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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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    can anyone find a pic of fingers that do NOT have it for comparison please? it seems the ring and little fingers in that pic seem to be deeper and I am not sure if it means them or if all the fingers in that pic have it
     
  2. Allyson

    Allyson *****

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    merylg likes this.
  3. Allyson

    Allyson *****

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  4. VeganMonkey

    VeganMonkey Senior Member

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    I googled the word 'hand' on google image. Most pictures are from the inside of hands but also outside of hands and they all have it. Maybe not all very prominent though, I checked with people around me and they all got it too. Not everybody has EDS of course, so I wonder maybe they mean something else by that 'foot print'?
     
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  5. Allyson

    Allyson *****

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    Thanks Mishmash,

    reposting your comment because as of today there have been OVER 10,000 views of this thread.

    I think that is an expression of interest! Thanks everyone.

    Please let's take this research forward, take it seriously and take it somewhere.

    I assume some people reading are medical professionals.

    So apart from genetic research .... what can be done to verify this issue and lead forward into positvie treatment and cures?
     
  6. Allyson

    Allyson *****

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    I

    That is the first i have heard of the elephant footprints Vegan

    other strange symptoms though are skin flaps - lttle extensions of skin like soft elongated thin warts that can be anywhere onthe body - I have had 3.

    Also excess lines onthe palm o the hand

    and i read for ME - disappearing moons on the fingernails - not sure if that applies to EDS too ub would make sens ias it is a CTD issue
    Also a reddish rash on the upper outer arms that comes and goes - agan an ME symptom - not sure if applies to EDS but agoiin would fit.... as would the scsbbing scalp wounds - maybe due to the effects of adrenaline ( one of the died effects of midrodine is an itchy scalp due to adrenalin)
     
  7. Allyson

    Allyson *****

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    One suggestion for a study is into IM Vit b 12

    I have been taking it for about a year, weekly; it has improved my sleep to an amazing extent, but does ot seem ot have affected my energy levels.
    I also notice when i take it regularly it lessens y polyuria and polydipsia markedly; maybe this is why I sleep better as not gettin blader and thirst signals all night.
    I have also read inthe manufacturers sheet that it increases blood volume.
    I stopped it 14 days ago prior to a test to measure my blood volume an , sure enough the polyuria and polydipis have returned. (BTW of course these are also symptoms of diabetes onset - maybe EDS is a risk factore for type 2 diabeties as well).

    This would be easily testable by keeping strict fluid balances on a group oa fpeople for a period of tie and then starting them on B 12 injjections and contiinuing to monitor fluid intake and output.

    It would not cost mushc to test as people could chart it form home - on line even.
     
  8. Allyson

    Allyson *****

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    What none of the other theories explain is why, in my case at least, if I stay lying horizontal my symtoms disappear entirely.
    This is something that otheres can test too- instead of getting up to sit at the computer and work, do it lying down and do as much as you can lying for few days - or as many as it takes ... until symptoms disappear.

    thes see if time upright brings back the symptoms - for me there is a direct correlation.

    So some good basic medical research might invove testing this with one group lying as much as possible while a contorl group stays upright as mucha as possible for a few weeks.

    Again inexpensive as could be done from home with symtoms reported on line.
    Also nonn- invesive ... .and interesting.
     
  9. VeganMonkey

    VeganMonkey Senior Member

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    Maybe you have POTS? I have that and being on the computer lying down makes a difference. So instead of sitting down I have been doing that lying down. I also watch TV lying down. I think it helps the bloodflow and prevents blood to stay in the legs too much. If I stand or sit too long (or even walking) I get a funny feeling in my legs which disappears when I lie down.
     
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  10. Allyson

    Allyson *****

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    Yes that is what i think VEGAN,- but EDS is the same thing

    if you imagine that stretchy skin you see on the tube clips and imagine your veins are like that - what happens to your blood supply??? it all sits in the large and distended abdominal blood vessels so none gets to your heart and brain!
    Hello ... earth to mars,,,,we have a problem.....lol

    but seriously - then adrenaline gets excreted contimuously to try and constrict the blood vessels so your brain can get some blood ..... more problems....

    plus the pooled blood leaches out into your feet and hands making them swell up too
     
  11. sandgroper

    sandgroper

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    Certainly laying down is absolutely necessary for me. I am dx EDS. The dysautonomia I experience fits more with POTS than NMH. Many have EDS and some form of dysautonomia. BUT my symptoms do not go away when I am laying down. Even horizontal I find it difficult to think and get exhausted from trying to.

    It seems EDS predisposed me to something I call ME. See Byron Hyde's definition of ME and the section EDS. It seems that those with EDS are more susceptible to neurotoxin illness. If I take away everything that can be explained by EDS/POTS I am left with an extreme intolerance of activity...any activity making daily living difficult. I do not have a lot of viral symptoms on a regular basis. WHether I have ME or some neurotoxic illness, remains to be seen. I know I have gotten progessively worse with age which may be explained by EDS or maybe due to something else.

    Certainly the people I know who just have EDS do not have the problems with exertion and cognition to the extent that I do, nor do those with purely EDS/POTS. I have met those dx with CFS to find that they do in fact have EDS/POTS though......so for some people that might explain all their symptoms.
     
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  12. merylg

    merylg Senior Member

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    Allyson likes this.
  13. Sherrie

    Sherrie

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    I could never test it because I cannot lie down for that long, it hurts my back and hips.
     
  14. Sherrie

    Sherrie

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    Where does this quote come from?

     
  15. VeganMonkey

    VeganMonkey Senior Member

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    My specialist sees POTS and EDS as to different things. I have been diagnosed with POTS but not EDS, I am going to see him soon and ask for a referral to an EDS specialist as another doctor said I might have that as well. It would explain a lot of things for me.
     
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  16. Allyson

    Allyson *****

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    HI Veganmonkey, thanks.

    Yes do look into EDS then as so many people here find it may apply to them; do you have an EDS specialist?

    It is maybe better to go armed with a name as many docs don't know a lot about it.

    Anyone else know of any who specialise in EDS please?

    thaks in advance
     
  17. Allyson

    Allyson *****

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    sherrie it was from one of the EDS info pages - i can find which one precisely if you want it
     
  18. Allyson

    Allyson *****

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    Thanks Melylg

    I forgot to say when mentioning the 10 000 reads of this thread - thanks so much to eveyone who has kindly sent replies, links, information and feedback.

    It is all greatly appreciated and has been a fantastic learning experience for me - and for many other too I know.
     
  19. Allyson

    Allyson *****

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    Thanks Sandgroper, I think one of the issues is at the momet EDS is so widely UNDER diagnosed that it is hard to make valid comparisons. (I found someting recently that said how some poeple with POT had trouble lying down - they go too far the other way - and it explained why but alas i no longer have it to hand. WIll post it if i find it again)
     
  20. Allyson

    Allyson *****

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    Florey Institute - Melbourne Australia - getting interactive on neuroplasticity etc for comedy festival - some interesting research/ers including neurovascular.

    http://www.florey.edu.au/
     

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