Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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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. MishMash

    MishMash *****

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    Have you ever been sitting at the table, having lunch or dinner with a friend. And you hear a constant cracking and popping every time he/she opens her mouth. All you can think is: "for the love of God, will you please stop making that noise!" How many folks with diagnosed ME/CFS have some form of TMJ or jaw irritation issue? I'm betting, again, it is another connective tissue weakness. It is pretty common among our group.

    Oral Surg Oral Med Oral Pathol. 1991 Nov;72(5):514-9.
    Temporomandibular joint dysfunction syndrome: a close association with systemic joint laxity (the hypermobile joint syndrome)

    Buckingham RB, Braun T, Harinstein DA, Oral K, Bauman D, Bartynski W, Killian PJ, Bidula LP.
    Source

    Western Pennsylvania Hospital.

    Abstract

     
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  2. Allyson

    Allyson *****

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    Thanks, Sherrie,

    that is almost the defining feature of EDS type 3 - Gorlin's sign positive - ie being able to touch your nose with your tongue. !!!

    Not sure if it means 100 per cent you have it but it was the very first thing the prof asked me and the fact that my mother can do it was seen as very important in the diagnosis.

    Until we have genetic testing these small signs are all we can go on.

    As someone pointed out to me in a PM, so many people here are saying .. It doesn't apply to me .....BUT I am bendy or have stretchy soft skin or I can touch my nose to tongue etc....

    Maybe it does apply to a lot of us at least and the more of us that recognise it and give it some serious thought ....the sooner we will get a push for a genetic test, recognition and treatment.
    Please can I ask people to consider it it DOES maybe apply to them.. as it explains so many things about our illness that nothing else does.

    Thanks again so much, Sherrie and everyone, for the valuable feedback....please keep 'em coming guys!
     
  3. Allyson

    Allyson *****

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    thanks Mish mash.

    Yes I have a bad bilateral TMJ though my jaw does not make any noise
    It is just very painful ... especially if I have been talking for any length of time
     
  4. Allyson

    Allyson *****

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    Thanks Ahimsa,

    yes I am astounded by the amount of heat form the laptop,
    Even on a thick foam cushion I can feel the heat on my body after a time and that heat toyou abdomeem is likely really bad for expanding the veins even more.

    Another thing I do when I notice I am starting to heat up is drink a big glass of cold water... kills two birds I hope and cools you back down quickly ...and from the inside where it seems to count
     
  5. Allyson

    Allyson *****

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    [quote

    Oral Surg Oral Med Oral Pathol. 1991 Nov;72(5):514-9.
    Temporomandibular joint dysfunction syndrome: a close association with systemic joint laxity (the hypermobile joint syndrome)

    [/quote]

    And yes Mishmash, TMJ is up there on most list of symptoms for ME. ...until now it was a mystery as to why....mystery solved.

    Thanks indeed. Wonderful.
    Ally
     
  6. Allyson

    Allyson *****

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    And I wonder, Sherrie, did that health kick involve giving up coffee and switching to water as a main drink , perhaps? thus removing a stimulant that may have bene masking symptoms?

    Cheers,
    Ally
     
  7. Allyson

    Allyson *****

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    I forgot to add ;"Social phobias" is another symtom of EDS

    In my case I have always disliked going to parties and never known why

    Now I know why: they usually involve standing for a long time in a crowded, hot space with lots of people and lots of adrenaline.. plus alcohol... the great vasodilator.
    And all that talking is hard on the jaw muscles ( thanks Mish Mash).

    Throw in hyperacousia and photophobia from the adrenalin (which is being punped out to keep the blood going to your brain and heart while you stand) and it is not my idea of a good time.

    I know "mall syndrome is listed as a common ME symptom.. and shopping centres have a lot of the same issues ....plus bright lights.

    Any one else noticed this kind of issue?
     
    merylg likes this.
  8. Sherrie

    Sherrie

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    No I didn't give up coffee, I did drink 1-2 cups plus decaff but I did give up my1-2 ltr coke (cola) habit. However I did switch fully to decaff during my pregnancy and continued caffeine free until after I relapsed. It wasn't until after trying the supplement regime by Dr Sarah Myhill that I introduced coffee back, she recommends coffee to help recycle ATP. I was also a smoker until maybe 1-2 years before the health kick when I gave up.
     
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  9. Sherrie

    Sherrie

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    Yes, I put it down to having trouble processing all the information that's going on around us, various noises, movements etc
     
  10. Allyson

    Allyson *****

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    Yes hey thanks Sherrie, interesting; and there is now another - concrete and physical - explanation for it
    ie lack of blood supply to the brain (and heart and peripheries) makes it hard to process anything ... we go into emergency survival mode.
     
  11. Allyson

    Allyson *****

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    Hey Sherrie, thanks.

    Yes the C ( unnameable brand of COLA) word is another stimulant , just like coffee you will know it contains lots of caffeine...and a sugar hit to boost.

    So that could expalin why your symptoms came on then when you stopped it.... they had been masked previously by an all-day-long caffeine intake....exactly as was the case with me.

    In fact I started to notice after that that anytime I felt a bit of enegy and did something like garden or clean I would look back and realise that just before that I had had strong tea or coffee or dark chocolate.

    And the energy would last for a while then just stop .... as the caffeine wore off.
     
  12. Allyson

    Allyson *****

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    Hi Justy,

    I am still looking out for the symptom list for EDS. But I do know the wikki page is woefully inadequate now in light of recent research and is not to be trusted really.
    If it is the connective tissue in the entire body that is affective it seems really a logical explanation to me.. that is going to affect all systems; and when the blood supply to the entire body is compromised on top of that ( as the collagen in the blood vessels is ineffective) I really think this is the best match for something that will explain the complex and multifacted nature of our symptoms. Throw in adrenalin surges on to of that and it is a recipe for the disater we call home!
     
  13. Sherrie

    Sherrie

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    My spect scan in the Kwiatek study that's not published yet showed reduced blood flow in the brain.
     
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  14. Sherrie

    Sherrie

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    I don't feel like they give me energy, sometimes my 85% choc and coffee which I have every morning makes me dizzy.

    After I had my daughter my symptoms had gone for 3 years before they started slowly coming back and I was caffeine free that entire time.
     
  15. Allyson

    Allyson *****

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    Hey Sherrie, and yet they are know stimulants.
    Last night I saw a program on skin. The collagen in skin decreasee in quality as we age... for everyone. This could be reason why our symptoms do not show so much when we are younger.... as we age the collagen in our blood vessels deteriorates and so symptoms worsen. Throw in some assaults on it like air travel depressuraisation and think that we could be also masking early symptoms with caffeine use and I htink it is a pretty coherent argument.
     
  16. John Whiting

    John Whiting

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    Just a curiosity worth a mention: teenage girl with ME: then got EBV hepatitis; post-EBV: had marked varicose veins in one leg i.e. Acute Unilateral Varocose Veins Post EBV - Dr John L Whiting
     
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  17. Allyson

    Allyson *****

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    Hi Thanks for that John; interesting. It is amazing how many people are relaizing they have some signs of connective tissue disorder... hope this may be the answer wea are looking for.
     
  18. Allyson

    Allyson *****

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    Btw John, yes my varicose veins are only in my left leg.

    But I have spider viens in both and easy bruising and petechiai

    do not know if varicose veins are usually bilateral... does anyone?
    Thanks
     
  19. AFCFS

    AFCFS Senior Member

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    I have had this; it first manifested as ear pain and thought I had an ear infection. I think mine may have been caused by getting used to an oral appliance for sleep apnea, which draws the jaw forward.There are a bunch of videos on YouTube to help out with this. I found the fist one informative an the second one, though not a high video quality, very helpful.



     
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  20. Sea

    Sea Senior Member

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    Hi Sherrie, I'll be travelling to Adelaide to be a part of this study in Feb 2013. How did you get your results? I thought dr Kwiatek said that we wouldn't get individual results. Very pleased if I can
     
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