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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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    Thanks very much for this info and the videos.
    I do get ear pain to and was wondering what it was ... thought it was from the B12 IM as it seemed to coincide but it could be related to hte TMJs which I keep under control by not talking too much..

    Do you have any other symptoms that could connect you to EDS? flexible joints etc
  2. Allyson

    Allyson *****

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    One thing that strikes me is this: is there anyone who DOES NOT like down when they are crashed or crashing?
    It seems to me it is the first and most important thing we do yet we never count it a s a treatment or look at why it works to cure the crash.

    If I lie down for several day s I can guarantee I will be 100% well again.... until i get vertical again then symptoms recur. ( and sitting is as bad a standing for me)

    Nothing else is this reliable or predictable in ME...is it?
  3. merylg

    merylg Senior Member

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    Hi Allyson,
    In my case it's been a sign of deteriorating health ie that I am unable to stay upright as long as before. I'd say it's corresponding with a vascular problem ?vasculitis even, certainly also less tolerance for extremes of temperature. Lying down seems to be a coping mechanism. My energy used to be refreshed by this, but not at the moment.
    Allyson likes this.
  4. Allyson

    Allyson *****

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    Hi Thanks Meryl,
    sorry to hear that ....but that is exactly the point sadly.

    Collagen decreases as we age - that is why skin sags as one gets older

    So if we had collagen problems before, as we get older they get worse and hence, so do our symptoms.

    I just think every one lies down as a treatment - some more than others and more asewe get older - but no one talks about it or realises the connection or talks about it as a treatment.

    And I am asking people to watch it more closely to see the connection between being upright and onset of symptoms subsequently.

    And conversely , when you stay lying down do symptoms disappear eventually
  5. Sherrie

    Sherrie

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    I asked him and he sent me a copy of the results of the MRI and SPECT, it wasn't much but better then nothing :)

    I had my scan done in 2010, it's taking them a while to get enough people it seems! Maybe you should see if you can go in the fatty acid carnitine study here as well? They're doing the first part now which is just a blood test then in late Jan/early Feb they start doing the second part which involves hanging out at Uni SA for 8 hours.
    Sea likes this.
  6. Sea

    Sea Senior Member

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    I've asked about the carntine study. I can do the blood test (part A) but not the breath test (part B) because both Dr Kwiatek's study and the carnitine study want people who can stop taking any meds that might interfere. The MRI has a contrast injection and the breath test has something you have to drink, so both rule out the other. I'd definitely do it if I lived close enough to make 2 visits, but I live in NSW.

    Isn't it surprising that it is taking so long for them to get enough volunteers?
  7. merylg

    merylg Senior Member

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    Anyone reading this thread & considering they may have fragile connective tissue due to a genetic reason, should not only consider Ehler's Danlos Syndrome as a possibility. Marfan Syndrome & Loeys-Dietz Syndrome are also possibilities.

    People with Loeys-Dietz Syndrome are not necessarily hypermobile.
    One feature of Loeys-Dietz Syndrome I find interesting is:

    "Allergies to both food and things in the environment"

    From this fact sheet explaining the difference between Loeys-Dietz Syndrome and Marfan Syndrome. Why a correct diagnosis is important.

    http://www.marfan.org/cms/uploaded_files/8XJIUG81F3/89/docs/factsheet_ldsormfs.pdf

    "WHY IS IT IMPORTANT TO HAVE A CORRECT DIAGNOSIS?

    Medical care for LDS is not the same as for MFS. The most important difference is the care of the aorta and
    other blood vessels. The care is different because life-threatening aneurysms in LDS are more likely to tear
    and rupture at smaller sizes than in people who have MFS. In LDS, tears and ruptures can also happen at
    younger ages and in locations not usually seen in MFS. For these reasons, surgery to repair aneurysms is
    often done earlier in LDS. In addition, imaging tests must look at blood vessels throughout the body using
    either CT or MR scans from the top of the head to the top of the legs.
    There are other LDS medical problems not seen in MFS that need special care. These include cervical spine
    instability (slipping of the upper part of the spine), congenital heart problems (heart defects at birth), allergies,
    chronic gastrointestinal problems, rupture of the spleen and bowel, and rupture of the uterus during pregnancy.
    LDS medical problems can be managed, but a person needs a correct diagnosis to find the right LDS medical
    care and counseling."
    Allyson likes this.
  8. Allyson

    Allyson *****

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    Another reason why connective tissue issues may not cause symptoms or problems earlier in life - apart frrm caffeine masking symptoms and collagen deteriorating (further) as we age could include the fact that most people tend to lose abdominal muxcle tone as they age and do less exercise to that area. Abdo tone seems to work like compression garment to that area which is (why I think pilates is good for us...also you can like down on the floor for most or all of the classes). As the major ascending blood vessels are in the abdo they could suffer more form the lack of support. due to diminished muscle tone...just a thought.
    Als o anyhtin that is supposed to help the skin reisist ageing from lack of collagen is likely to help us too. - so oily fish, fresh coloured veges... and for women HRT. Maybe this is why pregnancy and the pill help some wome with their ME symptoms..

    Previously I had thought it was because eostrogen boosts blood volume. It may be a combination of the two things..
  9. ahimsa

    ahimsa Senior Member

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    It's definitely been interesting to learn more about EDS issues on this thread. However, I get a little confused when you say no one talks about lying down or other coping mechanisms. Patients may not talk about it in the context of EDS but they do talk about it with regard to Orthostatic Intolerance.

    The problems of being vertical (e.g. standing or sitting upright vs. reclining or lying down) are talked about quite often on this forums. In fact, there is a forum section just for this type of discussion. It's called "Problems Standing: Orthostatic Intolerance; POTS." But patients talk about these issues in other sections, too. Click here to read a recent thread in the "Latest ME/CFS Research" section.

    And even outside these forums it seems to me that ME/CFS patients, at least in the USA, are aware of the general issues with OI. For example, here's the list of articles with a keyword "orthostatic intolerance" that have been posted at the "Resarch 1st" web site - http://www.research1st.com/tag/orthostatic-intolerance/ (web site is run by the CFIDS Association of America group)

    I'm very happy for you to have found out the information about EDS! I agree that patients don't discuss EDS very much. But sometimes it sounds like you think that only patients who have gotten a diagnosis of EDS have ever thought about issues with OI. I'm sure I'm missing something.

    Maybe you could help explain a bit more what you mean when you say "no one talks about it"? Thanks.
    Allyson likes this.
  10. Allyson

    Allyson *****

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    Hi Ahims and thanks for hte reply... great to clarify

    what I mean is basiclaly my doc said it is standing up that causes all our problems ultimately, id that makes us ill

    No one ever says this and I never thought it before he said it
    Just as Dr chaeny had said we kind of somehow corrected our blood pressure which drops when we stand...so we may not show a drop on measurement because we have released adrenaline to bring th BP back up
    This adrenalin causes furhter problems ....which one can only imagine the scope of

    S0... no blood for you heart and brain any time you go upright , plus adrenalin is enough to make us very very sick, as sick as we are.

    By which I mean it is no trival thing... lack of blood to the two major organs of the body.
    Yet to my mind noone makes the connection between being upright and becominig ill the next day.
    we think it is due to exertion , but if you just stood in one place for an hour ( all te activity you did for a day) with no other exertion I bet that would make you ill.
    that is painful just to think about for us but not so for healtthy people.
    So we all know that would lie down when you crash but we do not talk about it in the lists of remedies or treatments - ie we think we are just lying down to recover or rest, but in fact at this time we get blood bsacdk to our brain and hear tna dnif we lie down long enough - I at least will make a 100 percent recovery - until the next time I stand or sit up for any lenght of time.
    So I have found rather thatn thinking of "rest" as being useful I think of going horizontal.
    eg on a good day i bought the mail in and want ot open it.
    Instead of doing it standing I lie down and do it ... or to send and sms or to get my tablets out

    thus i build up a poditiv e "bank if you like of down time and find I am less ill and save the upright time for when there is no other option
    By the same token, after standing, a slow walk is the worst exercise we can do as we ar up but nothinig is pumping much blood up to the brain while the muscles are relaxed... so that will make us more sick I am guessing that a 30 minute cylling sting where the calf muscloe are pumping blood up.

    more soon run out of train,,
    cheers and thanks again for the interest na dhelpful links
    I fell so strongly about it as this is the first thing that really it all themakrd and expalins nearly all the mysterious symptome we have
    nohting else explains photophobia nd hyperacousia , feroexample, as much as the idea of constant adrenalin releases.
    But as i said it took me a year to relaise what the doc had sied is true and it is not hte gluten i ate when I went out for example but the being upright while going out.
    merylg likes this.
  11. Allyson

    Allyson *****

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    So to clarify we talk about feeling dizzy or uncomfortable when we stand but i do not think we realise that the standing may actually be causing all our other symptoms. indeed our entire illness, and that is what i mean when I said we don t talk about that ... I see now that cvould cause confusion so thanks for clarifying.

    We always blame something else for a crash .. overexertion etc.
    if it is true and can be tested.. and i am asking people to observe themselves and see if it rings true for them and lots have said to me it does so far.... then we have something concrete to work on for a cure ... ie the lack of collagen and henc eblood vessels and ohter connective tissue that is not elastic enough.

    and something to test for ... ie the genetic links and maybe gene-targeted therapy or stem cell tranplants will work on us
    Finally it has given me more management strategies that are giving me more uptime... and I am thinking orf more and planning to write up a list for others tu have a go sat to see if it applies to them.

    eg saw a cill pillow on TAV today which could be used to cool the body quickly when we overheat.

    For this reaon if you know anyone who isn t following this thread who may be interested please PM them and ask hthem to hav e look as it seem sot me this is the most inmportant thing I have read about for us in years of research.
    And yes it may turn out that it does not apply to every on but we know we are possibly looking at a few didfferent diseases that hav not yet been sorted. Well this it the kind of major breakthrough that may help in that sorting process that needs to be done

    eg some people may find it does not apply to them at all... Ok but please try it out first an give us some feedback before dismissing it blindly.
  12. ahimsa

    ahimsa Senior Member

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    This may be a new concept for you but I assure you that it is not a new concept for me.

    Yes, standing still causes horrible symptoms the next day. I know about this on a visceral level because I was forced to stand still for the tilt table test (also called head-up tilt). I felt like I had been run over by a truck the next day.

    I'm sure it's not intentional but many of the phrases in your posts make it sound like this is a brand new concept for everyone. It is not.

    If you had said, "I did not make the connection between being upright and becoming ill the next day" then that would have been clear. If you had said, "some people do not make the connection between being upright and becoming ill the next day" then that's also true. And if you were to say, "many doctors do not make the connection between being upright and becoming ill the next day" then I would also agree. Doctors are often ignorant about Orthostatic Intolerance (POTS/NMH).

    But when you say "no one makes the connection between being upright and becoming ill the next day" then I must politely disagree.

    Lots of doctors doing medical research, including the Johns Hopkins folks who published a paper back in 1995, have pointed out this connection (symptoms lasting 24-72 hours after NMH or POTS triggers -- standing is one of those triggers). After my first tilt table test (back in 1995) I got a "crash course" (bad pun :rolleyes: ) on this connection between standing and a crash on the next day. And in the years between 1995 and today, quite a few other patients have made this same discovery.

    I hope this makes sense and does not sound too nit picky. I just think it's important that we don't invalidate the experience of all those patients who really do understand this connection between standing and feeling crappy the next day.

    Again, I'm so sorry that your doctors did not help you to see this connection earlier.

    Edited to add: I'm not trying to say that standing too much is the only reason that someone might "crash" the next day. But it is a well known reason for a crash. It's not something brand new.
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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Allyson

    I also agree that, while standing causes many of us problems (not all of us), it is only one factor of many that causes difficulties.

    Re: people discussing standing as an issue, you might enjoy this article written by Cort in 2005:
    https://www.facebook.com/notes/dysa...chronic-fatigue-syndromestand/252527614824382

    It is probably buried in the archives here too, but this is the link that I have.

    Sushi
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  14. alex3619

    alex3619 Senior Member

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    I was reading an historical ME blog somewhere a year or two back. They listed something over fifty ME outbreaks, and potentially over 100 though the rest were not really investigated. It wasn't two or three. There have been two in Australia alone. Are you including those?

    We forget about these outbreaks. They were largely ignored. In New Zealand they had the Tapanui Flu outbreak. Thats just one country.

    I have yet to read this whole thread, I am only up to the MishMash post. Currently I think EDS could define a subset of ME. However I do wonder if most with ME have something similar. We have vasoregulation problems. We have elevated elastase in ME which might cause the blood vessels to be stiff and unable to exand. Thats not EDS, but the net result to blood supply regulation would be similar - a reduced capacity to compensate for changes in blood supply and pressure.

    I hope to say more when I have finished reading this thread. My best current guess is that even ME is at least two different diseases, while CFS could be a whole lot of diseases (depending on definition used). EDS could well underlie one of those two groups in ME.

    The other possibility that comes to mind is that if ME symptoms are derived in part from disease induced changes in blood vessel regulation, having EDS at the same time will massively increase the risk factor for getting ME. It also might increase the severity of the disease.

    Bye, Alex

    PS For a long time I have wondered if ME might occur much more often when pathogens cross the blood brain barrier. If connective tissue disorders facilitate this, then the risk factor would be multiplied in EDS patients and other disorders that might weaken the BBB. That would mean EDS is probably not a cause, but its a major predisposing factor. It might also mean that many with EDS might really have the same ME as the rest, just be a different subgroup, just as we might have Lyme subgroups or HHV6 subgroups.
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  15. ukxmrv

    ukxmrv Senior Member

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  16. alex3619

    alex3619 Senior Member

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    There is some evidence that ME is indeed blood transmissable. This goes back to 1955, when it was shown it was probably transmissable to animals. Mice died, monkeys developed spinal ganglia lesions similar to that found in ME today. Others have noted the high history of blood transfusions before developing ME. Similarly a huge number of outbreaks closely parallel polio outbreaks. That doesn't tell you that polio or enteroviruses were a cause, but its still a clue.

    However there has to be a reason why ninety percent of those who get post viral fatigue do not go on to get ME. There have to be risk factors that modify the response. Many years ago I proposed the two hit hypotheses which at the time was resoundingly rejected in the circles in which I was debating these issues. Its not one thing its two that co-occur, or sequentially occur, though of course it could be more than two things that co-occur. One such combination could involve connective dissue damage, whether from genetics, disease or injury. This was in fact the origin of when I was considering the possibility that a failure of the blood brain barrier might be an important step for many of us.This might link EDS to those who get ME etc. following a car injury for example.

    Bye, Alex
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  17. alex3619

    alex3619 Senior Member

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    Let me add one more confounding thought. What is the common link between the methylation threads and this one? Vasoregulation. Methylation issues can lead to depletion of adenosyl cobalamin, and tetrahydrobiopterin (BH4). These are now suspected to be critical in making nitric oxide, and with deficiency possibly lead to production of peroxynitrite instead of NO. That means that vasodilation is strictly limited. What compensatory blood vessel restructuring or alterations in blood vessel regulation might that induce? I cannot answer that yet, but the idea intrigues me.

    So EDS, ME, methylation issues all lead to failure in blood vessel regulation. I think thats a clue.

    One thing we do know from blood vessel study by Vance Spence et. al. We have an exaggerated actylcholine response. That normally results in increased NO and hence vasodilation. However if we are BH4 or adenosyl cobalamin deficient it might drive oxidative stress instead.

    Bye, Alex
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  18. taniaaust1

    taniaaust1 Senior Member

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    Alex, from what I recall there has actually been 3 documented outbreaks in Australia, one in WA and 2 in SA (one in Goolwa and the other in Brighton)
    alex3619 likes this.
  19. taniaaust1

    taniaaust1 Senior Member

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    Ive always viewed laying down as part of ME "treatment" and there certainly is next day effects to standing (I made the colleration only in the past 12 months..before that I thought only physically doing things could cause a next day crash for me).
    Allyson likes this.
  20. justy

    justy Senior Member

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    I dont really seem to have this very strong correlation between upright and crashes etc. I am not a POTSY type at all. as long as i am sitting and resting i am ok, slow walking is fine. For me it is any overactivity that causes the crashes, including exercise whilst reclining and also mental exercise. When i was at my most severe 5 minutes on a computer laying down made me so ill i would have to sleep to recover.

    I dont have ANY of the main symptoms of EDS, (hypermobile joints or elastic stretchy skin etc) so whilst i think that the conditions could overlap, i do not think that EDS is the 'cause' of M.E for more than a handful who have been misdiagnosed.

    I have laways ben interested in the difference between the M.E types with POTS, NMH etc and those who dont have it like myself. I do think there is some kind of blood regulation issue in M.E, but that it is different to POTS etc. -sorry not expalining myself well right now, feeling sick for days and its getting to me.

    On a completely different note a question about a strange symptom i have has popped into my head while reading through this thread. Does nayone else get severe pains in their legs as soon as they drink even a small amount of alcohol? could this be to do with the bood vessels dilating. 9i dont drink anymore so its not an issue, butcant find anyhting on the interent about it.

    all the best, Justy x
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