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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

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    I think I remember reading somewhere that this didnt help you....but for me Florinef helps me quite a bit (thou as I said not enough, Im taking thou less then some as my specialist is cautious with it). Florinef helps boost blood volume. And my medical compression stockings certainly help some too. Keeping my legs up when Im sitting helps me a big deal (it helps stop me from having day after crashes, not getting enough blood to my head one day.. increases my chances of crash next day so I guess that must strain my body). Without my legs up.. I need then to spend far more time laying flat down during the days.

    All that and lots of water, large amounts of water if Im on my feet.
     
  2. taniaaust1

    taniaaust1

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    My days are very paced.. with precise amounts of time for doing physical activity etc (yoga to me is counted as physical as it does try to get my heart rate up). I keep my activity levels the same with careful monitoring and if I do more one day.. that goes into consideration for my next day (or I'll start crashing). My pacing is so careful tht I usually know percisely at what amount of doing something I will crash (often know within 10 mins of the amount of activity I can do for a day from the very start of the day) eg I know I can do 2hrs and 10-20mins of on feet activity per day all up at the most (and then have to rest next day). I know that 15 mins of tai chi will make me ill (it affects me more then vaccumming as its less moving around) etc etc

    The amount of times I walk to the loo is in accordance to how much Im drinking.. and how much Im drinking is exactly related to how much Im on my feet during a day. I know even before I start my day..how I'm going to be that day and how much I can do without consequences.

    So with such careful pacing.. its easy for me to tell what I crash from doing. Its not unusual for those who have this illness long term and have it currently stable, to know quite percisely what one can and cant do without causing symptoms.
     
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  3. taniaaust1

    taniaaust1

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    ukxmrv or anyone else.. can someone please tell me if his 2011 talk is very different to his 2006 Heart of the Matter Talk? (which I already have on DVD).
     
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  4. ukxmrv

    ukxmrv Senior Member

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    Hi Tania,

    I remember the "Heart of the matter" talk as that it is where he mentions his heart transplate.

    Most of my notes on his IiMe talk (and it was 2010 not 11 my mistake) was on the PFO finding. I had a quick look at a PDF of the talk in 2005/6 and I can't see a mention of that there. If the PDF by Carol S is the same as the talk on the DVD that you have I'd guess that there is some of the same information. terms and structure but more information now.

    Here is a snip from the UK MEA webpage about Dr Cheney's talk at the 2010 conference

    The main theme of Dr Cheney’s presentation was the work he has been doing on what he terms ‘the oxygen response deficit with exercise in CFS’ and the detailed investigation of cardiac (= heart) function in people with ME/CFS. Dr Cheney’s presentation contained a great deal of very complex information relating to investigations used to assess cardiac function and it should be noted that these very interesting findings have not yet been independently replicated and published in mainstream peer-reviewed medical journals. Consequently, the observations and conclusions about cardiac function in ME/CFS are not always accepted by international medical opinion.

    Among the key points and conclusions made by Dr Cheney were:

    People with ME/CFS seen at this clinic have a much higher incidence of diastolic dysfunction than controls. Diastolic dysfunction refers to the way in which the chambers of the heart develop a defect in the way they fill up with blood during the relaxation phase.
    Diastolic dysfunction is a factor in the development of symptoms related to orthostatic intolerance.
    A high incidence of the patients seen at this clinic have a patent foramen ovale (PFO).
    Relevant investigations include echocardiography and IVRT (isovolumetric relaxation time) responses to oxygen administration.
    CFS is an oxygen toxic state and oxygen toxicity status appears to determine outcome in therapeutic trials.
    Oxygen toxicity is not so much a cause of ME/CFS but a final common pathway that appears to determine outcome.
     
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  5. Valentijn

    Valentijn Activity Level: 3

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    A lot of good advice for patients with simple OI is extremely bad advice for ME patients. Being inactive is also bad, but being active is much worse for us. If I didn't elevate my feet all day prior to starting Strattera, I would have been completely non-functional all day, every day, for over a year. Same with raising the head of your bed - great for telling your body to adapt, and very bad if your body is not capable of adapting.
     
  6. Allyson

    Allyson *****

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    thanks tania, no i dont see m legs increase in size but they do feel swolloen afte I have been up for several hours; when your abdo gets bigger have you noted a ralationship to lactose intake ... ,my abdo swells after lactose or high fod maps foods due to the increased gas; let me know if you want to know how to test this easily with a lactose challenge if you didnt see it on the not crazy site;
    How do they measure for the low blood volumes?
    i am open to that as a suggestion but equally I see the possiblility of stretchy veins .. and i do have varicose veins and a few other sighns of EDS so am going with that.
    Any way i am starting on a vasoconstictor next week so shall see how that works.
     
  7. Allyson

    Allyson *****

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  8. Allyson

    Allyson *****

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    Yes
    Thanks Val,
    yes, i tried raising the bed and it did not help at all; now i need help to get the blocks out....i think it waqs after i dide that that i started elevating my feet even more to compensate.

    I am really keen to find and start one of those ME online diaries to start recording things. I think if enough of us do that we will start to see patterns emege in response to treatments etc.
     
  9. Allyson

    Allyson *****

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    Tania, I realised why not to elevate your feet; when you lie down your blood pressure is not low, that only happens ewhen we go upright.
    So lying down it is normal and if you raise your feet too much you get the signal to your kidneys that BP is high when it is not

    For the same reason my dos says not to wear the abdominal compression garments when you are lying donw, ony when upright.
    I find if i wear something clingy like lycra - not tight like spanx, note -around my abdo when I am upa na dabout my crash is less severe the next day
     
  10. Allyson

    Allyson *****

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    That said, Tania, I have to elevate my feet sometimes when they are too sore, bit I now try not to do it habitually .. only when i need to
    I still sleep with my feet up on one pilllow tho... so uncomfortable without
     
  11. Valentijn

    Valentijn Activity Level: 3

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    I don't think that makes much sense. BP is too low when we sit upright, so we put our feet up. It's normal when we lay down, when our feet are also naturally up.

    Forcing ourselves to sit with our feet down doesn't make anything better in the long term, and make symptoms much worse in the short term. Sitting with our feet up at least allows us to function.
     
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  12. Allyson

    Allyson *****

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    No I dont mean not to sit with your feet up Val. I mean when you are lying down; apparently if you elevate your feet then over the rest of your body it makes thinks worse as it signals high blood pressure to your kidneys which then lower your BP for you.
    I totally think it is better to sit with your feet up than down if you are sitting in a chair.
     
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  13. Sherrie

    Sherrie

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    Allyson, I haven't read through all of the thread, oddly enough I had to lie down on the lounge after forcing myself through page 2 and I have just read page 3 but I don't have the stamina to stay at the computer for much longer.

    One of my first symptoms before being diagnosed was spider veins appearing up my legs. I can also touch my nose with my tongue.

    On lying down, this I find hard because I cannot lie down supine at all due to pain in my hips and lower back which was apparently caused by too much hormone loosening my ligaments too much when I was pregnant (2004) which led me to injuring myself whilst weeding when I was only 6 weeks pregnant. This did disappear after birth but came back after I relapsed a few years ago. I now have to sleep in an adjustable bed but I can't stay in that for too long so it prevents me from lying down too much. I also find it very difficult to hold a book or use a laptop lying down so I don't like to be in bed.

    I sit a lot at me desk but I sit back in the chair and rest my legs on the desk.

    I found your comment about being awake in the wee hours interesting as I am more likely to be more alert if I wake up in the wee hours but after doing it for a few nights the lack of sleep gets too much. I rarely get a proper nights sleep (I go to the toilet ever hour or two) and when I do sleep through, I usually feel much worse, like it wears me out.

    On the topic of collagen etc I was researching lysine for cold sores once which led me to reading about the effects of proline and lysine (Iherb sell a combined supp) which is meant to address it, anyway I just wanted to reply which a quick article on it that I just googled for you: http://www.livestrong.com/article/412108-ascorbic-acid-lysine-proline/ http://www.nutritionreview.org/library/collagen.connection.php

    The articles I read originally were much better but I can't find them.
     
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  14. Allyson

    Allyson *****

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    thanks so much for this Sherrie; I am just off to the docs but will read it later. Much appreciated. I take lysine for cold sores and wondereed why it was never in anyof our suggested treatments as it seems relevant to us.
     
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  15. Allyson

    Allyson *****

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    Sherrie about going to the loo 2 hourly overnight: if you try and drink your electroyltes - or other fluids - mostly in the morning or by 3am that might help( due to aldosterone or other hormone changes or something at that hour). Also if you can try and train your bladder in the day time - ie hold on when you feel you need to go and wait til you are nearly busting ... that helped me; also i find it helpful to keep a po by the beddside.... as walking to the loo will likely trigger an adrenaline surge ( due to being upright and lack of blood to the brain) so you are more likely to get back to sleep if you dont stand for too long. Also vitamin b 12 injections IM really improved the depth and length of my sleep - possilby because it is a blood volume expander - like clonazepam which i take in only minute quantities - like the tiniest bit you can break - when I need it and find that works as well as a quarter tab does.
     
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  16. Allyson

    Allyson *****

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    Hey Val i think we are aying the same thing; I mean elevating your feet above head level whey lying in bed is not a good thing though it feels good as that does then signal high blood pressure and tell your body gto lower it.
    but as for keeping feet elevated when sitting or lying rather than standing as much as possible I think that helps us. And my point it is is the feet elevation when sitting - or avoiding standing - that stops us crashing.
    Cheers
     
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  17. Allyson

    Allyson *****

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    Thanks, yes but my point is Tania, if you observe how much time you spend upright - rather that in activity - would that make your calculation more precise.
    And if you factor in the heat as well.... my symptoms much worse in the heat.
    If this theory is correct standing up will make you sicker than an activity done lying down

    I am not sure yet how PEM fits in - i get that very badly too but i do not need to exercise to cause a crash. I suspect something to do with lack of blood supply to muscles and adrenalin being released constantly and lack of blood to brain.
    the heat and hot food make all my symptoms worse and that is a big argument in favour of this stretchy vein theory; I would love feed back from anyone on this please.

    nothing else explains why heat consisitently and precdictably makes things worse, and this theory does; it also explains why alco=hol tolerance is low in us and airplanes - extrea vasodilatation.
    eg i recently discovered Pho as a tasty way ot get in electroylytes

    but realised i felt bad after it... why ? they serve it so hot. Now I order it to go and serve it tepid at home and do not feel bad after it. All that heat in your abdo near the major abdominal blood vessels must be causing vasodilation. Plus te Pho restaurants tend to be hot and steamy.
     
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  18. Allyson

    Allyson *****

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    And another thing I have noticed that is also consitent with this thory is that i feel worse after meals; if i lie down after meals does that lessen crash time? I think so ; would love feedback form othersw on this

    I feel this is possibly on of the the most important things I hve learnid in managing the condition... ie the stretchy vien theory wo would loveto hear if it resonates with others too please.
     
  19. Allyson

    Allyson *****

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    Hi Sherrie, thanks for the articles ; the on en on lysine and arterial damage is particulalary intersting.
    I always lie dow n touse the laptop in bed for preference; that way i can stay on it longer... have you tried that?
    you see, being unable to stay upright even for PC use may well be indicative.
    I have that too. and it causes a crash ...but does not if i use it lying down .Any time spentsitting up or standing tires me but lying down activity does not ... vigorous exercise ecluded; I have not tested that yet ( ie staying lying down and cool all day but doing some exercise like weights or pilates and seeing if that causes a crash on its own.
     
  20. Allyson

    Allyson *****

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    Sherrie on e thing i just noticed about using the laptop in bed; if you rest it directly on your abdo iit is very hot so tat is probly not good for us. Form now on i will atke dare to rest it on a pillow so I don t get the heat to my abdo causing vasodialtion. Ditto for my flat bottomed teacup ! every little but helps.
     
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