hte abdo would be like having a hot meal and dilate the blood vessels in the abdomen.
    From now on I rest the laptop on pillow all the time....yes it seems to b e making a difference.

    2. Also I take care to avoid getting too hot; eg if pottering round the house and notice I am getting warm, take off the cardy and extra clothing immediately ( rather than waithing til I am too hot) - and if necessary cool down in front of a fan - to save getting hot and thus prevent venous and peripheral dilatation and the subsequent problems they cause.
  3. Allyson

    Allyson *****

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    Also the fact that ME is prevalent in medical personell is put forward as an argument that it is somehow a transmissable disease.
    Another explanation however could be that people with ME and /or EDS choose to go into the medical profession.
    One again, co-incidencedoes not indicate causality.

    Reasons could include the fact that there is shift work there, that you are often mobile rather thatn seated at a desk or standing still ...and there may be the subconsious knowledge that there is something medically wrong with you and you are seeking to resolve it.

    I know i left severlal good well paying jobs for no real reason and looking back they were all sedentary. And I have never been able to stay long in a sedentary job. I would rather be moving than staying still - all sbconscious as I had never been aware of it til now.
    MishMash likes this.
  4. Allyson

    Allyson *****

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    ai
    I must say I am a bit offended by this post: being "diagnosed" by someone who as never met me - a total stranger on another continent - on the basis of my few posts here is really rather insulting to both me and my doctors.

    The point of this thread is to open discussion on this possible new angle on ME in order to develop awareness of the possiblities therein and seek effective treatments ...not seeking medical opinion on my condition.
    MishMash likes this.
  5. Allyson

    Allyson *****

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    Yes I agree with the fact that you could have both.

    However I think the symptoms of EDS are so vast and are yet to be described clarified and categorized adequately....there is a lot of research needed into it.

    Apparently it is widely underdiagnosed, to the extent that the diagnosed people are " the tip of the iceberg".
  6. Allyson

    Allyson *****

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    Adrenaline

    The body's reponse to the lack of blood to the brain is an dinstant releast of adrenaline: could this be behind the old theory that people with ME were " A- type personalities" as we are constanly exsposed to adrenaline any time we are upadn about.

    My heart beat was shown to go up when in the supermarket - standing, being unable to move very fast is tasing for us; I also dislike - nay dread - putting petrol in the car, andything that involves standing still for any lenght of time.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    There has really been a lot of research into EDs, though you may not have found it yet. Yes, it is under-diagnosed but a lot is known about it and it is looked at by many ME specialists who realize that a significant proportion of their patients have EDs. They have been looking at these connections for a long time.

    I seem to get an invitation to an EDs conference several times a year.

    Sushi
  8. Allyson

    Allyson *****

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    Thanks Sushi,
    I mean there is still alot of research to do into it.
    would love it if you could post details for the conferences as you get them for us please.
    I forget if it was you or Ahimso who said ... how come I didnt notice symptoms til I was an adult.
    I remember I always disliked the heat but never knew why.
    Also, how so you know how you feel is not normal if you have always felt like that..
    and hormone changes can alter the blood vessels too I note so puberty may cause some changes.
    finally, there is a continuum as Mish mash rightly points out so some peopl may have mild or no symptoms until some precipitating event I am guessing.

    Thanks again everyone for the terrific and really useful feedback and info so far which has been so helpful.
    Ally
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    Here is an announcement of a conference next year: http://www.ednf.org/

    And a paste-in from their home page:
    Public Website Access Access to this website is freely open to the public.

    For EDNF's membership center, including downloadable literature and store, click here.

    So You Think You Might Have EDS?This valuable free PDF was produced by EDNF members to guide you through the many aspects of Ehlers-Danlos syndrome.

    EDNF does not offer diagnosis or recommend either treatment options or physicians, but the EDNF HelpLine volunteers may be able answer some of your general questions.

    Membership Makes a DifferenceMembership gives you access to our message boardsand newsletters and makes a difference for others with EDS. For more about memberships, click here.

    About EDS

    Medical Professionals
    • EDS Overview
      Explore the different types of Ehlers-Danlos syndrome.
    • Resources
      Read EDNF literature, browse journal articles, and more.

    About EDNF
    Allyson likes this.
  10. ukxmrv

    ukxmrv Senior Member

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    Allyson, I was genuine in my post and simply do not see what there is to be offended about. People get disdiagnosed everyday. I'd be very happy to be diagnosed with something else if it fitted all my symptoms. I really am at a loss to understand what has caused offence and I'm certainly not interested in giving you medical advice. That's between you and your doctor. I'd rather concentrate on myself and those close to me.

    You either have ME, CFS, EDS or a mixture or something else. I have no idea what you have. I'm certainly not interested in diagnosing you or what you have. I have given you no medical advice at all.

    If your doctor is misdiagnosing ME or CFS and it is really EDS then it would help others in your area if he was given the right information. If you are not interested in this it doesn't bother me.

    As far as I can see you are not "opening a new angle on ME" by claiming that ME is EDS. That could be considered provocative as it challenges everyones diagnosis who has ME. People are sure to comment.

    If you want to talk about your own diagnosis of ME and then the subsequent one of EDS that's really personal though and will open the can of words to ask if the first was a misdiagnosis. That's why I've asked you if EDS covers all your symptoms. I'm trying to understand you.

    Maybe you could consider changing your heading if you are unhappy with people tackling the question in it. As I have said you have given no evidence that EDS could have caused the well documented outbreaks of ME in the 20th Century. If you start a topic that claims that ME could really be EDS then people will ask for evidence, examine the evidence and comment on that. I'm at a bit of a loss to understand why you opened a topic with that heading, spoke about your own diagnosis, repeated things that doctors had told you and then got offended when someone asked questions to try and genuinly understand what it is you are saying.
  11. Allyson

    Allyson *****

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    It is not me that has made the claim but a professor at a major teaching hospital and university based on other medical conference papers

    I have not said I have presented evidence, I am relating my experience, wondering if others note the the same thing and asking for feedback

    as to whether ME only occurs as a result of a virus, there is no proof of this to date, and there is an entire website - me cfs forums - that seems to deal mainly with that topic, which is why I have posted this query here as I an not interested in that issue at the moment.
    MishMash likes this.
  12. ukxmrv

    ukxmrv Senior Member

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    Thanks for the kind reply Allyson.

    I hope that the Professor you mentioned will do some research and provide us with some evidence one day.

    I'd like to see lots more evidence on POTS, OI, EDS and how they fit into CFS and ME. I was really disappointed when so little mainstream notice was given of the Rowe paper all those years ago. So many of us could have been better helped if the research had been done.
    Allyson likes this.
  13. jonnyboy

    jonnyboy

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    I think it could be a pre-disposing factor in many like myself. I also think its hugely under-diagnosed.

    I have been ill with ME for about the last 22 months on the moderate/bad scale. Primarily my probs are autonomic thou. Anyway i decided to seek out some other docs trying to get help, and ended up seeing prof mathias at st mary's in london. I only had a consultation so far, but i went in there to talk about my autonomic probs to him. He did a brief physical exam, and got to me to do a few weird things with joints, and other things that seemed odd like touching the tip of the nose with my tongue. He said I did have EDS type 3, but only mildly.

    Incidentally I dont have joint pain now, never have done really and I've never thought of myself as hyper mobile, thou as a former 400m sprinter I am obviously flexible. I have had a long history of running injuries, nearly always joint and ligament/tendon type. I always assumed that I was just unlucky with sports injuries, and put it down in part to very slight biomechanical probs when running. Either way, looking back I think its now quite likely these were down to EDS and having "slack joints" for want of a better word.

    My point being, that even after looking up EDS when i first got ill, i never thought i was a candidate for having it. Therefore I would assume a lot of people with ME/CFS and with autonomic probs have it, and dont realise that they do. I only found out by accident really.

    I'm due to stay in the hospital for more testing at the end of Jan
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  14. MishMash

    MishMash *****

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    jonnyboy
    There are few famous American athletes who were known to have hyper-flexible joints. You would have to be an enthusiast of U.S. sports to care. For example, Sam Snead, winner of multiple major golf tournaments during the 1930s was extremely hyper-flexible. He was an excellent baseball player before becoming a golfer.

    But I don't know of any professional football players, hockey players, or boxers who have flexible joints. Their frames would not stand up. The hyper-flexible athletes tend to stick to speed or skill sports (tennis, basketball, track). Although, in high school I knew some wrestlers who were hyper-flexible, but that could be considered an advantage.

    The main point being: not all people who have hyper-flexibilty get OI or POTS. Or go on to get ME/CFS. Many folks stay completely healthy and happy with EDS. But in some people, it is a vulnerability to getting chronically fatiguing illness (whatever label one wants to put on it; I really don't think it matters).
    jonnyboy and Allyson like this.
  15. MishMash

    MishMash *****

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    I'm afraid Allyson is correct on this one. There is just as much evidence supporting EDS as a predisposing factor as "epidemics" causing ME or CFS or ME/CFS. The transmissible virus thing has not worked out. The "outbreak" proponents tried to tie their new condition to post-polio syndrome decades ago. But that's as far as it went.

    I am waiting for one example of a "well documented" outbreak of ME. The authors below say there have been 60 outbreaks. I would like to hear about one? The authors below, make declarative statements about the etiology of ME, but provide no citations. No proof.

    Why have these researchers claimed that the outbreaks were caused by "enteroviruses" and then blamed government conspiracy for not investigating/proving their hypothesis? There is absolutely no proof that whatever we have is caused by "brain inflammation". Or that that there is an ME that is caused by a polio-like organism. This seems to me to be very weak science.

    http://www.hfme.org/meoutbreakscause.htm

    later it says:

    /
    Allyson likes this.
  16. Allyson

    Allyson *****

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    Thanks yes xmrv, I am also hoping for research and have suggested some of course but it all takes time and money and that was why I posted here to try to get some unofficial feedback in the meantime that may also stimulate or inform future research.

    (Even if that is the cause for some of us there is still no cure yet.)

    I am glad to see some genuine and applied interest at least from a highly respected source which means that mainstream medical people are finally giving the issue respect and attention and not trivialising or "psychologising" it.
    merylg, MishMash and jonnyboy like this.
  17. Allyson

    Allyson *****

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    Hi Jonnyboy and thanks.
    Being able to touch your tongue to your nose is czlled Gorlin's sign and is a sign of the connective tissue disorder. about 20 per cent of my family can do it though I cannot. My mother could.

    Glad to hear they are putting you in hospital for more testing and I hope it goes well.
    Cheers,
    Ally
    jonnyboy likes this.
  18. Allyson

    Allyson *****

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    Sunday Barbeques

    In retrospect, one thing I always dreaded in my teen years and later was an afternoon barbeque.

    Sitting (still) in the hot sun drinking alcohol....what a nightmare now I look back on it, but it was the socilally accepted thing to do.

    I always used to dread them and feel terrible at and after them; l now know why.

    Of course I have never been able to tolerate much alcohol and now rarely touch it, but again in my teens it was what one did - usually I stuck to wine.
  19. ahimsa

    ahimsa Senior Member

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    This is a good tip to share. I always put something in between the laptop and my lap so that my lap does not get too hot. Right now I'm using a hardback book that's about the same size as the bottom of the laptop. I keep thinking maybe I should get a padded lap desk (see http://www.lapdesk.com/ OR http://gifts.barnesandnoble.com/u/Lap-Desks-Lapdesks/379000575/ ) but the book is working pretty well and it's free. :)
    Yes, I do the same thing. As you say, doing it before you get too hot is the key. I wear a tank top or t-shirt when I'm inside the house, even in the winter, and just add or remove a light jacket or sweater (zip up is easiest, pullovers are a pain).

    Also, taking off both shoes and socks after coming into the house is another way to keep cool -- bare feet on a cold floor really helps. Taking off and putting on layers is pretty essential for me.
  20. Sherrie

    Sherrie

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    I have no idea if I have EDS but I can touch my nose with my tongue. I just wanted to add to the hormonal changes etc

    When I was first really sick with ME/CFS, I think I had it mildly since having glandular fever 20 years ago but I didn't get really sick until bringing it out whilst on a health kick, dieting, doing weights etc

    Anyway, during that time I fell pregnant, about 5 to 6 weeks into my pregnancy I was weeding and hurt my lower back which then led to having severe back and hip problems for the remainder of my pregnancy. The physio I saw throughout my pregnancy had told me that it was caused by my pregnancy hormones loosening my ligaments too much. I also had severe snoring from 2-3 months until birth and I had severe intolerance to heat etc I couldn't handle hot drinks, hot food, showers etc one time I nearly passed out in a restaurant after being served some TOM YUM, just from the steam, I hadn't even started to try to eat it, I had to spend 15mins out side in the rain to cool down. I can remember being in Chinatown and trying to cross the road and nearly falling over because it felt like my leg just came out of the socket when I went to take a step. Even sitting at my computer desk would make me dizzy and I found I had to eat regular small meals to keep it in check.

    This all stopped the moment I had my daughter but the back/hip problems came back when my ME/CFS relapsed a few years later. Having said that my previous pregnancy 10 years prior to that one when I wasn't sick with ME/CFS was problem free and the best I'd ever felt because I didn't feel sick all the time like I did after glandular fever so that first pregnancy gave me relief from that.
    Allyson likes this.

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