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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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  2. Allyson

    Allyson *****

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    And I think this published article throws a bit of light onthe situation too.

    http://www.sciencedirect.com/science/article/pii/S2213158212000484
     
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  3. Allyson

    Allyson *****

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    EHLERS DANLOS NATIONAL FOUNDATIONHave you tested positive for several mutations of EDS? Generally speaking, you're only diagnosed with one. Diagnosis of type comes by finding the EDS type that most matches your symptoms; if each type of EDS were a bucket, and diagnostic criteria were balls, you toss a ball for each criterion you have into the bucket that has that criterion, and you keep doing that until you've used up all the balls that are criteria you have. The bucket that holds the most balls is the EDS type you'd be diagnosed with.

    EDS is a collection of genetic collagen defects. Each type of EDS is defined as a distinct problem in making or using one of the types of collagen. Collagen is also the most abundant protein in the body, so effects can be wide-ranging in both location and severity. Collagen is what the body uses to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched but not beyond its limit, and then safely return to normal. WIth badly built or processed collagen, some of the tissue in your body can be pulled beyond normal limits, causing damage.

    The idea they might be linked or overlap probably comes from the overlap of body locations in which the collagen types are found.

    One of the causes of hypermobile type is suspected to be a flaw in collagen type 3, which appears alongside collagen type 1, because it's produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Collagen type 3 is found in granulation tissue (the connective tissue that replaces a fibrin clot in healing wounds), reticular fiber (the supporting mesh in soft tissues such as liver, bone marrow, and the tissues and organs of the lymphatic system), artery walls, skin, intestines and the uterus. So problems might be found in Hypermobile EDS any of those places. Another source of HEDS is a Tenascin X deficiency; TN-X is a protein in connnective tissues including skin, joints and muscles.

    Classic EDS is the result of a flaw that affects collagen type 5 and collagen type 1. Collagen type 5 is found in cell surfaces, hair and placenta. Collagen type 1 is the most abundant protein in the body, and is found in scar tissue, tendons, skin, artery walls, fibrocartilage, organs, and bones and teeth.

    Vascular EDS is a particularly destructive defect in collagen type 3 that leads to vascular failure early in life, although now some available treatments are extending life. Again, here there may be an apparent overlap of symptoms with Hypermobile, because the cause of Hypermobile EDS may be a flaw in the same collagen type 3.

    Collagen types 1, 3 and 5 are pretty much all found together, throughout the body:

    Type 1: This is the most abundant collagen of the human body. It is present in scar tissue, the end product when tissue heals by repair. It is found in tendons, skin, artery walls, cornea, the endomysium of myofibrils, fibrocartilage, and the organic part of bones and teeth.

    Type 3: This is the collagen of granulation tissue, and is produced quickly by young fibroblasts before the tougher type 1 collagen is synthesized.

    Type 5: Most interstitial tissue, assoc. with type 1.
    unquote
     
  4. Allyson

    Allyson *****

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    And again a quote below from the EDS foundation -- these really sound like we have the same or very similar diseases and if so we could combine forces and resources?....

    Clinical Description, Gastrointestinal. Functional bowel disorders are common and underrecognized, affecting up to 50% of individuals with EDS, hypermobility and classic types [Levy et al 1999]. Gastroesophageal reflux and gastritis may be symptomatic despite maximal doses of proton pump inhibitors with additional H2-blockers and acid-neutralizing medications. Early satiety and delayed gastric emptying may occur and may be exacerbated by opioid (and other) medications. Irritable bowel syndrome may manifest with diarrhea and/or constipation, associated with abdominal cramping and rectal mucus.
     
  5. Allyson

    Allyson *****

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    Yes good question Sushi an I do not think there are adequate treatments out ther yet.
    But if we can all think about it and see if we have at least found the cause - even if dfor only a sub-set of us- that is a start d then we can start looking for treatments.
    That was my point in starting this thread - to get people thinking about whether this could apply to them too and if so to how many of us.
    One question to ask is - can you stand leaning against a wall for 10 mins comfortably?
    Would the idea of that bother you?
    In a normal person that is not a problem - just boring
    If it is just a question of activity versus rest- well leaning against a wall is resting ....
    but I do not think I could do it without feeling very ill and would certainly get payback from it.
    I dread the thought of it actually.... I do queus.
    I would much rather walk for 10 mins and that is because there is no muscle movement to pump th eblood up for you when you are stationary. And why after 10 mmins on a lab stool I always had to go and lie down.
     
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I guess, for me, I am one of a "subset" for which EDs seems truly causative only of EDs! (and its painful manifestations) So I tend to look for treatments aimed at some of the areas that I do suspect are causative for me--and treat the manifestations of EDs in the best way I know--regular osteopathic work, pilates, gelatin....

    Standing, leaning against a wall for 10 minutes, is OK for me, though I know that it isn't for others. But this seems to me more an OI issue and there are many types of OI that are not related to EDs. Even "the legendary" Dr. Blair Grubb (renowned autonomic specialist) recognized that while many of his patients had EDs III, many didn't.

    Yes, I do think that EDs and ME have a relationship for some, but I think there is a danger, having recognized that relationship, of regarding EDs as solely the causation and stopping looking at some of the other areas of testing and treatment that have helped many of us get better--viral and bacterial infections, Lyme and Bartonella, different forms of toxicity....etc.

    I think it works best for us to keep our vision wide and look at all research and protocols--including EDs.

    Best,
    Sushi
     
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  7. Allyson

    Allyson *****

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    Hi Sushi, thanks;

    i am totally in agreement with you and i do not wish to exclude other contirubing factors and diagnoses. I just think that this is one of the possibilities that have been let out a lot up til now.

    I just want people to consider this as well as a highly likely possilbity for many.
    It may be one way to start making sub- sets

    A few other ways i can think of :
    those who think they have a viral origin - though there again, i am very prone to viruses - at least 2 monthly - and the fact that the illness started at the same time or after a viral illness does not prove causation

    those who get nausea and vomiting - i never get these, thank fully.

    maybe those who lose weight and those who are prone to put it on - this may or may not be connected with the disease but is worth considering as a point of differentiation. (I do notice i eat more when i am in or heading for a crash and before a crash i often have severe sugar cravings and sugar binge. When i am well i rarely think of food except like this - "Gee i just realised am hungry ( fter several hours) and so i had better stop and eat something ...darnit".)

    Those who have periodic good days/hours where they feel totally well and "normal" - like me - and those who never do and are sadly consistently ill or confined to bed

    Those who test positive for Lyme disease

    finally those who can type and those who are dyspraxic typers like me .... (half joking).


    Any other suggestions or thoughts welcome, thanks agaian Sushi for the thoughtful response.

    BTW how do you find gelatin helps?
    I am looking into things that are supposed to help skin hair nails to see ig htey help ohter connective tissue lonng term - i know it takes severl weeks for the nail formulas to strengthen my nails but they really do work, and i think gelatin is one of these things.

    cheers,
    Ally
     
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Don't notice a thing from the gelatin--sounds good but time will tell!

    Sushi
     
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  9. Allyson

    Allyson *****

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    i remember we useed to tke the caps when I was ateenager to strengthen nails.
    I know the skin hair nail formulations around sork to strengthen neils at least.
    Horse chestunut is lso supposed to strengthen hair adn that seems to be on the EDS list of recommended treatmente - from my specialist I think though i may have read it elsewhere.
    so other things that are supposed to "boost collagen production" are lycopene omega 3s oily fish, imedeen and I recall Dr Perricone had long lists of things for skin like DMAE etc; also a low GI diet to stop blood sugar surges seems to be important.
    I am taking lycopene and a fe other things.
    they all take weeks to monnths to start working.
    btw i notice vit D deficiency is also strongly associated with EDS.
    cheers
     
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson I've also taken horse chestnut for a considerable length of time and get plenty of Omega 3's, and follow a low GI diet. Maybe I'd be worse off without, but I never noticed any change from these things. Sigh!

    My vit D is OK, so I don't fit this particular picture!

    Best, Sushi
     
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  11. Allyson

    Allyson *****

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    saw this intersting link - concise and intersting - on magnesium on the EDS fb page - not surprising reaaly but once agaoin you could just subsitute M E for EDS
    "Magnesium and Ehlers-Danlos Syndrome
    Part One: *Why* Persons With EDS Need To Know About Magnesium" from Heidi Collins, MD (EDNF Professional Advisory Network) http://bit.ly/V2ra6c
    [​IMG]
     
  12. MishMash

    MishMash *****

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    Ally,

    Thanks Ally for continuing to post on EDS, still the most likely cause of POTS/OI and other ME/CFS symptoms. At least in a large subset of the patient population. This is relevant, especially in view of Dr. Newton's new research showing (again) that many patients have reduced cerebral blood perfusion.

    EDS researchers have come up with an interesting theory that may explain POTS/OI and other symptoms. Basically it states the human cranium holds blood, CSF, and brain matgter-- and the total of these substances must remain constant. Your skull is sealed; so the body knows only a certain amount of content is allowed in. And it will wisely reduce one substance, to avoid geting overfilled by the other components. Doctors have actually known this since the 1800s.

    This is where "intracranial hypertension" comes into play. If your brain fluid ducts are malfunctioning, due to weak tissue disorders (EDS), then intracranial hypertension occurs.
    If there is too much of any one fluid (CSF), the body will automatically reduce the amount of blood entering the brain. This theory of brain fluid homeostasis is called "the Monro-Kellie hypothesis." It has been observed, mainly by NASA, plus other researchers (such as Dr. Diana Driscoll - "prettyill.com").

    If true, it explains how ME/CFS patients may be suffering from both blood brain hypoperfusion + intracranial hypertension. Each of the fluids is competing for space in a limited environment. If your cranium is such that it blocks up too much fluid, amazingly it will slow down the blood flow to the brain--to maintain homeostasis.

    BTW Cort Johnson posted, in early 2011, on the subject of "Empty Sella Syndrome", or the squashing of the pituitary gland by hypertension of the brain fluid. Cort found it very interesting he had ESS. Many other patients also posted they had this problem, plus other CFS issues and hypothyroidism. Cort asked the very salient question if brain fluid hypertension (also called "hydrocephalus") was a cause of ME/CFS and said it was an important area for future research.

    Anyway, this was a post from an EDS patient web site, and it explains better than I ever could, how this complex brain dynamic works. There are two parts to the post. This particular patient identifies Diamox, a common diuretic, as a means of reducing too high brain fluid pressure and easing the symptoms of POTS/OI, etc.

     
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  13. Sherrie

    Sherrie

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    Hey I was just reading this article that was posted on facebook which I thought you might be interested in. EDS is mentioned about 2/3 down.
     
  14. Allyson

    Allyson *****

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    Hi Sherrie,
    thanks but the link has not shown up; could you re-post please?
    cheers
     
  15. Allyson

    Allyson *****

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    Hi Sherrie,
    thanks very much but the link has not shown up;
    could you re-post please?
    cheers
     
  16. Allyson

    Allyson *****

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    thanks
    Thanks indeed Mish mash but the link would not open for me - comes up as a Nasa 404
    http://ntrs.nasa.gov/archive/nasa/casi.ntrs.nasa.gov/20110014672_2011015438 .pdf
     
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  17. ahimsa

    ahimsa Senior Member

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    Allyson and MishMash like this.
  18. Sherrie

    Sherrie

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    Allyson likes this.
  19. Sherrie

    Sherrie

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    Part 2 is up now, I found it quite interesting that he was discouraging walking bare foot or with flat shoes, or sitting with back straight etc because certain postural positions aggravate.
     
  20. Allyson

    Allyson *****

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    thanks Sherrie, will read it - yes sitting on labl stools was bad for me and now i know why- your legs are fully extended down and you have no muscle movement happening so no possibility to pump blood up.

    I used to last about 30 mins before needing to go for a walk or go into a dark lab to lie down on the floor - usually both.
     

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