The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.


Discussion in 'Gastrointestinal and Urinary' started by Flashster, Sep 22, 2011.

  1. Flashster


    Hi All,

    Thanks for you posts. Talking about it does help as I find I'm on my own with this quite severe issue a lot of the time.

    I don't think EDS type III (hypermobility type) has any genetic markers - at least that is what the professor told me.

    However, he did mention that there is a link to M.E.. I also suspect that a subset of ME'ers have mild EDS (like me).

    The swallowing issues you describe (things getting stuck half way down) is exactly like me. I had this for years with m.e. (as many do), but 2 years ago things started happening in the upper throat area too (felt like it was hard to get solids past the adams apple area). This is what pushed me to get them to investigate more, as I felt it was something different to M.E..

    I described the upper throat swallowing problems to the docs, but didn't mention to them about the lower down issues. The manometry test showed I have issues lower down, which I'd forgotten about because the upper throat issues seemed much more urgent.

    EDS apparently causes saggy organs - including, as they are now finding, the oesophagus, and the bowels. I have a rather uneducated theory that some of our food intolerances are due to food not being pushed through the gut fast enough. This, coincidentally perhaps, is what seems to happen with this type of EDS.

    I hasten to add that swallowing problems do come and go with ME and in the last 2 years I have had consistent unable to swallow solids symptom, so there is a difference in level of symptoms.

    However, one thing I have learned: Don't stop pursuing the cause of your symptoms if you feel its not M.E. . My GP to this very day doesn't seem believe anything I say regarding my swallowing and says they will never see anything in any of the tests.(which they did of course, but I had to go via other routes to get seen).

    It can often be hard to distinguish whether it is an M.E. symptom - but this was/is unrelenting and hasn't gone away at all.

  2. Flashster


    In the last few days I've now began aspirating on any fluids I live on and even my own phlegm.
    I'm in a dire state swallowing wise.

    I've been tested for everything under the sun including motor nuerone and MS, but have yet to find anyone outside of those worlds with swallowing symptoms so dire. They think its Elher Danlos, but I can't find anyone with symptoms like this.

    Having to keep "aheming" for ages after even the smallest swallowing is exhausting.

    I can't keep on like this for long.
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I am sorry Flashter. I have swallowing issues too, in part due to dry inflammed throat at least, but not nearly as severe as yours. I wish there were some nifty advice I can give, but I don't have any at the moment.
  4. leela

    leela Slow But Hopeful

    Couchland, USA
    Flashster, I imagine you must be losing weight as well. Sending you love and calories!
    Since the mainstream medicine folks are coming up empty with solutions for you, I thought I'd attach
    a few articles about acupuncture, which I have often found offers relief where other modalities do not. Of course there'd have to be a good practitioner in your area. In my last town, I had a really skilled one, who was also very compassionate and offered me a very sliding scale on the fee.

    Acupuncture Improves Swallowing Difficulties after a Stroke

    Acupuncture Helps Swallowing_New Research

    in a pinch:
    Self-Acupressure video:

  5. camas

    camas Senior Member

    Hi Flashter,

    I'm so sorry to hear of your terrible struggles with swallowing. This is a long-shot, but here's another condition that can cause difficulty swallowing.

    It looks like they treat it with steroid inhalers sprayed into the mouth (without breathing) and then dry swallowing the steroid to reduce inflammation before eating.
  6. Anna Wood

    Anna Wood wood/sheridan

    Hello - sorry for the really slow response! A few days after posting I started having trouble swallowing solids too, and then it turned out a few days later that I had a virus/throat infection (combined with ME silliness). I was really poorly for quite a few weeks - honestly I've never felt so ill before for so long (and after 15 years of ME that is saying something!). I really struggled with eating and the drinking got much worse -somehow the back of my throat got really sensitive and I paniked when anything particularly liquids touched. Even fruit was a problem - and it took so long to eat I basically had to spend all day trying to swallow tiny amounts of food. Even then I lost weight - it went down to below 6 1/2 stone (90 pounds). Anyway, eventually I started to pick up, and eating got easier, and I was just left with anxiety about swallowing liquids. That is nearly back to normal - I still find it hard at times, but I'm getting there. Thanks everyone! It was very frightening at the time, and good to know there were people I could ask for advice.

See more popular forum discussions.

Share This Page