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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. taniaaust1

    taniaaust1 Senior Member

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    nods yeah.. I also factor in those things.. eg dont plan to do as much on a hot day or plan very very little for that day. If one does a very careful pacing plan.. alll those things will be factored in.

    It seems to be harder to make myself have a crash from sitting down activities but that is only thou IF I have my legs up all the time while sitting (other wise I get quick OI and have to take legs down sitting into account). I quickly get OI within minutes if my legs are down when sitting. I have lay downs during the day on all days and probably sit around the same amount each day as my limit is quite steady (that is unless Im crashed so in bed or done something unusual).

    Heat and food worsening can be just related to low blood volume thou too so stretchy vein theory wouldnt be the only possible explaination. When you eat.. more blood goes to the digestive system (so away from other body places) and when its warmer, the blood goes more to surface of the body (Ive forgotten the whys of it thou.. maybe to try to cool u down?). Hence why they say both those things are hypovolemic POTS triggers.

    Alcohol is also a TOXIN eg like a poison to our bodies and something our bodies hence need to deal with. (in my own case a test showed Im lacking something needed to make the enzyme which detoxifies alcohol). Most of us our bodies have issues with toxins and hence why he get so many bad reactions to things such as drugs and other things.

    (Im not at all saying vasodilation isnt a cause of some things..but that there are also other possible answers which also would explain it). The blood pooling in the legs of those who have POTS.. seem to be a vasodilation issue or something else wrong with us there).
    Allyson likes this.
  2. taniaaust1

    taniaaust1 Senior Member

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    umm that is an interesting thought which Ive never considered before. Im going to be quite interested in peoples answers. It would make sense that laying down right after a meal may help some due to low blood volume or whatever.

    As long as Im not eatting foods which are bad for me.. I generally dont notice any poor effect on me after having meals but that is with one exception. There is a place in which my boyfriend and I used to eat out once per month with a group of others and a third of the time after eatting there, I'd have a collapse onto the floor on getting up to leave or have to leave early due to the OI symptoms starting happening too badly (the amount of times I had to be carried out of that place or crawling out while my partner parks in a no standing zone to pick me up from the sidewalk outside is crazy).

    I think my collapses in that place were due to combination of the POTS/OI and hence being upright sitting, eatting, listening to others (so some exertion involved in doing that, i never did much talking as too hard to follow convo), on top of that.. the place I think was often warm, thou it wasnt too bad as it wasnt a unpleasant level at all but the cooler a place is, the better my POTS is.. so basically collapse was due to a combo of triggers coming together. I try to avoid triggering POTS combos as I know combos impact me more then one trigger alone. At home I eat with my legs up.
    Allyson likes this.
  3. Allyson

    Allyson Senior Member

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    Hey Val , Thanks,,, but i should point out I don t regard OI as "simple". No-one knows the cause for one thing and it is very hard to diagnose.

    No one has said anyhting here which contradicts the posiblitly that EDS could be the csuse of ME as far as I can see. And the cause of ME is not know so it may well transpire to be due to EDS.
    Interesting that I went to a new gynaecologist the other day and when I said i had EDS she became animated and iterested" oh I have heard of that ...never had a reaction like that form a doc to ME !
  4. Allyson

    Allyson Senior Member

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    Sushi none of my symptoms were evident until I gave up coffee at age 26 when I crashed for 2 weeks and could barely get out of bed; but looking back I made lots of lifesytle choices that indicated EDS... such as not lasting at desk jobs and finding work where I could walk a lot and work shifts....ie starting late in the day or working at night. In retrospect this may have been unconscious way of adapting; ( i did have easy bruising and photophobia and hyperacousia since i was about 20 though). The crash at 26 also followed my first long haul flight to Europe and back - 20 hours or so each way... and I wonder if this worsened my EDS by damaging the blood vessels further in some way due to the depressurisation.
  5. Allyson

    Allyson Senior Member

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  6. MishMash

    MishMash *****

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    Allyson,
    I always read your posts with anticipation. Your topic still mesmerizes me, because it is so true in my case. Connective tissue disorder is at the root of what ails me. The stretchy veins causes adrenal panic, hypoperfusion to the brain, fatigue, oxidative stress, reactivity to exercise, bowel problems (starting from birth in my case), broken up sleep, etc.. I'm not sure if categorizing people by number in EDS is very helpful, because they will find there are probably hundreds of types. It seems to me more of a continuum than a point by point scale. This will just lead to people not getting diagnosed, in my opinion.

    It seems like every case of EDS has its peculiarities. The obvious crash you get after eating does not surprise me. Because I think what causes most of your reactions is an adrenal crash. The raising and lowering of the body's blood sugar is very much of a adrenal-reactive action.Probably the hypothalamus is screaming in pain. My mother used to lie down after getting out of the shower. I think that was a POTS or OI reaction.

    You obviously nailed it when you said the lack of blood perfusion to the brain has sensitized you to movement in time and space. Flying, particularly, against the path of the sun, in long haul flights, definitely impacts the EDS brain. I don't know how, but your HPA axis senses when you have lost hours in travel as you pass over time zones. I have felt these effects many times. I didn't get a permanent crash, like you did, but it was a very nasty reaction.

    I don't know where you live in Australia, but it seems like being where seasons change here it exacerbates symptoms. With the lengthening and shortening of days, my body instinctively senses the change, and I feel malaise, can't sleep, get gut problems.

    I could not understand why I would get diahrea, hemmorhoids, constipation, when I basically fasted for my entire flight. People would tell me "it's just jet lag" but it was way more than that. My brain has its own barometer and light sensor: and they are hooked directly into my adrenal glands. I guess this all falls under the heading "oxidative stress" but what do I know?

    I remember as a student always wanting to lie down while reading or studying. My father was a typical Depression era dad, where if you are not not sitting upright in a chair (of course a hard wooden chair!), you were not properly studying. I realized instinctively my problem sitting up, and laid down pretty much for all studying after high school.

    I have to say one thing that has struck me though. This is going to seem very strange but: It seems like many of the people who have EDS-like conditions seem to maintain youthful complexions as they get older. I have seen this in the skin of both men and women with this condition.

    My mother and grandmother both had your illness, and neither had any wrinkles till well into their mid-50s. Of course, they had pallid complexions, exhausted eyes, lack of circulation in cheeks. But otherwise they looked great. Their skin was very delicate and light, and never had much collagen, so there wasn't much to collpase. It just stayed perfect. People were always telling us "gee, your mother looks young."

    I also think many EDS folks have triangle-shaped faces, because many have a narrow palate roof. This is considered to be an attractive feature in women. It tends to make their eyes seem larger, which is culturally distinguished. My mother and grandmother both had this, and my father has said he found my mother attractive because of these features.

    So mabye there is one upside to being crippled with EDS. My mother, being sick with EDS, and stuck in a backwoods southern town, lucked out when my dad married her. They moved away to the big city, she got away from her oppressive family, town. So maybe EDS helped her escape.

    And I hate to say this: I noticed that many of the guys who are born with this seemed to me as more feminized or child-like in their appearance or constitiution. That is not to say they are gay or of another sexual orientation. But having EDS gives a person a soft complexion and a soft appearance. We have a friend who is a physician, and she has hyper-mobile joints, and so does her son. He has had to transfer twice because of bullying by schoolmates. So I know it can be an issue.

    I mentioned this to one of our premier ME specialist docs here, since having been to ME support group meetings, I had met many guys with this illness. I thought many of the guys were esentially "metrosexual" like myself. ie, I never met a boxer or a night club bouncer at one of those meetings. Anyway, the doc thought I was calling all male patients "weak" or "sissies". So she scolded me, told me I was all wrong, said I was negatively generalizing. This woman is very popular with ME/CFS patients, but she is still looking for a simple answer to an complex illness, and she doesn't listen to patients. Obviously I did not go back.
    Allyson likes this.
  7. Allyson

    Allyson Senior Member

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    Hi Mishma
    Thanks so much for the thoughful relpy Mish Mash,

    Yes my mother had a marked triangle shaped face and large eyes ... and she had the same illness I am now sure.
    She was always being told she looked young... like our sister rather than our mother.

    My skin fits your description too but I have rosacea as well... not sure if that fits in, have not heard it does but it is also strongly assiciated with celtic people.

    The severe jet lag is also due to the diltation of the blood vessels due to the decrease in air pressure.

    the IBS and joint pains may be more connective tissue disorders.

    As to the classification as EDS ... if it IS the same illness, at least for some of us...well that can't be helped and for me it is a greast relief to find something that logically explains almost all my symptoms. No other cause has ever been verified for ME so this has as good a chance as any IMHO.

    And the sooner we identify the cause the sooner research can be directed at treating it.

    And at least in thecase of EDS.... doctors believe in it and take it seriously ( as evidenced by my gynae's reaction) and will - - and are doing - serious research into it.
    Thanks again !
    MishMash likes this.
  8. Allyson

    Allyson Senior Member

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    Oh Mish mash, as to the continuum .....that is EXACTLY wht my doc says is the case with EDS

    I, for example, do not have hyperflexible joints at all - nor Gorlin's sign.
    All I have is stretchy veins, IBS, joint pains and lot of other things lik einterstitial cystitis.
    Most of these can be seen to be due to connective tissue disorder.

    (I also have very soft pale skin... lots of people comment on how soft it is - and I would say few wrinkles too)

    Many others may be in the same situation and the problem of diagnosis can't be helped I am afraid...as I have said, it has taken me 25 years plus of searching to find out what is wrong and if it was not for the internet and useful sites like this where people generously share their knowledge and experience I would never have discovered it at all.

    The one thing it may lead to - if enough people are identified - is genetic testing for quick and easy diagnosis, (as I had, for example, to definitively rule out coeliac disease).
    Fingers crossed !
    MishMash likes this.
  9. Allyson

    Allyson Senior Member

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    And I should as as to the misdiagnosis my Doc thinks .. and I strongly agree.. that this disease is hugely under- diagnosed as so many people mask it for years with coffee and other substances.

    My 19 point postural drop in systolic blood pressure was only detected on once occasion. All other measurements were normal.
    I trhink the drop showed u this time as I asked ot lie daown while waiting for doc and so rested recumbant for 20 mins quietly before even my lying BP was measured ....time for the adrenalin in my system form the trip to the docs to dissipate???
  10. ahimsa

    ahimsa Senior Member

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    Hi Allyson,

    I have not read all the posts in this thread (tried to skim but it's so very long) so I'm a bit confused.

    Are you saying that EDS causes ME/CFS? Or that EDS is a very common undiagnosed condition in patients with an ME/CFS diagnosis?

    There are lots of correlations between different conditions. But correlation is not necessarily causation. For example, women who have endometriosis (also very under-diagnosed) are much more likely to have ME/CFS. Does one condition cause the other? Or do both of them have a common underlying factor? (e.g., autoimmune problems?)

    I think it takes a lot of research to try to figure out these complicated questions.

    If you think you might have some kind of OI then you might want to post questions in the other forum - "Problems Standing: Orthostatic Intolerance; POTS" (see http://forums.phoenixrising.me/index.php?forums/problems-standing-orthostatic-intolerance-pots.7/ ). I seem to remember folks posting about EDS in that forum before but I can't find any links right now.

    PS. I have NMH, a type of OI, and I always rest after eating. I generally use a recliner to rest with my feet up. It's more comfortable for me than lying completely flat. It helps me a lot.
  11. Allyson

    Allyson Senior Member

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    Hi Ahims , thanks for the reply

    I am saying that at a recent international EDS conference - according to my BP specialist who is a professor in the spinal unit of a major public hospital and who attended - the symptom list of EDS type 3 overlaps greatly with M E and they seem to be thinkiong that it may be the same illness.
    the wiki page on EDS is woefully inadequte to assess this

    Also I am say ing if stratcy veins is the cause of all my sumptoms I would not be at all surprised;
    It is the ONLY thing I have heard that explains mos tof them, and very logically

    eg why heat exacerbates ME
    why standing makes us ill
    why alcohol (vasodilator) and flying ( low air pressure ) are so bad for us
    why we have photphobia - the adrenaline we release to cope with the emergency of being upright and not enought blood to the brain causes the flight or fight response - so our pupils dilate
    why we hate supermakets and especially queues...can t move fast , standing around a lot - my pulse went up a lot in the supermarket on my 48 hour halter monitor test.
    joint pain and IBS - connective tissue upsets


    I am asking others to observe themselves too and see if this could apply to them as well and if EDS could be causing ME in many of us at least.
    I would love any feed back from others
    so for nothing has made me thihk it is incorrect.

    PEM is one of the common symptoms but I do not know exactly what causes that yet...but I have it in spades.

    thanks again would love others to see if they can make the correlation

    eg you go out and eat gluten and think the gluten has made you ill the next dya when in fact it was the going out....and so on for all theo triggers to ME
    also it is the only theory tat expalins why we have normal days and bad days - for me they correlate with posture.

    you do not necessarily show a measureable drop in BP when standing because - th e adrenalin e correct si tquickly nad it is also hard to catch
    MishMash and merylg like this.
  12. MishMash

    MishMash *****

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    Allyson,
    I think you are most correct in stating that severe jet lag is due to dilation of the blood vessels due to he decrease in air pressure.

    But I spent many years flying from Honolulu to Washington DC and back. I noticed that when I flew to Hawaii, following the path of the sun, my jet lag would be much less.

    When I flew to DC, against the path of the sun, the jet lag would be horrendous. Essentially, flying over multiple time zones would cause me to feel ill for the next week or so.

    I don't quite understand it, but when my body skips over time zones, my internal clock senses it acutely. And the resulting crash would include all of the symptoms you mentioned, IBS, insomnia, cognitive issues, malaise, etc.

    --Regarding Gorlin's sign: It always seemed like it was the tough, rough neck girls who could touch their nose with the tongues. Maybe they were the only ones who wanted to show off.
    Allyson likes this.
  13. ahimsa

    ahimsa Senior Member

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    I can't speak for others but many of the items listed above, at least in my own situation, are a problem due to dropping blood pressure and/or related autonomic dysfunctions. That's why I mentioned that other PR forum that's dedicated to this topic.
    But is Orthostatic Intolerance (dropping blood pressure, increased heart rate, etc.) always caused by EDS? Do all people who have some form of OI also have EDS? And vice versa? I have no idea how much these two conditions overlap. Do you have a link to a good summary page for EDS diagnostic criteria? Thanks!
    I agree that the BP drop is very hard to catch on a BP monitor at home. But it can often be measured on a tilt table test.

    I've had two separate tilt table tests. On both tests, it took between 20 to 30 minutes then my blood pressure plummeted to something unmeasurable and I blacked out. In both tests this happened in phase one, no isoproteronol needed.

    I've had a diagnosis of Neurally Mediated Hypotension (a type of Orthostatic Intolerance) since 1995. I got my first tilt table test after reading the research by Dr. Rowe and others ( see http://jama.jamanetwork.com/article.aspx?articleid=389684 ). I only found out about this subset of ME patients because a friend of mine was in the initial study. But shortly after the study was released in 1995 there was a lot of publicity, at least in the USA, about problems with Orthostatic Intolerance in a subset of patients with an ME or CFS diagnosis. (and many Fibromyalgia patients, too)

    I've been treating this aspect of my illness by taking several prescriptions (fludrocortisone, midodrine, potassium), extra salt and water, and avoiding NMH triggers like some of the items you listed above (e.g., avoid heat, standing, etc.)
    Allyson likes this.
  14. ahimsa

    ahimsa Senior Member

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    I'm posting a response to my own question, LOL!

    A quick search found a fairly old study (1999) with the title "Orthostatic intolerance and chronic fatigue syndrome associated with Ehlers-Danlos syndrome." See http://www.ncbi.nlm.nih.gov/pubmed/10518084

    So I guess the correlation between these three conditions has been known for a while.

    And EDS was also mentioned in Dr. Rowe's 2010 webinar about Orthostatic Intolerance. I had completely forgotten about that.
    MishMash and Allyson like this.
  15. Sherrie

    Sherrie

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    Hey Allyson, I bought a laptop so I could use it in bed etc and have never been able to use it comfortably, I can only seem to be able to use a computer comfortably at my desk with my monitor raised ergonomically. I have the same trouble with books, I get very sore neck and shoulders and also my hands get very sore from trying to hold them.

  16. Allyson

    Allyson Senior Member

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    Thanks for the EDS paper Ahimsa; sorry I do not have any references ; only what my doc - a professor specialising in BP reported back to me from a recent international EDS conference, adn I am going on his opinion after seeing hunderds of patients with this and other BP disorders, plus the way it stronly correlates with my own symptoms.

    Sherrie I am unabel to sit up for any lenght of time so laptop in bed is my only option; I manage that but find reading a struggle.
  17. Allyson

    Allyson Senior Member

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    Yes thanks Mish mash; I think jet lag for everyone [ie healthy people as well] is acknowedged to be worse when flying from west to east I think; ie it is much worse for me returning to Australia from Europe than the other way.
    MishMash likes this.
  18. ukxmrv

    ukxmrv Senior Member

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    Hi Alyson,

    You said "No one has said anyhting here which contradicts the posiblitly that EDS could be the csuse of ME as far as I can see"

    The fact that EDS doesn't occur in epidemics and that ME is well documented in epidemics in the 20th century would be evidence that they are not the same thing.

    The name Myalgic Encepheomyelis comes from these epidemics and was named by the doctors who worked on them. They thought an infectious agent was at work but we still don't know which one. We don't know what caused the epidemics but a monkey experiment from the Adelaide epidemic resulted in what they thought was an infectious agent being passed onto the animal.

    As far as I know EDS doesn't do this

    I think that it is a question of the language that you are using. If you said that "EDS could be the cause of some people's chonic fatigue" I'd have no problem with that. However, if you use the term ME then you would need to prove that EDS could have directly caused epidemics such as the Royal Free outbreak.

    It may be that your EDS doctor doesn't know about the ME epidemics or he may think that ME is the same as chronic fatigue but that's just a need for education on his part.

    You haven't produced any evidence that ME (as classified by the WHO as a neurological disease) could be caused by EDS. It appears that you are trying to associate ME with CFS in all cases and maybe some people would argue CF with a blanket idea that EDS would be responsible?
  19. Esther12

    Esther12 Senior Member

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    I might just be jumping in to a thread I've not been following closely enough, but I think that there could just be a problem with semantics here.

    Someone having EDS and POTS could certainly lead to them having the symptoms of, and being diagnosed with, ME. But there's no way that everyone diagnosed with ME also has EDS and POTS. There have been studies looking at connective studies and CFS, and while the results varied,none of them were even near 50%. I think one study even found that connective tissue disorders were not more common in CFS than in the general population (in contrast to other work).
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  20. MishMash

    MishMash *****

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    There's no proof that EDS causes ME or CFS or ME/CFS. However, there is no proof that the people who fell ill in the Royal Free outbreak or in Incline Village had what many people on this site have. There have only been two or three outbreaks recorded, and we have many millions of people with ME/CFS symptoms. That should not be the case. I, personally, have heard from more people with joint hypermobility and weak connective tissue complaining of ME/CFS symptoms than I have people with proven viral-origin ME/CFS. EDS patients are frequently told by their docs that they just have chronic fatigue syndrome.

    Incline Village is at 6300 feet elevation. Air density and altitude effect people with EDS model of ME/CFS. I think those people were probably connective tissue disorder-related people, who were triggered by some infection. I think finding the reactivated EBV has muddied the waters in researching this illness, because it was seen back then as a pathogen. No one has proven it to be a pathogen. There have been many posts on this site indicating that EBV is an indicator of stress only. There was an excellent feature by the site owner, Cort, about the different reasons that can cause EBV reactivation.

    I see the EDS theory as at least as strong as the "epidemic theory" as a cause for a very large subset of ME/CFS, simply because so many people have orthostatic intolerance or POTS. This would be caused by the stretchy veins. Of course, connective tissue disorder is highly complex and subjective. There is no reliable test. Right now, we are going on a heuristic/anecdotal model-- but so are those looking for a viral origin. Also, many people with ME/CFS or FM have no viral detectable reactivations at all. The people with high titers tend to get more attention--for possibly having an acute viral infection. They are selected for anti-viral trials.

    Allyson's doctor's explanation is the most simple and plausible to me. Ockham's Razor says usually the simplest explanation is the correct one. It is the most mundane and uninteresting explanation. And I definitely say EDS only covers a significant subset of ME/CFS diagnosed cases; definitely not all. Some people will have viral-originated illness. And of course, don't forget, there are those who passionately believe that Mycoplasma is the cause ME/CFS. We forget that this was quite the rage back in the 90s. Along with other possible pathogens.
    Allyson likes this.

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