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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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    BTW Justy yer that wikki site is inadequate on EDS; they do not fall into the 4 neat categories,and lot s of people dont have all the symtoms listed; i guess that was an attempt to categorise things.
    taniaaust1 likes this.
  2. Allyson

    Allyson *****

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    Thanks for the great reply Mish mash. if you dont mind i will email it to my specialist - with no ID ?

    Klonazepam is also a drug that expands blood volume a/c to Dr Cheney and it always helps me if i take it when i cannot sleep.
    yes i agreee all our other membranes are likely faulty too including all our capillaries so the flow-on effects of damage is likely to be vast and comples- not to mention damage to the brain from inadequate blood supply ( remember all those years of pushing through severe symptoms for years with caffeine as a stimulant?)
    MishMash likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    wow.. I get the Neo B12 ampules and have read the inner sheet on at least couple of occassions and didnt see that. I guess that just shows just how much my brain is missing. Thanks.
    Pacing may not necessarily include laying down (thou probably would be the case for those who have OI but not all CFS cases have OI). All pacing is ..is regulation of activities and keeping ones activities at a level you can handle without triggering more symptoms (nothing about how rest is done)...
    Some do do their rest periods sitting, while others have to lay between activities while for others who arent so sick, pacing may be a case of not even stopping all activity at all but rather varying between high intensity and low intensity activity.
    MishMash likes this.
  4. Allyson

    Allyson *****

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    I just had a rquest for treatment recommendations so here they are for enyone interested,
    Actual;y i have to go to the docs so will post brief outline here then details later

    the basic principle is to avoid being upright when you are vasodilated
    as
    when you have peripheral vasodilation there is even less blood avaliable for your brain and heart
    eg in the heat
    after exercise
    also
    after eating - blood has gone to your stomach so less around for your brain so lie down then\

    so do any exercise ( exercise helps expand blood volume) in the shortest time possible and avoid standing up after it
    recumbant exercise sucha s pilates is best
    aqua is good
    avoid walking--- you are up for a long time for minimal exercise benefit

    other treatments include electroylte drinks high salt diet
    then things like florinef - did not work with me, midrodine
    andn liqorice root expands blood volume

    i like the idea of high protein diet - would helpmake collagen and always makes me feel better next day
    More details soon, thanks for all the interest and useful replies,
    Ally
    MishMash likes this.
  5. Allyson

    Allyson *****

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    tania it is under adverse effetcts heading

    ccf ....[has] "been recorded possibly as a reult of an increasein blood volume induced by the drug [ ie vitamin b12]"
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  6. taniaaust1

    taniaaust1 Senior Member

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    re: exercise lying down

    I have trouble with exercise when laying down too.. my muscles burn out just as easily if placed under strain. My issue also seems to be coming from mitochrondria.

    I used to crash from doing horizonal yoga poses.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson,

    Does your doc have any other suggestions that might be "curative" other than a high protein diet and leg strengthening?

    It is good to know what to avoid and things that might help symptoms, but things that might heal are even more valuable.

    Thanks,
    Sushi
    Allyson likes this.
  8. Allyson

    Allyson *****

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    high protein is my feeling; it laaways seems to help

    other thins were anything to avoid extra vasodilation
    ie avoid
    heat
    airplanes - altitude adn depressurisation causes imense vasdilatation
    standing up any time you are vasodilated

    take liqorice froot
    horse chestnut - strenghthens viens

    being in water is good if not too hot eg spa pool bath....as the pressure forces lymphatic fluid back into the venous system
    likewise lymphatic massage helps - ie light pressure as opposed to deep tissue massage
    high salt diet
    i ma about to start on midrodine
    that is all i can think of
    o i also like light pressure compression clothis esp on the abdo men eg lycra tops and leotard type things - they seem to help. calf length compression stocking di not help me.
    the main thing that helps me is lying down

    I would love it if othere could observe themselves and see if lying down is important for them or not
    thanks
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I've found most of these helpful though I haven't noticed much difference with a high protein diet, (and midodrine was a disaster for me) but none of it seems to be "curative" for me--just helps manage symptoms.

    Lying down is certainly helpful but not a practical way to live life! I hope some day they discover methods that actually deal with the causes. I've always had some degree of OI (vision blacking out even as a child) but I wasn't "sick." So there must be other factors than the genetic fact of EDs.

    Sushi
    Allyson likes this.
  10. Allyson

    Allyson *****

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    Hi Sushie, no I dont think there is any cure alas and mamagement is the best we can do.

    Nor do I think lying down is a good way to live but I seem to have no choice.
    (And a light portable recumbant wheelchair would help me get out more for some outings at least)

    Any time i get up it makes me ill on subsequent days ...so then I have to lie down anyway and feel ill to boot !
    but it does help to at least know the cause
    eg why the heat affects us so badly,ditto for flying
    and why sitting in the pool and massage help somewhat
    and to avoid standing after exercise or rfor too long....eg why we hate queues ...mystery solved in my opinion.
    Upto medical researchersw now to fidn the miracle cure .. who knows, maybe stem cell tranplants will help us.
    I see they have created insulin produing cells for type on e diabetiecs so medical breakthroughs are aways possible.

    the similarities between nad ME crashand a ahngover strike me a significatn and this might expalin why as hangovers are thought to be due to "dehydration" to the brain too.

    Living in hope !
    MishMash likes this.
  11. camas

    camas Senior Member

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    Interesting that you mention Horse Chestnut because the homeopathic form (Aesculus hippocastanum) is one of the few remedies my D.O. has prescribed that I have found helpful.
    Allyson likes this.
  12. Allyson

    Allyson *****

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    the interesting thing is this condition EDS would explain a few things that are otherwise mysterious about ME
    such as why aiplanes make us so ill- vasodilation due to decrease air pressure PLUS sitting upright for a long time
    and why we are heat intolerant - vasodilation plus peripheral dilatation to try to cool you down = less blood for the brain and heart
    and possible why we drink and pee so much - increased tirs a s the brain signals it is low on fluid as not enough blood is reaching it.
    when i wak it hte morning my face is puffy and after baing up a whole day my face is normal but day my feet are swollen
    I think this swelling of the feet and ankes is part of the achey feeling we have - i often feel like I need a foot and calf massage, and elevate my feet on a pillow
    the latter is not wise to do regularly apparently as it signals that your blood pressusre is high and therefore causes a futher drop in blood pressue
    MishMash likes this.
  13. Allyson

    Allyson *****

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    few further manaement thoughts
    if you lie down after meals , even on ood days, you would do less damae as there is less blood available at thoswe times
    also, on well days, if you lie down as much as possible, eg when openin your mail of making phone calls - i e lie instead of sitting or standing, this may decrease lenght and intensity of crashes on subsequent days.
    I don t kno wis sittin is any better than standin; lare veins inthe abdomen and chest etc are still affected when you are sitting; would love someone to study these for correlations
  14. Allyson

    Allyson *****

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    And also docs mention calf strenhtening exsercise but I also like abdo strenghtenin exercises sucha s pilates as the veins inthe abdo may be more important than thos in the legs as they are larger still.
  15. Allyson

    Allyson *****

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    Sushi, can you tell me what happened when you took midrodine please as I am about to try it and would like to avoid any problems or know what to look out for; fludrocort was a disaster for me as was dexamphetamine - caused a high then a crash - so I want ot limit problems with midrodine if possible; or if any one else has any experience of it that would be appreciated too; thanks in advance for any thoughts.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Looking back, I'd guess my BP spiked but I didn't know it at the time. I was driving home from errands when suddenly I got dizzy and felt like I was going to pass out. The whole episode lasted about 8 hours (more or less the half-life of midodrine) and during the whole time I was holding the phone debating whether to call 911.

    I had had no symptoms from it before this happened about 2 weeks in and I was taking a low dose.

    It has happened to others, so just monitor your response--but most take it with no problems. However, most people get a sensation like an itchy scalp or bugs crawling on their scalp. This doesn't seem to be anything more than annoying.

    Hope it works for you.

    Sushi
    Allyson likes this.
  17. MishMash

    MishMash *****

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    Allyson,

    Your EDS seems very mechanical. Your body is simply dominated by gravity. I'm terribly sorry you have to lie down constantly.

    Your post did get me to thinking about a controversal treatment thought up by an Italian neurologist Zamboni. Granted, it's for MS, but his premise is the same as EDS. Basically, the brains of MS patients are not getting enough circulation.

    This leads to the lesions forming, and further effects. His treatment involves inserting stents into the arteries supplying the brain; his theory being that there is an unnatural narrowing there. The unclogging reverses the effects of MS.

    As is the case for any new drastic treatment, there are MS patients who have been virtually cured, while almost all neurologists say this man is a walking horror show; stay away!.

    My belief is there is probably merit to his theory, and MS patients do suffer from an EDS-like problem in the brain.

    There are numerous before-and-after Youtube videos showing MS patients who are vastly improved from the procedure. Quite interesting (seems believable).

    Allyson and merylg like this.
  18. MishMash

    MishMash *****

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    I think fludrocort is the same thing as Florinef. I had a very bad reaction too. Many people have benefitted from it. And dexadrine, ritalin, adderal, modafinil, all of those really make me sick. Right idea by the doctors, but too simplistic. The body is going to decide on its own terms how it's going to circulate the blood. I wish they would stop offering every opportuntiy though..
    Allyson likes this.
  19. Allyson

    Allyson *****

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    thanks indeed for that Mish Mash, its funny I was thinking that very thing this morning, that maybe a stent would help; i wake up with mild diffuse headaches....so mild that I told the doc i did not have headaches...then realised that i in fact have them nearly al the time.
    I had no idea that had been done for MS. The neurologist i saw I an MS specialist and he queried low CS Fluid.

    But i did not realise my ME seemed so mechanical ( ie time spent upright causes crashes) until the BP specialist pointed out the correlation with being upright and I started to observe it. So I wondered if other people could also please observe that and see if it is a common thing for many of us; like many ME symptoms you may not see any correlation til someone else points it out.
    yesterday I was in bed most of hte day, then feelin better in the evening went for a stroll. The worst thing you can do I know (slow walkin - long time upright, not much circulation) but it was such a pleasant evening; sure enough I woke up this morning with the headache and semi-crashed....brain fog etc.

    as another example I thought I had a perfume allergy as every time ai put on perfume I was sick the next day; then someone pointed out that I only put on perfume when I was going out and indeed it was the up and out that was makin me ill, not the perfume; likewise for gluten - I only ate it when I went out and a few other things.
    MishMash likes this.
  20. Allyson

    Allyson *****

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    I should add that I have had ME for over 20 years and yet only now see the correlation between being upright and symptoms safter it has been pointed out to me.

    Is there anyone who does not lie down - or stay lying down - as first automatc tratment for a crash?
    We tend to think of our symptoms as being cause d by exertion and yet almost anythign that requires exertion requires and upright posture first, so it is possible that it is the upright posture causing the probems , not the exertion.

    However exertion would then further exacerbate things as it requires more blood for the muscles and so even less blood is available for the brain and heart.

    The fact that Dr Cheney and othere have postulated low blood volume makes this theory even more credible, it just gives and esplanation for the low blood volume.(ie EDS- stretchy veins)

    So we may not suffer fatigue at all but
    1 a desire to lie down to get more blood to the brain ( pre-Crash )
    2 need to lie down post crash just as someone with a hanover needs to lie down and for perhaps the same reason.

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