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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 Senior Member

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  2. WillowJ

    WillowJ Senior Member

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    Allyson likes this.
  3. Allyson

    Allyson Senior Member

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    Yes I think that is true Willow

    this one is inn Canada

    hopefully that will change as it is a really important diagnostic tool for us

    cheers


    Ally
    WillowJ likes this.
  4. Allyson

    Allyson Senior Member

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    Stiff Zebras - Someone has started a new group called Stiff Zebras - Ehlers-Danlos Syndrome stiff joints and muscles not Hyprmobile - for those with EDS 3 who re NOT Hypermobile at all but rather are very stiff - yes we are out there - please add anyone or share this link or tell them about us thanks.

    here is the link. Also those who are BOTH HM and Stiff are most welcome too - (BTW here has been a huge response to this post so far with a trillion likes and comments so it is obviously a common issue)https://www.facebook.com/groups/455374384560623/

    and as many are querying if you can have EDS without being HM - yes you can and here is a link with more EDS symptoms
    http://forum.notcrazy.net/index.php?topic=9571.0

    So far they have a list of 5 docs who say you do NOT have to be HM To have EDS - including Brad Tinkle

    Ally
  5. Allyson

    Allyson Senior Member

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    WOW the stiff Zebras fb page has really hit home
    110 members in under 20 hours !


    Has stiffness - of muscles and joints been overlooked??
  6. Allyson

    Allyson Senior Member

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  7. Allyson

    Allyson Senior Member

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    merylg likes this.
  8. Allyson

    Allyson Senior Member

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    EDS on Today Tonight
    Australia - emphasis on hypermobilty of course - better press




    A
  9. Allyson

    Allyson Senior Member

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  10. Allyson

    Allyson Senior Member

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  11. stayhealthy4

    stayhealthy4

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    I was diagnosed with brainstem compression -Chiari 1 in 2006 and Fibro in 2007 and eds in 2008, and now 2013 just had Mayo testing and they say orth inance? 2006-2008 was horrendous, with dizzy, pain, blurry vision, almost passing out, fatigue and about 30 more symptoms. I started on flexeril, hydrocodone, and gabapentin and P/t which help a little, and basically adjusted my life to doing "nothing" no work, no household chores, a lot of laying down. I did have low ferritin and iron(anemia) and took me 2 years on iron to get those back to normal range. My doctor I had then, refused to test me for Vit D defiency when I asked her that I thought I had it. So, I went to another doc, who tested me and yes,! I did have it. I take Vit d and feel much better taking it, getting that back up to normal levels. From 2009 to 2012 I pretty much "adapted" to my life, and was in pain and fatigued a lot, but used to it. but then in 2012 Ihad an injury(concussion to my head/neck) Could this have caused my symptoms to worsen? Since the accident, My adrenaline is out of control(starts with abdominal pain, feeling hot/cold, sweaty, clammy, tremors/shaking, anxiety/terror. My blood pressure has been crashing a lot, twice a week to 70/40, before the accident, it only happend once or twice a year. My pain and fatigue has increased(just shaing someone's hand is enough to make me cry, or if my dog steps on my foot) I have NO doctor for eds, or any of my issues. The doctor who diganosed me with eds in 2008 referred me to come back to my State and see a PCP. That did not work, I cant find any doctor who even knows these issues. I dont know how I found Mayo, must have googled my symptoms, but at least, maybe they can help point me to help. No one helped me with fibro either, I think tho, I have cfs, from reading info at this web . I also got diagnosed in 2009 with diabetes 2. My mom was diagnosed with orthostatic intolerance, diabetes, I think she also has the eds if I do, and cfs. Her bp went down to 60/40 and she had to go to ER intensive care for 4 days. and get 3 bags of blood and 3 fluid, And of course her diabetes went nuts/out of control. Does this run ion families/hereditary? worried about my 2 kids. Anyone that has tips/help for me? how to deal with eds/cfs symptpoms. I am at my wits end.I just want to be as healthy as normal as what I can be. I want my life back.
    merylg and taniaaust1 like this.
  12. Allyson

    Allyson Senior Member

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    yes EDS is definitely genetic.

    There are some ti to cope here in this thread

    and there are pages on FB for Chiari too

    http://forum.notcrazy.net/index.php?topic=9571.0

    start with coconut water to rehydrate, or salt and potassium and IM b 12 SHOTS is my advice

    best of luck

    ALly
  13. Allyson

    Allyson Senior Member

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  14. stayhealthy4

    stayhealthy4

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    thank you, I will try the coconut water this week, I know Mayo mentioned salt, but has not gotten my follow up app yet, with them for all the info /my trreatment plan. Is the b12 something I ask the doctor for? and does Physical Therapy/exercsise help? I do abosolutely no exercise. but I noticed when I was in Phys Therapy for a few months and they had me go 2-3 times a week, I felt better than I normally do. but when I stopped P/T the low bp, and low sugar/high sugar, adrenline spikes , passing out, and more pain and fatigue started back worse.
    Allyson likes this.
  15. merylg

    merylg Senior Member

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  16. Allyson

    Allyson Senior Member

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  17. merylg

    merylg Senior Member

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  18. Valentijn

    Valentijn Activity Level: 3

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    I score 7 out of 9 (maybe 9/9, but not sure about my elbows).

    When I was a kid I used to bend my pinkies all the way back to touch my forearm to freak out my friends, though now they won't go quite as far, but still far enough. I can still put my hands flat on the floor when standing with straight legs. I also discovered I can bend my thumbs to touch my forearms, though it's a bit uncomfortable (I get a lot of swelling around my forearms since I came down with ME) - it never occurred to me try that before.

    My knees both bend backwards, which took me by surprise ... I thought they were normal until I had one leg braced straight out on a wall, and my fiance was a bit shocked to see my leg curving the wrong way :confused: I'm not sure about my elbows - I would have said "no" but they seem to bend as far as my knees do, so maybe there's some curve if I brace my hand against something, when someone looks from the proper perspective.

    I can also bend over double while sitting down, so my chest is basically on the ground.

    I did have some OI symptoms prior to getting ME/CFS, but it was pretty intermittent, much milder, and of short duration. Definitely two different diseases, though EDS certainly could have made me more susceptible to ME/CFS, or is magnifying the symptoms of it.
  19. Allyson

    Allyson Senior Member

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    Not sure what evidence you use to conclude they are "definitely two different diseases??"

    A score of over 5 indicates definite hypermobility syndrome, which is now said to be synonymous with EDS.

    OI symptoms and many other symptoms and signs of EDS do not show up until later in life.

    Most EDS symptoms are identical to those listed for ME //fibro so how one distinguishes what I s causeing which is not evident.



    A
  20. Allyson

    Allyson Senior Member

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    Brad tinkle's book on eds says that the Beighton score to gauge your hypermobility should be adjusted from childhood to adulthood because we all (and especially zebras) stiffen with age due to general aging and damage from loose joints

    In general it is said you need to score at least 5 on the Beighton scale but for adults that number could be lowered and still meet diagnostic criteria

    Nowadays many are Dx wih EDS with a score of 0 if they still have other symptoms and family history too.


    A

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