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ME, EDS, fibro BREATHING/SLEEP PROBLEMS, PAIN, NARROW NOSTRILS, JAW ETC

Discussion in 'General Symptoms' started by EnduringAngel, Jun 22, 2013.

  1. EnduringAngel

    EnduringAngel

    Messages:
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    "Hampshire, UK"
    Hello peeps.
    I was wondering if you could help me, apologies in advance if this doesn't make much sense, my brain isn't working great today.

    I have had breathing problems since I was a kid, but even after I had my tonsil and adenoids out, I still remained a mouth breather.
    Since getting sick around a decade ago my sleep and breathing have gotten worse.I know I also hyperventilate, and Dr Myhill told me this can cause magnesium deficiency, but no matter how much I try I can't breathe properly through my nose. I hear it can also worsen candida which I also have bad.

    I had a sleep study done around 5 years ago, apart from DSPS it showed nothing, no sleep apnea, and recently the POTS team london UK, gave me a thing to stick on finger for a week, that showed my oxygen at night is fine.

    But I can sleep around 16 a day, I often wake up out of breath and feeling oxygen deprived.

    And then I came across this article by jacob t about a condition called UARS. and suddenly it all made sence. But although the nosovent help a bit, but it's not enough.http://www.endfatigue.com/articles/Article_uars.html
    The sleep clinic I went to was not good, and would not listen to me when I asked them about it.
    So my first questions are has anyone is the UK been diagnosed with this? and does anyone know of any UK sleep clinics that have heard of it or can test for it?

    Next is the problem with my breathing in the day, which may be connected. I was punched when I was 13 and wonder if this has affected my nose.
    However it's bad both sides, and I did a test I saw online and know that I have nasal collapse.
    Again, the nosovent helps a bit with this, but not enough.
    I am wondering if it could be connected to the EDS3 that I was recently diagnosed with.
    People with EDS often have high arch palette in the mouth, and if our connective tissue is affected then maybe this affects our facial structure or nasal passage?
    So my 2nd questions are has anyone on here with EDS had similar problems? are nasal problems common in EDS? and does anyone know of any ENTs in the UK?

    I managed to do a bit of research on this, but not a lot, as am so poorly :(
    but I did find some interesting stuff out.
    Firstly I discovered that there is a link between jaw probs and pain probs such a fibromyalgia.
    TMJ is common in fibro, so my dentist diagnosed me and made me a gum shield, which surprisingly helped lower my pain levels. Looking into andrew holmans theory of fibro and spinal cord compression, I realise I must have gotten fibro after my car crash, whip lash incident.
    It also made sense of why some drs in america are now treating pain using mouth guards. http://drugfreepainhelp.com/#osb-mechanics

    so if you have fibro, or general pain, def get checked out for TMJ as the gum shield could help reduce pain.

    The second thing I found was through my osteopath who used to have CFS, and felt like his jaw was dropping and his face shape was changing.
    He did heaps of research and found a device called an ALF appliance. Advanced Lightwire Functionals

    He said people who had it reported that the arches in their feet came back, which I thought was interesting given that people with EDS have flat feet.
    Also people with EDS often have dental overcrowding and have teeth pulled, which I did, which may be a bad thing, and cause the jaw to narrow.
    He said that within weeks of having his, his breathing and concentration improved.
    What do you think? am I onto something? has anyone on here heard of ALF of have one?

    Angel x










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