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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. ahimsa

    ahimsa Senior Member

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    These are useful tips.

    But most of these, minus the stem cell therapy, sound like the same suggestions that I have seen for years on how to deal with symptoms from Orthostatic Intolerance. For example, most of these have been posted on the forum section for OI.

    And here's an excerpt from the Johns Hopkins patient handout on Orthostatic Intolerance:
    [note - I copied only the highlights, see the full document for details]
    It sounds like you are framing your suggestions as treatment for EDS vs. treatments for OI. I understood Sushi's post about things that were specific to EDS (e.g., not overstretching) and your comments about maybe EDS affecting the gut or causing IBS.

    But I don't understand why you are listing known treatments for OI as treatments specifically aimed at EDS. What am I missing?
     
  2. justy

    justy Senior Member

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    Hi Allyson, thanks for all your suggestions. For me, as i have said, laying down is not significantly better than sitting. I have tried diets, and many other things besides, with very mixed results.

    I will always keep trying to find a treatment that wirks for me.
    I do not have a problem with heat, infact i find cold intolerable and need to be toasty warm all the time.

    Take care, Justy.
     
  3. jonnyboy

    jonnyboy

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    Same with me too, i need to keep either well wrapped up in lots of layers or keep a hot water bottle on me most of the time. Even before i became ill, I didnt have very good tolerance for the cold, and loved the heat. On a boiling hot summer day where everyone else was hot and bothered, I actually loved it lol
     
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  4. MishMash

    MishMash *****

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    The valuable message I have taken away from Ally's posts are not just the logical treatments for OI/ POTS. It was the idea that OI/ POTS does not exist in a vacuum. The CTDs are the umbrella; POTS/OI is just one factor under that big umbrella. And aggravating POTS/ OI seems to aggravate all of the other symptoms of CTDs (also underneath the big umbrella).

    I have taken Ally's suggestions as practices to ameliorate CTD-caused ME/CFS. If it is sitting or standing on your head that helps you, I don't think anybody would object. I was personally very intrigued by Ally's cause-and-effect story though.

    Dr. Rowe, after devising the TTT, and establishing the theory of POTS/ OI did mention weak connective tissue as a genesis to all these problems. But many in the patient community seemed to have ignored his last observation; and take POTS/ OI completely out of context, as a chemical pathway disorder, immunological disorder, etc. I guess anything's possible-- but Ally sure has made an excellent case.
     
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  5. Allyson

    Allyson *****

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    One thing is would be easy to do Justy is mark in your diary any day you have a good day to keep a reord of how often and when they occur

    eg today is a good day for me - i feel perfectly normal and when I do I am symptomefree; no poly uris aor polydipsi.a..oK a little bit of dizziness when I get up.
    yesterday aI ate wheat bread and butter andall the wrong things; but I lay down most of the day.

    The thing is if those other things help that is great, but if they do not if you are like me you maay get worse as you get older ... I used to be able to sit up in a chair etc. Iused never to have dizziness, tha tdevelped later.
    So it soes not hurt to keep an eye on things form this point of view anywqy , and if CTD is the cause of your porblems the other things are unlikey to help much I guess.


    I found note s from my docs lecture and note thatthe brain has huge enery requirement and NO energy reserves... it need constant feeding ... and the blood volume drop is enormous ...something like 600 mls blood "disappeears" from circulaton when you stand up- my notes and memory are not entirely clear but that is the gist.

    All the best,
    Ally
     
  6. Allyson

    Allyson *****

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    So that is ireally intersatign Jonny boy thatnsk as heat intolerance I thought was a major problem fo ra lot of us; it may well turn out to be one of the useful indicators for deciding on sub types or variants of the illness.

    I will start a poll when I work out how but it would be interestign to see who can tolerate heat and who it bothers; It has bothered me all my life and my mother was the same.

    I will also start observing if I ever have "good days " when it is hot- I don t think so.
    I think I can pretty well guarantee on ahot day I wil be feelig bad.
    That said I dont like thcold muc either and hate being out in cold weather and have noticed this since I was about 16.
    So I think temperature regulation is a problem too, maybe a separate one to heatr intolerance.
     
  7. Allyson

    Allyson *****

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    Oh thanks Justy, that iintersting... so your symptoms are not worse int he heat.? or the next day?

    Mine become unbearable

    but ...just thought ...do you see heat over there?

    Not meaning to be rude but it was 40 degrees celcius here the other day so you may never actually see heat like that?
    [In winter i am fighting over the heater that is for sure]

    Also I recall that hernias and prolapses are part of the EDS type 111 picture and I think it would explain the gastroparesis that I think a lot of us have too - tho that is really hard to measure too
    best,
    Ally
     
  8. Allyson

    Allyson *****

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    Thanks Mish Mash,

    as usual you said it better than I ever could so thankyou.

    Yes I am finding new things that help based on this theory - thanks for the link Ahimsa too - that is very validating

    In particular I find avoiding laptop heat to the abdo by changing the pillows under it seems to be helping a lot, as does staying out of hot weather

    I had another good day today [well morning anyway}- second in 2 weeks which is a lot for me, and my mood is generally very much better now too.

    Thanks every one again for the interest and very helpful feedback.
    Ally
     
  9. justy

    justy Senior Member

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    Hi Ally - yes you are right, no 'real' hot weather here. But i was in south of France this year and loved the warmth - but i cant sit in the sun - must be in the shade. I dont really tolerate direct sunight or cold (fussy old thing me)

    I read up a lot on CTD's yesterday and noted that LUPUS (which my symptoms are very similar to), is an autoimmune CTD. I am hoping to get tested for Lupus in the new year. My crashes definately come from over exertion - i tend to have a few good days, overdo and then have a gradual crash over a week into a full crash which if i rest lots (reclining or sitting) will overcome in about 3-7 days.

    My daughter is here for Christmas - she is the one i mentioned who has been ill - much better now, still no diagnosis but still fatigue and other immune/gut problems. She has hypermobile joints. We chatted yesterday and she can bend her thumb back to touch her forearm, can almost touch her nose with her tongue, had multiple fractures and sprains as a child from simple falls etc. My youngest son has developed ankle pain (hes 12) and he often seems more tired than other children - anyway it turns out he can also touch his thumb back to his arm.

    I think if we can then genetic testing would be the best way - i dont want any of my other children to get sick as well (or at least go through the hell of no diagnosis like me and my daughter. My daughter also had fainting spells a few years back and was virutally bedbound for many months. I am going to look into private genetic testing here in the UK.

    I hope you are having a happy holiday period.
    Best wishes, Justy.x
     
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  10. Allyson

    Allyson *****

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    Hi Justy,

    sorry to hear about your kids too but feinting at that age is a classic indicator apparently.

    And with the bendy joints it sounds like it is definielty in the picture for your family.

    I will let you know if i have any luck with genetic testing here but wont be til february,

    Not that I really need it; I am sure I have it now but it would be nice to get hte gene confirmation.

    Last night I saw again the lovely French move Mic Macs and there is a contortionist in it who bends back in half; amazing; well she has the classic EDS 3 fetures - large eyes, thin lips heart shaped face and smallish ears.

    (incidentally there is a also character in it called Mishmash.....coincidence Mish if you are reading?)

    Great movie for adults and adolesent/ kids too- a sex scene or two in it but really nothing to what you see on tv every day methinks as far a akids watching it

    It got great coverage in France but very little eslewhere for some strange reason when it was released.

    And sorry to harp but i do suggest you try and note the difference between resting ....and resting recumbant and see if that helps more.
    All the best,
    Cheers,
    Ally
     
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  11. Allyson

    Allyson *****

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    hi Ahimsa and thanks for the reply and the excellent link to the John Hopins doco

    I had not seen that and it is gratifyin to see in validates my onw experiences exactly.

    (Only raising the head of the bed did not help me at all)

    I supposse what I am pointin out that is new is that I think a lot more of us have OI than are aware of it as it has sometimes few symptoms - apart from all the ME symptoms includin PEP and crashing.
    SO I guess i am agreein with my doc that faulty connective tissue could be the cause of ME for many people at least. Or of one sutb type of ME
    It seem the most logical explanantion and the only one that explains some things - like heat intorlerance , which would be unaffected if it was a mitochondrial issue. And the intermittent nature of the illness - if it is mitos, why do we have good - nay perfect days sometimes?

    also mito does not expalin hyperacousia or photophobia really to my mind but this idea does.

    Cheers and thatnks agoin for the great link.
     
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  12. Allyson

    Allyson *****

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    hi Ahimsa

    also I would like to add
    this may have been around for a while .. that is good news, it means it is not some new thing out of the blue, and others have noted the same thing

    but if it IS right and is the cause of ME for most of us , then we have something to work on for a cure

    it is something that would be easily tested in a controlled study
    but also something we can observe inourselves by observig if beinghorizontal makes us better than resting upright - the latter does not cure me at all anymore.

    So I am hoping someone will do it a prove it - or disprove it

    But I would like people to think about it seriously and observe themseves

    People are PM ing and saying "yes I am bendy" or "yes I have blackouts" ....but ....that cant be right can it as we have not heard much about it.

    it is very subtle and insidious and yet it makes us very very ill.

    Andt is not as though this line of thought is coming from, say, an astrologer; it is coming from several medical sources at the highest level.
     
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  13. Allyson

    Allyson *****

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    here are a couple of relevant 2001 articles on dysautomia which Shell has kindly hunted down for us.

    Thanks Shell !!!

    http://web.archive.org/web/20110716023555/http://www.fmpartnership.org/Lavin%20article.htm

    http://web.archive.org/web/20031018070156/http://www.ima.org.il/imaj/ar01oct-9.pdf

    Martinez-Lavin says this in his 2001 paper which is sad:

    "I am convinced that scientific evidence will eventually disprove FM non-believers. Both patients and heath care providers have to be daring and move away from the decrepit medical paradigm that views any illness without obvious structural damage as non-existent or as belonging to the realm of psychiatry."
     
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  14. Allyson

    Allyson *****

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    Another thought I hd on this topic overnight

    It is not an easy thing to diagnose - but then if it was easy we would have found it sooner
    In other words, the fact that it has been so hard to determine the cause of our illness means that the answer was never going to be and easy clear- cut one.

    Mish Mash might be able to say this better for me?
     
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  15. MishMash

    MishMash *****

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    I think i sawt that movie. Is it about the evils of the armanents trade? A guy lives in a cave in garbage pile? I have forgotten the rest of it. It was a very french movie. Full of double meanings, ironies, philosophical metaphors. Not many explosions or car chases. I didn't remember a person named mishmash. Wasn't there an asian lady named Ma Chow or something? it has been a while.
     
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  16. MishMash

    MishMash *****

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    Ally,
    I suspect it has been hard to find, because it is so simple. It is like the elephant sitting in the living room. Everybody is looking for esoteric explanations for OI/ POTS, like malfunctioning neural pathways, incorrect signalling, etc. I wish they would just check out the simple hypotheses first, then move on to the complicated ones. People seem very suspicious of ideas that are too simple. If it is a painful disease, the reason has to be very complex.
     
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  17. MishMash

    MishMash *****

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    I posted this before, but it got moved or something.

    But, speaking of diminished blood flow to the brain, what if Alzheimer's was as explainable as something as this. Interesting that at least some of this reduced blood flow is passed genetically from the mother. What if it were the common foundation for many neuro-immune diseases?

    Cereb Cortex. 2012 Dec 12. [Epub ahead of print]
    Cerebral Blood Flow is Diminished in Asymptomatic Middle-Aged Adults with Maternal History of Alzheimer's Disease.





    Another one:

    Vasc Health Risk Manag. 2012;8:599-611. doi: 10.2147/VHRM.S34874. Epub 2012 Oct 23.
    Cerebral blood flow in Alzheimer's disease.

     
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  18. Allyson

    Allyson *****

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    yes it was done in a light comic way though; I had forgotten the contortionist til i saw it the other night and she is CLASSIC EDS !

    i must find out if all contortionists have EDS.

    Mish mash is the lead female character.

    It's well worth another viewing IMHO; great movie form the guy who made Delicatessen I think.
     
  19. sandgroper

    sandgroper

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    Sushi,like you I developed ME later in life at 29. Looking back I can see I had POTS symptoms in my 20s. I had allergies all my life. So it seems like you said EDS predisposes one to ME as it does to POTS. The link to dysautonomia and EDS is there in the literature. It does seem that EDS sufferers are more prone to infections and that is the usual explanation i believe of ME. It could also be that infections are part of the ongoing illness for some. I have not thought that I had any ongoing infections due to not having swollen lymph glands and rarely sore throats. In fact apart from HSV I have not had many viral episodes, probably less than the normal population.

    Dr Hyde does not believe that swollen lymph glands are part of ME. i don't have flulike symptoms. I have read a lot about EDS sufferers who don't have ME and they do get fatigue but do not seem to get the crashes from minor activities like being in a car for a few minutes. Or from trying to do a calculation in their heads.

    Dr hyde does see a group of patients with Ehlers Danlos who have developed ME in their 30s. My suspicion is this is maybe a unique group (including me) that are currently either dx with ME and that there may be a group of patients who have EDS and something else that is currently called CFS. In other words, not everyone with EDS necessarily has the same illness, clearly some have a mast cell disorder, some have POTS, some have all 3, so it might be a bit like lupus where you get different presentations.

    there are patients in australia with EDS who are beoing diagnosed with Lyme and I believe Dr Shoemaker says they are prone to Mould toxicity.

    Sorry this is so rambly but i can only write when i am wired and now i am too exhausted to edit...
     
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  20. taniaaust1

    taniaaust1 Senior Member

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    Actually problems with temperature are also a symptom of mito disease and you will find if you start researching mito disease sites, it is often listed in the symptoms of mito disease.

    http://www.mitoaction.org/blog/dysautonomia-body-temperature

    and symptoms with mito disease.. often vary too and are not necessarily consistant. The symptoms can actually come and go in mito disease/dysfunction patients...

    I guess that all varies with what is going on in their lives at the time eg on a mito affecting drug? or any number of other factors which can impact on the mito at that point of time or moment

    Ive no idea thou about if photophobia is often found in mito patients or "hyperacousia" (whatever that is)..
     
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