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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. xrayspex

    xrayspex Senior Member

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    Allyson (I like Mish Mash Elvis Costello Aim is True reference) a question for you, you mentioned you had had a holter monitor and implied it was diagnostic of something relating to this.....what did they find out? I had one last year and they didnt tell me the results other than I am "fine" no heart problems. I found out after the fact they were assuming my complaint was about racing heart when it was really about oxygen hunger. They said my "palpitations" werent a problem, well I hadnt felt any significant palpitations then grrr seemed like an assumption on their part because of being female with "CFS". Anyway, I digress, I wouldnt think holter would be useful for stretchy vein problem diagnostics etc?
    I had a positive tilt table 15 yrs ago but the cardiologist last year dismissed that theory as not significant.

    I have had OTs/PTs tell me I am hypermobile in spots, causing some of the spine pain probably. I am short tho and don't look like classic EDS person.
    Allyson likes this.
  2. Sherrie

    Sherrie

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    When your blood pools in your abdomen is it a a firm bloat in your upper abdomen?

    I have had this for a couple of years, I cannot connect it to a particular type of food so I don't think it is food specific though I can bloat after a meal but also before a meal and I noticed my abdomen bloats up significantly when I am in the shower with an empty stomach again ruling out food. Standing and heat related?

    I do have heat intolerance but I also have untreated thyroid issues (goiter and now hashimoto) and heat intolerance is a symptom of hypothyroidism also.
    MishMash likes this.
  3. Sherrie

    Sherrie

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    I would be interested in your protocol, thanks :)
  4. taniaaust1

    taniaaust1 Senior Member

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    Greg Paige was able to go back to work this year (or it may of been last year) after many years of being disabled. So he's obviously doing much better. I really wonder if his condition just improved or if he in recent times found a better treatment for his OI (if Im remember correctly it was POTS).
  5. Sherrie

    Sherrie

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    Can connective tissue disorders cause blood noses? My son gets blood noses a lot especially when hot. When he was young he also used to dislocate his elbow a lot after his pop gave him a wizzy.
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  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I believe he makes accommodations though--sits mostly when singing etc.

    Sushi
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  7. MishMash

    MishMash *****

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    Let's not forget about one of the greatest rock bands ever-- the one that everybody loved to hate. (What true manly-man would ever admit to liking "Babe"?)

    Dennis DeYoung was a founding member of Styx. Holders of 12 top ten Billboard singles, sellers of over 50 albums. I saw them in concert two years ago, and the lip-synching was excellent! No, actually, it was a great concert even if much of it was prerecorded. Eighty percent of the crowd were over-40. The other 20% were glum-faced teenagers dragged along by their parents.

    DeYoung (the one with the 'stache, on the right) came down with CFS:

    [​IMG]
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  8. Allyson

    Allyson *****

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    Blood Noses and CTDs


    Hi Sherrie,
    yes I have read something about blood noses and CTDs but sorry i can t remember where or precisely what.

    If i find it again I will post it.

    I get frequent minor blood noses and have for many years - sometimes they stop for a while; as a child I got them fairly frquently.
  9. Allyson

    Allyson *****

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    No I don t think he has ever got back to normal Tania,sadly, and the Wiggles have just disbanded permanently.

    The book finished on an incclusive note I seem to recall.
  10. Allyson

    Allyson *****

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    Hiya Spex,
    thanks for the feedback.

    The halter monitor test was actually to check my PB to see if it was safe for me to take Midrodine, the vasoconstrictor.
    Most people's BP goes UP at night while they are asleep apparently. THough i wonder how reliable it is when you have a bloody halter monitor waking you up very half hour to ddo your BP all night !!!

    My BP was marginally too high at 127 systolic. (THough i do wonder how reliable it is when you have a bloody halter monitor waking you up very half hour to do your BP and beeping all night !!!)

    However the specialist looked at it and could tell me the time I had been iin the supermarket after leaving his office because my heart rate increased in that time.... he said supermarkets are ba for us as we are standing, noing slowly, trolley slows you down , then a queue at the end.

    I don t look like classic EDS either and am NOT bendy or flexible at all so diagnosis was based on symptoms and family history. there is a continuum s it were with some people having all the symptom while some just have stretchy viens and other symptoms resulting from that.
    I am looking forward to genetic testing to sort this issue in the future I hope.
    Best,
    Ally
    MishMash likes this.
  11. Allyson

    Allyson *****

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    Thanks Guido,but i do not think this hads been proven yet. I think the symptoms are too similar and dignosis too difficult to declare differences like this; for example I think ihave ad ME for over 20 years - beause i have heard of it and they smymptoms match mine; but i had never heard of OI Pots or EDS till recently; what is that is what i reaaly had all along but it was neever diagnosed either because nothere I not most GPS had heard of them.
    So they could well be the same disease and this is what the ED specialsts are claiming I gather.
    Not enough research has been done to date and I hope they fix this real soon !.

    Best
    Ally
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  12. Allyson

    Allyson *****

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    Thanks Esther,
    Funnily ehough my mother - who had the same symptoms a me nd was Gorlin's sign positive - had enormous calf muscles as she was a profssional Irish dancer i her youth; I wonder if thata helped her symptoms somewhat as Ihave heard strenghtening the calf muscles is a good idea.
    MishMash likes this.
  13. Allyson

    Allyson *****

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    Last night i r/ealised i have ever waited for a bus in my life

    I always get to the stop - see that the bus or tram is not coming and....start walking for the next stop.

    Usually this means I end up missing it as I am between stops when it passes ... but i would rather walk ... and often have waked all the way into the city or home.... than stand and wait for a bus

    Not that i can take them any more ... but lookig back was intereeeatiing to see my pattern and now i realise why

    As you say, Sushi, the littlel adaptations/accomodations we make to cope
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  14. xrayspex

    xrayspex Senior Member

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    thanks for info
    I used midodrine for part of one year about 15 yrs ago and it marginally helped but have been intolerant to it since then, too much like speed in my body which does not work well for me (amphetamine like stuff)

    it makes sense about b/p rising when lying down, at least for CFS/ME people, thats why we like to lie down, for me anyway, i feel that it normalizes the pressure systems in my body......unless you have crossed the threshold that makes lying down feel worse.....I guess that is when b/p rises too much. there have been rare times where i feel worse lying down, when high intracranial pressure going on or certain meds that raise b/p etc can make lying down hurt instead of feel better

    walking is just as important to me as lying down for symptom mediation
    I am the sort of CFS that can go for walks, but only at the right time of day, I have to lie down intermittently to pace symptoms

    I saw Dr Cheney once and he thought that walking makes sense for the CFS types that can do it because the way the heart and b/p etc work when you are moving upright he said is different than just standing
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  15. Mattman1

    Mattman1

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    Walking slowly for me is far better than standing-- even if I am sitting in a chair that is too close to a ninety degree angle, I'll feel it after an hour, and then feel weak, almost the way people with hypoglycemia explain their symptoms before an attack.

    Also I'm opposite of stretchy veins-- if anything, the complete opposite-- dry skin, poor flexibility, ect.
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  16. Allyson

    Allyson *****

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    y


    Hi thanks,

    yes i was the same on dexamphetamine the 2 times i tried it -I felt really racy like i had drunk too much strong coffee. And Midrodine is apparently like on e half of the adrenaline equation - alpha or beta, i can t remember which.


    yes when you walk your muscles pump blood upto the heart for you which they can barely do for us when standing or sitting still it seems..

    I often feel like a walk in the evening....? bcause that is when it is cooler? - but if i go to slow or for too long i get payback the next day.

    Yes it is all in line with what Dr Cheney has described for ME which is why i think it makes a lot of sense. The added part is it gives a really plausible explanation for it which he never arrived at I don t think. He was still not sure of the cause. This explanation ticks all the boxes for me.
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  17. Allyson

    Allyson *****

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  18. MishMash

    MishMash *****

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    I have perfected the art of slouching, almost to the point of being horizontal, even while sitting in hard, 90 degree chairs. It has always been the source of jokes and amusement to people around me. It looks very slothful and indolent. I don't mind sloths though; they always look very relaxed. Just hanging around.
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  19. Mattman1

    Mattman1

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    I never knew how 'slouchy' it looked until I saw myself in pictures-- looking at it, it is so blindingly obvious that is naturally what our bodies want, even if we're not aware of it in the moment. Who would guess one of our biggest nemesis would be right angles and standing still.
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  20. Allyson

    Allyson *****

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    Mattman thanks; interesting: 'that is what my specialist said he uses as a diagnostic tool - the people with OI wil lbe slouched in their chairs in the waiting room.

    I used to do it when I was adolescent and so had " round shoulders" - now largely straightened after years of exercise but I remember it was not uncommon then among some of my friend to slouch.
    ahimsa and MishMash like this.

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