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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. GracieJ

    GracieJ Senior Member

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    I am discovering CTD may very well be a large player in my situation, and want to learn more.

    Mitochondrial theories play in strongly, as well as liver function, methylation pathways, HPA axis dysfunction, impaired immunity, impaired digestive processes, etc. not to mention the kick-off factor many experience from a virus, sudden severe bacterial illness, or an accident. A bacterial infection followed by extremely powerful antibiotics kicked off fibromyalgia for me in 1990. In 1997, I had mononucleosis, and within a year, was experiencing ME/CFS in its full ugly entirety. It has taken years just to sort out what was what, with well-meaning doctors scratching their heads or misdiagnosing. This isn't the full story, of course... so many pieces.

    I can easily read lists of lupus symptoms, Lyme symptoms, MS symptoms, etc. and relate to most of the listed symptoms. I seriously doubt that I would ever be diagnosed with every last one, and would very much worry about my own sanity if I thought I had all of them! That is seriously hypochondria at that point. I am very, very intrigued, however, at all the overlap, one huge Venn diagram that of course makes me wonder what is at the root of ALL of it. So much common ground, isn't there.

    As for the possibility of EDS being an underlying factor for ME in some cases, I would not doubt that for a minute. However, I am not sure at all that it underlies all cases. There are too many unanswered pieces. It seems to be an interactive co-morbidity or co-factor, and it crosses my mind that it may actually be a random, genetic co-factor. Could be wrong. Don't know.

    As I began to explore the possibility of connective tissue anomalies within myself (about two months ago), my first thought was "Oh, no, no more alphabet soup. Don't need another one..." Labels, if true, are only useful if life is improved in some way, or create an ah, ha! moment happens that brings one closer to function. Otherwise, just give me a straitjacket!!
  2. ahimsa

    ahimsa Senior Member

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    Glad it was helpful!
    I think it's great to point out symptoms that you have and to ask whether others on this forum have the same ones. I hope that there was nothing in my post that sounded like I discouraged that type of post!

    It is absolutely true that people can have some form of OI without knowing it. It took me 5 years before I got a diagnosis of OI. I first got sick in 1990 but it was not until 1995 that I got a tilt table test to confirm my OI diagnosis (NMH = Neurally Mediated Hypotension, aka, Neurocardiogenic Syncope and other names)

    By the way, all my symptoms of OI were there right from the start of my illness. Some folks have said that these symptoms came on for them only after years of illness but that's not true for me. My very first symptoms were dizziness, nausea and feeling lightheaded. (all pre-syncope feelings - but not recognized as such since I never fainted, I was always able to sit down before that happened)

    And I should also mention that I had NO SYMPTOMS of OI before I got sick with this "mystery illness" (ME/CFS/CFIDS/whatever name you prefer).
    I'm sure it's true that some patients (a few? many? most? I don't know...) who have some form of OI also have some form of connective tissue disorder like EDS. And I'm completely supportive of any research that would look into these overlaps between ME/CFS, Fibromyalgia, OI/POTS/NMH and EDS.

    Because I am not a doctor, much less someone who does medical research, I don't have the medical expertise to discuss these details. So that's why I don't talk much about this topic. I hope that my silence on what research should be done on EDS/OI/ME/CFS/etc. has not made it sound like I don't want any research done. More research is a good thing!!!

    My main question is why not mention both Ehlers–Danlos syndrome (EDS) and Orthostatic Intolerance (OI) in your messages, especially when you're talking about tips on how to deal with the OI that is caused by EDS? It seems to me that skipping straight from EDS to the symptoms (problems standing, heat intolerance, and so on) might be confusing to some people. It might make them miss out on some information.

    For example, if a patient knows that they have OI, but they don't know that they have EDS, they might search this forum looking for messages about OI (e.g., keyword searches) and they would never see your comments at all. And then they might never find out about EDS or other connective tissue disorders. The same thing would be true for someone who knows that they have IBS but don't know what causes it. EDS might be one answer for them.

    From my limited experience it seems that EDS and other connective tissue disorders are even LESS well known than OI. Of course, even OI is not very well known. Two different specialists that I saw (sleep specialist, gastroenterologist) responded with "What's that?" when I mentioned my diagnosis of Orthostatic Intolerance.

    To repeat what I said earlier, I guess my main question is this - why post messages that list tips for treating OI symptoms without mentioning OI at all? Even if all forms of OI are caused by EDS, what about the patients who have an OI diagnosis and no EDS diagnosis? It would be helpful for them if OI were included so they could find these threads about EDS and possibly learn something new. The same thing would apply for other conditions that might be caused by EDS.

    Anyway, it's just a suggestion. I hope it makes sense.
    Allyson likes this.
  3. ahimsa

    ahimsa Senior Member

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    GracieJ, I think this sums it up pretty well. It's complicated!

    It would be nice if there were an easy answer. But for most of us there are loads of factors to be considered. So that's why we ask questions.
    Allyson likes this.
  4. MishMash

    MishMash *****

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    The term "proselytizing" was used facetiously. As an attempt at humor. Somebody took it up seriously, like I was really trying oto change everybody's mind. Not really, Other people on this web site are engaged in "persuasion campaigns," believe me, if the word proselytizing really turns you off. I have read all of them, and I don't agree. But I don't post lectures telling them to stop either. They have a right, but so do I. Just saying...
    Allyson likes this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Good points about the inter-relation of OI and EDs. I don't think we have enough evidence to say "what causes OI." There are certainly many factors, only a few of which have been touched on in this thread, and many inter-relationships.

    I do think it is clear though that all OI manifestations are not caused by EDs--there are just too many factors involved. Also, for many of us with OI, its intensity or even its existence varies from day to day, week to week. Some days it is not there at all, some days it is a tough symptom. For instance, when a visceral therapist works on my vagus nerve, OI disappears for a while. If I have a sinus infection (which involves, immune system, gut, fungus, and probably connective tissue), my OI is much worse. When it clears up, OI improves vastly.

    This could not be true if OI were solely related to connective tissue problems as those change much, much more slowly. My OI came on virtually overnight--this means that, while connective tissue problems certainly predisposed me, it was not the cause for the onset.

    Yes, very complicated and I think it is important to discuss this in a way that does not call into question the experience and diagnoses of large subset of members here. If we do so, the good information here is apt to be discounted.

    Sushi
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  6. Allyson

    Allyson *****

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    Hi Tania,
    thanks

    Hyperacousia is the sentivity to noise which many of us suffer from in addition to photophobia

    No I am not talking about problems regulating body temp - I have that too. and i think that is a separate issue and results likely from brain involvement.

    I an talking here about the fact that getting very hot - as in hot weather or a hot laptop PC on your abdomen for a few hours will bring on worse symptoms - for me anyway, ( and for others too as I think heat intolerance is a commonly listed symptom of ME) which I attribute to the increased vasodialtaion of hte preipheris in hot weather or the abdominal blood vessels in the laptop case - either drawing blood away from the brain.
    Th e laptop theroy is my own observationthat I made above and I am going much better when i keep my abdo cool. In that I don t get tired and I feel better generally.

    manily though I am asking people to observe in themselves and see if this theory could be right - we have the time and resources to do that a t least and it does not hurt to observe and note and ask questions. If we can get some anecdotal confirmation then people may start doing medical testing on us along these lines.
  7. Allyson

    Allyson *****

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    The connective tissue changes I am referring to is in the blood vessels - ie the blood vessel wall.. I think Collagen defect is the issue but I am not sure on that - if that is all; these changes are very quick normally. For example, when you start exercising the blood supply to the peripheries increases quickly to cool you down.; this reselts in less blood being available to the brain and if we have stratchy veins and thus blood pooling in our major veins - eg in the abdomen because we are upright- we don t have enough left for the brain.... the brain has no energy supplies and needs a lot of nutrients; so this is an emergency for us .. so we release more adrenalint to try and vasoconsrict more... when this does not work due to the faulty bllood vessels more adrenalin is released and so On . At least that is my understanding of it so far.

    Also in my case My OI was virtually asymtomatic for years ( apart forma faint at 12 and a bout of migraines at 18 which I did not then connect with it) and I am saying that therefore I guess many peole may have OI and not know about it as I did . I only started getting dizzy later.. 20 years after my ME symptoms - crashes, brain fog, photophobia, hyperacousia, polyuria and polydipsia, migratory joint pains, RSIs and later TMJ etc etc began.
  8. Allyson

    Allyson *****

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    For any one who was interested in minimising heat to the abdo form laptops - and thank for the suggestions

    For the moment I have found a bead-filled pillow under the laptop works best.

    Foam pillows were getting so hot right through that I had to keep swapping them over every 30 -60 minutes !
    Alos of course the pillow was keeping in body heat and so heating up form the bottoma s well - especially noticable in hot weather.

    The brand of pillow I have is called Cuddle-buddy.

    That works well though I will look at laptop stands when I get a new laptop - also to put laptop on an angle os itis easlir to type on lying down.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson likes this.
  10. Allyson

    Allyson *****

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    Awesome thanks Sushi, just what I need; I had heard they were around - for guys mainly to stop overheating of their crown jewels and thus impeding procreation ... but that will be just the ticket for ME too.

    I am also looking out for a Chillow or cold pillow to put on my abdo anyway too cool it and for hot days; the ones i see online people say are VERY heavy but someone has told me some are not so I will check them out too.

    thanks again
    Ally
  11. Allyson

    Allyson *****

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    I can t speak for anyone else but it was never my intention to question anyone's diagnosis( if that is what you mean here Sushi - I may have read it wrong). However this is precisely what was done to me early in this thread where someone declared my diagnosis must be wrong or inadequate...in response to my initial posts on this topic.

    I guess if it seems like I am saying that it is a misundertanding as I think I am saying "please have another look and think and see itf this COULD apply to you because a lot of pople here an on other sites seem to come back with a reflexreaction of " no that can't be right".... however I am bendy or I do have blackouts ...or my mother or daughter is double jointed; the link to connective tissue has been made - not by me - and i am just puttin th einfo out and wanting others toat least think about it before dismissing it. And I also admit it was months after my doc told me that aI started to realised it was true for me; when he first told me I must admit I thought - what would he know about it. (He is blood pressure specialist BTW... lol) .
    And I repeat it is often said that there are maybe differnt subcategories in this illness yet no-one has specified what they might be; this may be the start of one of those sub-junctures where this applies to some but not to others. And if joint flexiblity, allergies, asthma, excema, hayfever hemorroids etc and Gorlin's sign are in your family it MAY be of interst to you.
    In my casse many of my family are Gorlin's sing positive - i am not and I have allergies and asthma and hay fever; no flexible joihts at all in me or the immediate family.
  12. taniaaust1

    taniaaust1 Senior Member

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    Ive been researching mito disease more.. and photophobia can happen with that too. "One" of the reasons for that is that mito disease can cause dysautonomia
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, the blood vessel problems seem to be collagen--unless you have vascular EDs--which I know I don't, and is much more rare than EDs type III.

    What I was getting at is that while blood flow can change quickly, the state of your collagen doesn't. Conditions, such as heat or cold, being upright, exercising do change quickly, but your baseline collagen doesn't.

    So, OI would not change suddenly if it were caused solely by stretchy veins. The "stretchiness" of my blood vessels does not change overnight, or from day to day. But blood flow can change in response to other factors than a collagen defect of the veins.

    One example is the damage to the norepinephrine receptors that have been found in the peripheral nervous system. Then there is a dysfunctional HPA axis. It is just very complicated and not fully understood.

    Sushi
  14. Allyson

    Allyson *****

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    hey Sushi
    yes my specialist says vasular EDS is very serious -- in a life - threatening early sense so I think we are discussing type 3 EDS.
    Yes BUt if the faulty collagen in your veins results in blood vessels that are ALWAYS too stretchy - or not elastic enough - then EVERY time you go upright you have a critical situation on your hands because you brain is not gettin enough blood. Throw in a situation on top of this where say peripheral vasodilation ( due ot exercise) or abdominal vasodilation ( say due to a large hot meal or a laptop's heat) and you have even less blood for the brain.

    So more adrenalin is excreted ( to try in vain to get the veins that cannot constrict to constrict to stop the blood pooling and thus allow it to get up to your brain)... so more flight or fight response ... photophobia, hypaeracousia, breathlessness, anxiety, shaking, sweats, etc etc.

    If this goes on for years and years every time we stand up ...no wonder we end up very, very ill.
  15. Allyson

    Allyson *****

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    CONNECTIVE TISSUE

    Hi all I thought i might read up on connective tissue as I really don t know a lot about it.
    Even the wiki page is quite good on this for a start - much better than the EDS wiki page.
    I will put up some links rather that give my interpretation

    But even a quick perusal shows this is a prime candidate for a multi -sytemic disease.
    It seems to me made from collagen and elastin mainly

    It is a major component - (if not entire component? ) of blood vessels, blood (!), gut, joints, ligaments, fat and I think meninges ( surround brain and spinal cord).

    Special connective tissue consists of reticular connective tissue, adipose tissue, cartilage, bone, and blood.[3] Other kinds of connective tissues include fibrous, elastic, and lymphoid connective tissues.[4] wiki

    I did like this sentence:
    Many connective tissue diseases feature abnormal immune system activity with inflammation in tissues as a result of an immune system that is directed against one's own body tissues (autoimmunity).[1]wiki

    functions of connective tissues include
    • Storage of energy [!!!]
    • Protection of organs
    • Provision of structural framework for the body
    • Connection of body tissues
    • Connection of epithelial tissues to muscle tissues
    Ok I am going to read some more about it now, there are lots of links
    cheers and thanks everyone for the continued interest.
    If anyone has links to medical articles on it I would love it if you could post them please.


    http://en.wikipedia.org/wiki/Connective_tissue_disease
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  16. Allyson

    Allyson *****

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    I would like to add the thought that before helicobacter pilorii was discovered to cause stomach ulcers everyone - medical and lay people alike - "knew" that ulcers were "caused by stress'.

    No-one questioned this for many years but it is now know to be untrue.

    But one or two people did question it.... and we would still think that today if they hadn't swallowed helicobacter to prove that the bacteria caused ulcers - which are now easily treatable by antibiotics.

    Sometimes what we have thought to be true for years is not always true.

    In the same way doctors were sadly taught that any disease they could not find a known organic cause for had to be psychiatric in origin.....and we know where that line of thinking landed us...ignored, neglected and abused for years because of our condition.
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  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, true, and that goes toward what I am saying. If my veins are always too stretchy (and have been more or less from birth), then the sudden changes that I have experienced and continue to experience, must not be coming from this static (or perhaps slowly progressing--that isn't clear) condition.

    Other factors must be at play to bring a sudden onset of OI (when the collagen in my veins did not change suddenly). After this sudden onset of OI, yes, the factors you mentioned are part of the picture, but so are other factors. For myself, I'd guess that HPA axis dysfunction has been significant as well as immune system dysfunction (probably arising from viruses and infections) and a host of other exposures.

    Sushi

    P.S. I was just watching House and they actually had a patient with Ehlers-Danlos!
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  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think someone mentioned this earlier, but the position you stated above, ("please have another look and think and see it this COULD apply to you...") might be more clear if you asked a moderator to change the thread title--which, as it stands, could lead to a misunderstanding of this position.

    Posing the question "Is ME due to Ehlers-Danlos Syndrome--"stretchy veins?" can be interpreted to imply the possibility that if you don't have Ehlers-Danlos Syndrome, you don't have ME. I don't think this is what you mean to imply, but it is a logical progression from the question in the thread title.

    Something like, "What role does Ehlers-Danlos Syndrome play for a subset of ME patients?" (or something along those lines:)) might better stimulate the exchange of ideas and experience that I think you would like to see happening here.

    Please understand that this is not intended as a criticism but a suggestion to clarify the discussion.

    Sushi
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  19. Allyson

    Allyson *****

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    Oh great Sushi.... I must watch it ta. Are they contortionist or just ill?

    I thought for me my bad symptoms started after my first flight to Europe in 1984 - a 20 hour marathon from here each way; this coincided with my giving up coffee after OD' ing on it in Italy. I could not get out of bed for two weeks after i got home to Australia.

    I know a lot of people say it started for them after a plane flight and my specialist says the depressurization in a plane is dramatic - equivalent to climbing howevrer many thousand feet up a mountain.

    (He also says some peope first find out they have it when they climb a high mountain.,...and drop dead at altitude. So we could be worse off)


    maybe the effect of the depressurization does something dramatic to the blood vessels like stretching them permanently out of shape..???? like odl elastic???

    I was quite thin and very fit then so it was not loss of abdo tone for me.


    this is a better link on CT
    http://www.britannica.com/EBchecked/topic/132995/connective-tissue
  20. Allyson

    Allyson *****

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    Hi thanks Sushi yes; great idea !

    We have aproached a moderator about where to put the thread too but had no reply back yet due to hols likely.

    When I first posted it i fid not give it much thought at all and it may well be misleading - sorry folks. And brevity is always an issue intitles so they fit in the header list.

    I can' t even correct my typo in it - sorry my dyspraxia !

    (That is my mis-spelling of Ehler's as Ehelrs)

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