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Never Ask Us if We're Hungry -- The Answer's Always No
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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. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Gee, House is right with us tonight--now they have a possible POTS patient and they actually mentioned POTS! POTS and Ehlers-Danlos in one evening House marathon!

    Sushi

    Now House has a patient with Sympathic Overdrive. Of course, the sad thing is that they are choosing these diagnoses because they are exotic--no one has ever heard of them!
    MishMash, Allyson and merylg like this.
  2. Allyson

    Allyson Senior Member

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    Wow that is great

    I just asked a friend who watches it and she said it was a great show so I will order the series now on DVD .
    I need somehting good to watch after I finish 30 rock anyway

    Thanks for the tip Sushi.
    MishMash likes this.
  3. Allyson

    Allyson Senior Member

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    Hi Ahimsa and thank indeed for the thoughtful post.

    with me I have very few symptoms ot OI dare I say?
    I have no nausea and only occasional feelings of loss of balance really - often when I first stand up in the morning

    But I am very uncomfotable most of the time standing up or sitting up. I don t know how to explain that feeling other than a voice in my head seems to be saying "you should be lying down" - not an audible voice so a thought perhaps is more accurate- at the same time as I am thinking "great I feel OK and I want to tidy the house " If i stay up though and tidy the house, ( ie, go against that quiet voice/thought) I can be guaranteed of payback the next day - severity proportional to the length of time i stayed up - not how hard i worked , it seems to me anyway.
    Also I look at people sitting at a desk workin on tle and aqdmire and envy them - for being able to sit up like that.
    And the same if I see people standing up for any lenght of time - even on tv - i want to offer them a chair, like you would want to offer a bandage to someone who was say bleeding profusely with no assistance -on tv.

    When I told my neurolgist this - that i always feel th urge to lie down - he immediately ordered a MRI scan with contrast looking for CSF leaks.

    So the fact that i can then be diagnosed as having had OI all these years means if I can have it and not know about it then so can others it seems to me.

    .....losing my train of thought here so will sign off til tomorrow maybe.
    best,
    Ally
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  4. Allyson

    Allyson Senior Member

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    I suppose I should say on reflection of why an illness may show no signs for many years that a lot of illnesses are like this and often show no apparent signs until (early or late) adulthood: MS, Parkinsons, Huntingtons, Motor neurone disease. I am sure there are more...well even type 2 diabeties.? and sometimes type 1 diabeties too....and ME?.

    I think in retrospect there are signs for some but they are not picked up until after the disease manifests in most cases.
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  5. Allyson

    Allyson Senior Member

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  6. kurt

    kurt Senior Member

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    Sorry I have not read this entire thread so don't know if this has been mentioned but BV regulation is an HPA function, and might very well be downstream of a primary HPA dysregulation problem, particularly problems with the hypothalamus.

    I have serious problems with low BV symptoms, OI, etc, and treat that successfully with a few natural supplements. The theory I am following is that most CFS patients have ACE Deletion SNP and as a result do not regulate sodium properly when the hypothalamus is under stress (we dehydrate when we have sickness or stress). This however can be at least partly treated with bioflavonoids as they inhibit angiotensin-mediated blood vessel contraction. In other words, something as simple as Ester-C (which supports the adrenals and also contains bioflavonoids) and Cinnamon (a powerful blood vessel relaxant) can support increased BV. But this only works if you are also improving the sodium levels, so oral rehydration is important. I have written up a protocol I am following and am happy to email to anyone with CFS.

    Credit goes to the late Rich VanK for the discovery that most CFS patients have the ACE deletion, that was the strongest single SNP problem in an early study he shared of his methylation protocol.
  7. GracieJ

    GracieJ Senior Member

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    That explains so much! Would you mind e-mailing me that protocol? Thanks in advance!
  8. MishMash

    MishMash *****

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    Ally,
    Your EDS etiology for many cases of ME, and probably the neuro-immune ones mentioned above, is still the most compelling in my book. I believe in much of Rich VanK's theory (it's posted on this web site, for anybody who wants to read it), and he said many times it is just his hypothesis. He wasn't a stubborn or arrogant man. He was open to flexibility and change.

    I think there is no doubt we have oxidative stress and glutathione depletion, as Dr. Rich said. This was the critical part of his hypothesis. It could very well be that EDS (and/or other CTDs) are the cause of oxidative stress and glutathione depletion. In that CTDs would result in elevated cytokines, cortisol, which would further weaken critical collagen, tissues in the body, and cause further hypoperfusion to the brain, resulting in neurological damage, malfunction. This is just my opinion though.
    Allyson likes this.
  9. MishMash

    MishMash *****

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    Sushi,
    In many diseases, people have hidden conditions, or predispositions, developing in their bodies for many years before suddenly turning into a chronic (or sometimes acutely fatal) disease. This article was in the NY Times, about the cardiovascular health of young 18-year old draftees during the Korean War.

    I don't know if you remember, but back in the 60s and 70s it was actually much more common for men to just keel over dead from a massive heart attack. The fact these soldiers had no symptoms, possibility until some traumatic event, or over exertion, means they went from a totally "latent period" (no symptoms) to a very "acute phase" (dead from a heart attack) within minutes.

    I think the same principle applies to Ally's contentiont that EDS lurks as the genesis of many ME cases. One minute you are a war veteran, completely asymptomatic, and the next minute you are either very sick or dead. In fact, it is probably quite common in medicine.

    Allyson likes this.
  10. Allyson

    Allyson Senior Member

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    Missing early symptoms

    I was thinking about what a few people have mentioned about why if the disease is congenital we show no symptoms early in life. (And thanks for that similar thought and interesting article Mishmash.)

    Looking back there were things that maybe were indicators that were subtle that we missed

    For example I love the violin and twice started lessons and wanted to play and each time stopped and I am not sure why

    In retrospect that would be the worst insturment for someone with stretchy viens - you have to stand up for long time, stand still and worse, your arms are up above your shoulders all that time - more blood pressure needed to pump against gravity. Ouch


    I never liked getting up in the morning

    but when I did get up I was often strangely "sparky" - not grouchy like some people are- maybe the adrenalin surge I needed to get up and stay up caused that.

    Also we have no compass to compare how we feel with how others feel; so I used to do a fairly long walk to school and back and never felt great on that - but had nothing to compare it with.

    In school I was always clowning about and calling out witty - (I hope) comments - (well the other kids always laughed). I could never just sit there and listen though I was a very bright student and got good grades.

    So again i wonder if that was the adrenalin needed to keep me upright altering my behaviour as I was trapped and coudn t move out of my chair. ( I don t think they make kids sit till like that naymore which is good. Ironic - all those years forced to stay still and keep quiet then when you are an an adult you need to exercise more and talk more !)

    To this day i would prefer to walk than stand still, prefer to cycle that walk or drive (even though I crash after all those activities now)
    Also I mentioned earlier how I gave up 3 good well- paying sedentary josbs when I started work to take on a job where I was walkig a good deal of the time ... n idea i was il, but stayihg still just did not suit me it seems. I have never been able to stay at a desk job.
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  11. Allyson

    Allyson Senior Member

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    Crash definition

    this probably belongs in another thread but I will start it here and see where it goes.

    Has anyone defined the different things we call crashes and PEM?

    Eg a crash after a normal day versus a crash after exercise or exertion; what we call a crash also when we really mean that we just start to get tired and bomb out during an activity but recover form in a few housrs with rest.....
    All these are fdiffernent things and PEM another I think....
    Brain fog .. isit ana essential part of a crash?
    Or something inits owne right?


    Any thoughts?
    MishMash likes this.
  12. ukxmrv

    ukxmrv Senior Member

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    Allyson,

    That's where reading the works of the original ME doctors would help people maybe?

    For example Dr Ramsay described in the original ME patients an abnormal response to exercise and an abnormal recovery from exercise. He spoke of people needing 24+ hours to recover. In some of his patients the full effects of the exercise wouldn't be felt by then. It could take days to get to the worse parts and days (if not weeks/months) to recover.

    He wrote about how exercise response could be culmulative in his patients so if they did further exercise within the recovery period they would get even worse and take longer.

    He said that this was the hallmark of the disease. I was unlucky enough to have ME when he was still alive and could be seen at lectures/consulted with and he answered letters of mine.

    A ME patient doesn't recover with a few hours of rest. They don't feel better after a nights rest. They could feel worse and worse until it hits a peak at 24/28/72 hours and then feel awful for more days etc.

    This is Ramsay ME though just in case someone with a CFS dx or another dx is wondering. I'm just describing his patients and not trying to put down or upset any other group.

    He also wrote about waking from sleep not refreshed. ME patients (the original Ramsay ones) didn't have bright mornings. There are always exceptions though and that's where seeing a ME doc for a ME dx was useful.

    That's where maybe the EDS patients could be seperated from the ME depending on if your experience is typical? There's no reason why people can't have both of course and that's where a good ME doc would be best.

    If you have a read of the work done by Klimas, the Lights and the Pacific labs you'll get lots of info on CFS and crashing. For myself getting tired or bombing out don't go near as a description of what happens to me with exercise - during or after.
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  13. Allyson

    Allyson Senior Member

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    Hi Thanks XRMV but you have missed my point a little

    I know that we do not recover from a crash quickly

    what i meant by that people sometimes use the sword crash indiscriinately to cover a lot of things

    and has anyone tried to study, name and define the various different advers reactions we have

    for eample i have heard -and said myself - "I did this for 2 hours then crashed out a bit" - meaning in my case that I felt a bit lousy and tired and rested til i felt more able to do something again

    Now this is a completely different thing from what we usually mean by a crash - ie being totally debilitated, often with brain fog , a adn PEM and lasting one to several days often

    so I mean has any one studied and defined "crash" or given it or its components a medical name

    Exercise will make us craxh but so will ohter things,
    what part does say, dehydraton play?
    hot weather?

    so is PEM included in the term crash ... or is it a separate think
    can you ever have PEM without a crash - ie all the other things say like brain fog
    can you have ...
    a crash without PEM?
    anything without brain fog?

    So I mean basic but real studies to separate and define the different manifestiations of the disease, when they occur , what causes them.

    In effect I suppose breaking them down into components and identifying each and what causes or seems to cause each.
    ( I think unrefresshing sleep - which I also dsuffer rom as well as all the ohter ME syumptoms - is a separate issue ... though i tmay not be; no- oneKNOWS thE cause of that I do not think.

    And, no , I have not read all the medical literature ever written on ME/cfs and i doubt anyone has or ever will.

    I most certainly will not be able to - so that is why I a asking for informed advice and opinions here.

    many thanks again for the input, that helps me clarify the question for others too
    best,
    Ally
    MishMash likes this.
  14. Allyson

    Allyson Senior Member

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    MAYBE so Sushi,

    but it is good that they are being mentioned at least

    Greg Page the yellow wiggle was mentioned her i the newspaper the other day as having retired in 2006 with "Orthostatic Intolerance."

    First time i have seen that term used in mainstream press or in association with him.

    Larry David's "Curb your Enthusiasm" - apart from being great comedy - has all kinds of people with illnesses and disabilities and even body sizes in it which makes it a refreshing change from the usual steriotypes we see on tv too.
    i have ordered the complete series of House MD - hear it is good viewing too so thanks for the tip.
    best,
    ALly
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  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Greg Page was headline news even in the States when he had to retire due to dysautonomia. He used to be on a forum I was on and I PMed with him a few times. At that time, I could get people to understand a little about my illness just by saying I had "the Wiggles Disease" and they knew what I meant.

    He has also been interviewed about his illness several times on ABC news Australia. I remember following his progress through these interviews.

    Sushi
  16. Allyson

    Allyson Senior Member

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    Thanks Sushi,

    I missed that interesting info.
    I think it was before my diagnosis

    i saw the same cardiologist he saw tho and would NOT recommend her - very patronising.

    she told me the disease was:

    1. caused by any illness of 2 weeks or more (and hence the time spent in bed plays havoc with your BP).

    2. Pychosomatic

    Which is it , Sue? ... they are two different things.

    She then told me the "cure" was to get up every day for 21 days and HAVE A HOT SHOWER and stay up all day.....

    No wonder the poor bloke never got any better.....

    Oh and she didn't believe in cfs at at all. ! That would help.

    (I could go on... like about how she took my standing BPs - with no support in sight - while asking me offensive personal questions about my then recent divorce - then declared I had HIGH PB and then tried to prescibe me anti-hypertensives. (My PB usually sits at 120/70.)
    Poor Greg, hope he found another doctor.
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  17. Allyson

    Allyson Senior Member

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    Again, Johhnyboy i would ask what do you mean by a hot summers day?

    I am guessing that is what we here would call average without meaning to be rude
    A hot day for us is 40 degrees celcius
    worse is five of those days in a row - has happened 6 years ago here or close to it.

    so maybe when we talk about heat intolerance we should include a scale of some kind???
  18. Allyson

    Allyson Senior Member

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    Strange little symptoms

    the CTD theory also goes some way to explaing two strange symptoms I have that I have seen listed as ME symptoms

    1 Scabbing scalp wounds
    2 Pimple-like rash on upper arms that comes and goes - sometimes disappears overnight but can stay there for day sor weeks.

    apparently one of the side effects of midrodine is an itchy scalp
    as midrodine is like one part of the adrenaline - alpha or beta forgotten which

    anyway it is te half that makes your hair stand on end when you get a fright

    so maybe the constant adrenaline release theory of EDS 3 accounts for those two things

    that nothing else does that i have heard
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  19. jonnyboy

    jonnyboy

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    Hi Allyson, ur right its not that hot the majority of the time in the UK. Maybe gets to around 30c in the summer at times. But as a former athlete I used to go to warmer climates for warm weather training camps twice a year. Extreme heat like 40c or over did not really bother me, actually enjoyed it.

    Its cold I simply can't tolerate. Never liked it all when healthy. I always felt it more than my friends. As a student it was a source of arguments between myself and housemates as I always had the heating up higher than they would tolerate. My tolerance for the cold has only got worse since I've been unwell. I was wrapped up well indoors with a hot water bottle even when the outside temp was high 20s this year.
  20. Allyson

    Allyson Senior Member

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    Cool thanks Johnny boy

    anyone else affected by the heat ... or not?

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