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can you touch your nose with your tongue?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Allyson, Mar 12, 2013.

  1. RosieBee

    RosieBee

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    Raymond Perrin (osteopath who created the 'Perrin Technique' for ME/CFS) uses the presence of stretch marks as part of his diagnosis of ME - he is in talks with the NHS as we speak working on using his diagnostic approach to identifying the disorder.

    Rough knees and blotchy patches - sounds familiar to me too.
    Shell likes this.
  2. RosieBee

    RosieBee

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    Thanks for the link Allyson - lots to read there! Is this something that my GP could help with, that I should push to get diagnosed? They already are quite hostile at my local GP surgery, so I only approach them with caution if I know exactly what I want from them.
  3. beaverfury

    beaverfury beaverfury

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    I used to amuse other kids with just such a feat as a child.

    I can also carry a pencil between my top lip and nose.

    I am available for parties
    VeganMonkey, Allyson and RosieBee like this.
  4. beaverfury

    beaverfury beaverfury

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    ...As long as they end before 7.30pm...and there's no red cordial
    Allyson likes this.
  5. Allyson

    Allyson Senior Member

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    yes we used to fine it funny when my grandfather did it - and my mother used to show it off.


    It is interesting how many peole on this site can identify it as it is a sign of a connective tissue disoreders and a marker for EDS. So you might want to look for other symptoms Beaver; this lin is a good start

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/
  6. Allyson

    Allyson Senior Member

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    Hi Rosie
    you may try approaching them for an EDS referral and find they are less hostile -- most doctors I have met so far find EDS genuine and interesting ( and I have seen the same doctor totally reverse her attitude and become hostile when I then mentioned ME/cfs....those propoganda clips must circulate in medical circles.)

    Failing that I would look for another GP.
    I think the more of us get diagnosed with EDS if that is wht we have the better chance we have of research and treatment.

    i would read up on it first so you know your symptom list - which it might be a good idea to write down as a list.

    There are lots of links on this main thread to start you off::

    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/

    then i would look around for a geneticist - that is what I am doing next.
    RosieBee likes this.
  7. Allyson

    Allyson Senior Member

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    I see you are in Aus Beaver so I would start searching large publc hospitals for genentics depts and get a referral there if you have other symptoms as well - which I assume you doa s you are on this site.
    Tht is the key to getting counted and research happening as up to know many docs think it is raare and so the diagnosis gets missed.
  8. VeganMonkey

    VeganMonkey Senior Member

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    I was diagnosed with hypermobilily long time ago but waved if off as nonsense (being hypermobile was very handy for me as a dancer, so I didn't see how to could be bad) But I have recently been diagnosed with POTS and my sports therapist (he is specialised in CFS) suggested to check for EDS as I score all the mobility points.

    So it might be the mobility type. I don't have all the symptoms but I do have a skin that easily bruises and breaks, I often accidentally scratch my skin open iI have some old surgery scars from my childhood that are very strange: as if they have popped the skin open and there is the thinnest skin that feels as if there is nothing underneath, pretty freaky! But recent surgery scars healed up normal (better stitching I think)
    I also have fragile a cornea (need a transplant soon) in my right eye due to astigmatism, but don't know if that is an EDS thing.

    My parents are both hypermobile too but my father isn't negatively affected at all. My mother has had problems with energy levels all her life but can function very well. We think she got a light form of CFS. Her father had problems with energy as well, but again, he was able to lead a normal life. He wasn't hypermobile though. My grandmother was, but she had loads of energy and was healthy.

    My cousin (from my mothers side) can touch his nose with his tongue. Something definitely runs in our family! The rest of the people still alive today are not affected at all though or only little bit.

    Question for everybody:
    When did you first start to notice symptoms (EDS, ME/CFS or other)?
    Allyson likes this.
  9. Allyson

    Allyson Senior Member

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    Hi Vegan and thanks - so interesting; the scarring apparently tends to be worse on the knees and calves for some reason - as in my case - those on the rest of my body are more like normal.
    Yes I have read that corneal involvement is not uncommon- sorry i don t recall where I read it. Many of the other symptoms are the same as those for ME- energy issues, crashes, OI/ POts Gut issues, alergies etc etc.

    COuld i ask would you mnd posting this post too on the main EDS thread for people who are coming in there from other sites.?
    It is amazing how many peopole are - like me - discovering this does in fact apply to them. ANd the main thread has now had over 12,000 views so there is widespread interest in these doctors' theory which is good news. Here is the thread link ( also there are more article links there you will know.
    http://forums.phoenixrising.me/index.php?threads/is-me-due-to-ehlers-danlos-syndrome-stretchy-veins.20351/
    ps some other things to look for in you and family history are hernias, hemorroids, varicose veins, asthma, excema allergies, hay fever, IBS.....and I think Marfanoind habitus which is connected - my grandfather and brother have that. Here hoping genetic testing pics up for us,
  10. Shell

    Shell Senior Member

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    I can do the pencil between nose and top lip trick too. LOL.

    But in other ways I;m as stiff as old plastic. My jaw locks if I try to open my mouth wide and I can't stick my tongue out at all. (I remember the horrified look on the face of the anethetist when I was rushed into theatre for an emergency C-section) I am sure it's that which meant an anethetist had to get help to intubate me once because he couldn't get the tube in.
    I don't have a bendy body, though my fingers are kinda loose and weird at times.
    Don't these signs mitigate against EDS or can you be stiff jointed but have EDS IV or one of the others that don't come with hypermobility?

    Also - is it worth taking collegan suppliments?
    Allyson likes this.
  11. NPDivi

    NPDivi

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    Here is another fun feature of EDS, piezogenic pedal papules. Medscape defines them as, "painful or asymptomatic papules of the feet and wrists that result from herniation of fat through the dermis. They are common, nonhereditary, and usually are not the result of an inherent connective tissue defect." They appear when one is standing. Has anyone noticed this? [​IMG]
    Allyson likes this.
  12. Allyson

    Allyson Senior Member

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    Hi Shell I am very stiff too and it seems there are two groups who seem to be replying - hypermolibles and then people like us - what to call us?.... no in between; I have read of a musculocontractual type of EDS .
    Muscle fascia is connective tissue too - I ahve always been in felxible and had tight muscles - notwithstanding this my speialist has diagnosed EDS 3.

    IT can manifest differently in everyone - even those in the same family. That is why many dislike the term Hypermobile Syndrome - HMS - as it excludes those who have all the other symptoms but no joint laxity. I have migratory joint pains without erythema (REDNESS), bilateral TMJs an RSIs.

    There are also degrees of hypermobility - some can bend backwards etc, others might only have a flexible thumb.
  13. Allyson

    Allyson Senior Member

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  14. Allyson

    Allyson Senior Member

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    I can do that too Shell- is it unusual? totally natural for me .....Is it connected to EDS?

    I don' t think you can take collagen supps Shell ( not sure they exist ) but you could try the thinks that they say do help skin by helping you build collagen
    oily fish in diet, fresh red capsicum, avocado, imedeen tabs , lycopene( that's expensive) ? vitamin A
    and i wondered about hair skin nails formulas - thsy DO imporve my fingernail strength when i take them
    horse chestnut toois supposed to strenthen hair.... these are all anecdotal but my skin did seem to improve on these and flax seed oil..... I would try anything harmless!


    and also IM b 12 is supposed to help in protein synthesis- somehow it improves my sleep quality - no other enefits noted so far after several months of weekly injections
  15. VeganMonkey

    VeganMonkey Senior Member

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    Feel free to do so, always handy to have everything collected in one thread :)
    Allyson likes this.
  16. VeganMonkey

    VeganMonkey Senior Member

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    Another thing that I have and that is really annoying is that when I sit down for a long time (especially when I sit and bend over to do something on the floor like gardening, which I do sitting down to conserve energy) is that my hip joints start to feel 'dislocated'. Not that they are but it's really uncomfortable. Same when I sleep with my elbows inside out, that happens accidentally and it starts to hurt very soon, same for shoulders. So whenever I am aware, I make sure all my limbs are in positions they can not start hurting, but during sleep I don't notice of course.

    Btw that putting a pencil between nose and upper lip, I think everybody can do that. I remember kids at school doing that.
    Allyson likes this.
  17. Allyson

    Allyson Senior Member

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    that sounds like the symptoms i read a lot on the EDS page Vegan
  18. VeganMonkey

    VeganMonkey Senior Member

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    I was afraid so :(
    Allyson likes this.
  19. Allyson

    Allyson Senior Member

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    Hes Vegann, sad news but at least it may end the mystery for you and lead to a positive diagnosie - and with and illness that is treated with respect and interest by the medical profession even if research is still in prelimiary stages and under- diagnosis is the norm.
  20. VeganMonkey

    VeganMonkey Senior Member

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    If I get diagnosed for EDS I certainly want to be part of a research program. My specialist hasn't contacted me yet about the EDS specialist, I'll wait a few days, if not I will call him :)
    Allyson likes this.

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