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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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  3. Allyson

    Allyson *****

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  4. Shell

    Shell Senior Member

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    Allyson likes this.
  5. ahimsa

    ahimsa Senior Member

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    Allyson, I noticed a couple of sentences in a recent post which seem to differ from some of your previous statements that OI is always caused by EDS.
    (my bolding)

    So, does this mean that you now agree that these are overlapping conditions but not identical conditions?

    A person could have EDS but not Orthostatic Intolerance (either POTS or some other type of OI). Or a person could have OI but not EDS. Or a person could have both.

    I believe the same thing applies to ME/CFS and EDS. A patient can one or the other or both.

    I believe that the current state of the science is that these are three overlapping conditions and not all three the same thing. Since pictures often clarify things better than words, here's a diagram from Dr. Rowe's 2010 webinar (he uses the term CFS):

    EDS-OI-CFS.png
    [ Click to make it bigger ]

    I hope this is helpful!
    Valentijn and Sushi like this.
  6. Allyson

    Allyson *****

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    HI Ahimsa - thanks for ther feed back

    they are not my statements i am fairly sure but quotes i have included.

    I am no expert on any of these illnesses by any stretch alas so cannot answer that question.

    I don not think i have ever stated that they were the same thing or had exclusive and clearly delineated boundaries.

    There is a huge amount of symptom overlap and just not enough research has been done into any of the conditions to answer that either i do not think. AnD too many people remain undianosed - a bit of a visious circle.

    The thrust of my thinking here has been to ask people to re-consider ( ie think about - nothing more than that ) their ME symtoms and see if they could be caused by EDS.

    EDS research is itself in a state of flux and as for ME people take up to 30 years to get diagnosis so acurate data is sadly lacking on that front

    Finally that Rowe diagram is now many years old - about 1992 from memory maybe a bit later.
    I am not up with his currnt researh though i know John Hopkins Uni is still keenly interested - you might ccontact them perhaps for theiri latest research and publications list to see where they currently stand to get some independent expert opinion.

    just this morning for example and by chance though someone I do not know posted on an ME fb site this quote after receiving a new diagnosis by a geneticist:.

    "As far as I'm aware, connective tissue is found throughout the body, in skin, ligaments and tendons, around organs, there's apparently a lot of it in the heart. When it's normal, it should hold things in place, and not allow things to move and stretch more than is helpful. Signs of a CTD can include stretchy skin, bruising easily, joins that dislocate easily, transparent skin, abnormal stretch marks, and it can also cause other problems, of most concern is the chance of structural heart issues such as mitral valve prolapse. In my body, it also seems to have caused a great deal of my digestive issues. There are a high number of people diagnosed with a CTD that also receive diagnoses of ME/CFS/Fibro and POTS."



    Thanks again for the input.

    Ally
  7. Allyson

    Allyson *****

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    Thanks shell,

    what is Dysatonomia prison please?
    ( sounds like hell )
  8. Allyson

    Allyson *****

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  9. ukxmrv

    ukxmrv Senior Member

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    I wonder Allyson, if you would consider changing your heading?

    Also it would help if you could to refer to ME or to CFS or CF if that is what you mean.

    Can't help feeling that this thread goes around in circles. We have already agreed have we not ? that EDS doesn't cause epidemics so was not responsible for ME (as defined by Ramsay).
    Valentijn likes this.
  10. VeganMonkey

    VeganMonkey Senior Member

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    /ukxmrv this thread is not going around in circles, this thread is meant to collect info about EDS. some people with ME/CFS have EDS so it's very helpful in my opinion. Some years ago a couple of people on a chronic illness forum (that included CFS as well) suggested I got tested for EDS and I didn't listen, thought I couldn't have that but now my CFS specialist sent me to the EDS clinic so it's definitely useful for me.
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  11. Allyson

    Allyson *****

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    Quite agree UKXRMV, Ithink i agree with what othrs have said that "CFS" tends to be a waste basket definition for a possiibly large number of diseases that have not been adequately diagnosed or even researched.

    I have had some wonderful doctors I am lucky to be able to say but no-one has time to do the 5 hour intreview that it would take do do a thourh history - taking in all your past history huge range of current symptoms family hisitory and medactions tried and their effects or lack thereof, accurate blood pressure measurements etc.

    FOr example as i posted elsewhere recently - some definitions of ME include PEM and some do not.

    some people have good day and good hours some people feel their disease began at the same time or subsequent to an assumed viral illness- many, many others do not.

    Some have gradual onset, some sudden. Some have nausea and vomiting , others never do; some can walk and even work full time. others are house bound or even bed bound....are we all talking about the same illness on this forum? I don't think anyone knows the asnwer to that yet and it iwll take a great deal of research to establish it.

    There is no cure; no definite causative pathogen has been identified in all of us.
    So if there is a chance that it is gentic in origin for some of us . I for one and keen to investigate that avenue, just as you are welcome to pursue XRMV as a putative causal agent.

    In 2- 3 years time there will be gentic testing available that will perhaps differentiate some of us; I would like to be up high on the waiting list for that testing an any eppigentic treatments that may result.

    Is Lyme disease the cause of ME? Many seem to be asking that and i am also having testing for Lyme.
    Yes many people use the terms ME/ CFS /CF indiscrimitely unfortunately and i think that results form the above messy situation.

    Many doctors have never heard of the term ME !!! About one in 5 of the doctors that come to my home know what i mean when i say ME or spell it out - most have no idea..... but all have heard of CFS.
    If I am quoting someone else and they have used CFS i will include that term though ME is the name used in the 2011 Consensus document and the term i prefer.

    The fact is there is sadly still no known or proven cause or sure for this illness or group of illnesses. Otherwise we would not be here.. Some are sure XRMV is the cause, some are sure EDS is NOT the cause ... we do not have sufficient evidence to make an informed decision either way is what I think.

    I do not believe the evidence is there for XRMV - after many years of research into it - but i do not presume to ask anyone to alter remove or limit their posts - or indeed almost entire forums that are devoted to it - in discussing that issue.

    So far this post has had over 22, 000 hits so some people are interested in the question .....and I know of at least 30 people already who thought they had ME/cfs (the term used on the official Australian website) who have now had an EDS diagnosis- instead of /as well as, so I think it is a relevant and useful question to ask and to discuss......and heavens knows, we have the time!


    best,
    Ally
  12. Allyson

    Allyson *****

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    Thanks VM.

    yes I am finding people are providing some very helpful info here too - thanks to everyone who has posted articles and info and feedback. It has all been very informative andi am learning a lot.

    As David Suzuki says - it is not scientific to dismiss a topic or quetion out of hand as having no MERIT without investigating it first. So if you do not think it is true or possible, investigate it and prove that, then dismis it as untrue, when you have the facts to back it up..

    Best,
    ALly
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  13. Allyson

    Allyson *****

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    VM I think it was you who asked aobut walking so here are my thought on walking

    I realise lots of people can do no exercise and some cnat tdo some types - I am likited too

    SO this is an ideal picture and if you cannot do any of it or do not want to ....dont,.... please ignore.

    I am not recommending exercise either - but i enjoy in and would like to do it so here goes.

    I hve been putting it off as i want to get it right but ill not get it right so here are my current thought and i hope thy help

    - see next post

    A
  14. Allyson

    Allyson *****

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    The principles of OI - if it is caused by EDS would lead to these conclusios for exercise these are really mostly my informed guesses with some info from books and doctors

    For me recumbant exercise is better thatn anything uprigight

    My doctold me walking it ther worst thnk you can do if you have OI - and that is quite logical

    If wen you stand up the body has trouble getting blood to the heart and brain that is already putting great stress on the body

    the last thing you would want to do is cardio exercise that requires even more blood to get to the heart and quickly

    also the things that may hlep blood circulatio are increased abdominal tone and increased leg muscle tone - esp the calves.
    so may be something like pilates - most of which you can de recumbant and it has all kinds of levels form very very easy up to impossible!

    A whole class might b e too much to start with - you could go to a class - as i do and talk to the teacher first - then i lie down nadn do all the exercises i feel like. If i get tired i just rest on the floor - i stay at the back so as not to disrupt anyone. I go to a class a s don t do it at home otherwise bit if you do -there are a coule of tv shows on channel 32 that hav epiltates classes youcould wathcc for ideas.

    write down the exercises you like and do them in 5 minute lots throughtout the day - some fo thema re very enjoyable.

    i will cover woking inthe nest post so this is not too long.

    A
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  15. Allyson

    Allyson *****

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    if you really feel like a walk her are some ideas that might minimise damage

    1 stay cool - so do not do it if it i really hot - this causes vasodialtaion and exercise involves, ipso facto, peripheral dilatation so you are going to "run out of blood bvolume" as it were and feel it then and or later by crashing

    2 wear comprssion garments around the abdo and legs at least down to the calves - again this is a balance between staying cool - some sportwear now is both compression and cooling - top league footballers and other atheltes are wearing comprssion garments and using refrigeration units to sit in in the breaks to stay cool so presumably it has some positive effect for them too.

    3 be well hydrated - pref with elctrolytes - before, during and after the walk

    so you could eg take an iced water bottle and drink it as it melts and hold it against you to keep you cool.
    or you can buy coolling esky clothing - like vests that strap on you t to keep you cool; or buy a freezer ice-pack thing ( for sports injuries) and tuck that into your clothing on the abdominal area. that is where the large blood vessels are and where most of the pooling of blood occurs when you are upright.

    Lie Down AFTERWARDS - so you are not upright. when you are peripherally vasodilated....... due to the exercise.

    or take a cool bath /cool drinks or lie down front of a fan when you return home.

    DOn Lewis in his book on "CFS" says that anything in water is good for us.

    the water pressure forces fluid from the lymph sytem back ito the venous blood supply so it boosts blood volume.

    it is also gentle as you are supported inthe water and it keeps you cool - win win win

    plus it is very enjoyable once you get past the hassle of getting there

    I keep a bag ready packed wiht bathers cap shampoos soap etc

    but i am considering advice too to get into your togs first so you just get there and get inthe water, put a tracksuti on over your wet togs afterwards n come home for your bath afterwards and standinng in the showers there can be difficult. Also the shower rooms ar hot and steamy which is not good and arms up over thehead to wash your hair si taxing on the blood suuppy again - why i never became a violinist i new realise.

    sitting in the water on a flotation device like a noodle is very cooling an relaxining and a great way to keep cool in summer too.

    i always find i sleep well after an evening aquaaerobics class.

    other things you could consider are some light weights and lying on the floor do them t home- agian a tv shoew or dvd or go to a few classes and take it easy while you learn what moves you like.

    In a pump class i avoid squat and lunges but do the bench presses and tricap and biceps

    again talk to the instructor first so they know what you plan to do - a good one will never push you to do too much if you let them know - quite the opposite.

    hope that is a good start - when i think of more i will post them .....or it others have andy ideas too that would be most .

    cheers,
    Ally
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  16. VeganMonkey

    VeganMonkey Senior Member

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    The only problem is that I can't tolerate cold, which is weird for a POTSy person! So swimming pools make me feel sick from the cold. We have a pool here which is warm but still too cold for me. Of course overheating causes trouble for me too like for any other POTSy person, so I'm very careful with warm baths so they aren't too hot. Cold makes my joints hurt and my toes go black, really weird. And my skin feels like it got burned.
    I use compression stockings, but at home they don't make a difference, I think because I lie down a lot. I also bought a compression thing for my body but it hurts my stomach. Anything tight around the waist area hurts, maybe because of IBS? But a clingy top doesn't hurt, but is that enough?
  17. Shell

    Shell Senior Member

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    I can't tolerate cold either. I have Raynauds, which going by your description you seem to have also.
    But the other thing with "black" feet, as I am finding , is blood pooling. My feet go dark purple most days now regardless of temp and I am getting a most attractive purple blotchy rash up to my knees, which also turn purple. I think this is more the dysautonomia IST (possibly POTS too) side of things.
    Of course the other thing is we have ME and we all know what a shambolic pile of symptoms that gives us.

    Good luck.
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  18. Allyson

    Allyson *****

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    Hey Shell one ofthe docs who came her one day had a CTD too - so he knew all about it - he has Reynauds and was on a drug that helped - possibly propranolol or maybe nifedipine - i think the latter but wrote it down as reynauds is an EDS sympotm too so if youwon it can chek - he says it helps

    no i don t like cold water either - i go to an indoor heated pool
  19. Allyson

    Allyson *****

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    no te compression is better not too tight - NOT spanx or anything like that - jsut clingy lycra - it even seems to elp o my arms like a clinngy light cardy

    i think that may be due to the lymphatic issue asgin - if you have everhad lsympahtic massage it is very light a- ans amazingly effectice - not deep like a swedish or deep tissue massage but you feel better afterwards.

    at our poot the spa thermostat used to be broken so it waa nver very hot - so i would go in there for 10 mins thenthe pool for 10 mins nad that worked well - now it is fied and very hot - used it once and crashed like hell the next day,

    cheers

    ALly
  20. Allyson

    Allyson *****

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    VM i also posted some wlking tips above incase you missed them

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