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Lessons from ME/CFS: Finding Meaning in the Suffering
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Swallowing

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

  1. Flashster

    Flashster

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    Hi All...first post....

    Had ME for aroun 10 years. Started with food getting stuck in chest, then food intolerances, weakness etc. So I'm no newbie!

    However I currently am having great issues with swallowing (had temporary ones but this times its not gone away, in fact worsened, in months). This time its in the throat area.

    It started when the GP noticed I was low in vitamin D. I started to take 1000IU vit d tablets and within a couple of weeks, noticed the tablets were getting stuck in the gullet. Stopped taking them. But throat issues got worse. Food started getting stuck near voice box/adams apple. I felt it more 'lumpy/stickty/phlegmy' on the one side than the other.
    This 'non symmetrical' symptom led me to a ENT who has put a camera up/down my nose and saw no lumps, but noted dry areas and phlegm, which he suggested the swallowing mechanism wasn't working correctly.

    That was in April. I'm now down to liquids/soups/chocolate. I'm due for a barium swallow. My GP feels this is ME at play, but its really got me worried as even lumpy soup/rice pudding makes me choke. In the last week or so my throat muscles click horribly when I swallow. I'm losing a lot of weight again, which worries me too.

    Has anyone else experienced this? (one side of me hopes someone has, but there again I hope you haven't!)
  2. Flashster

    Flashster

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    I thought the GP said I had that (it was apparently a misunderstanding), and I spent the next 4 days in a real state. My anxiety levels shot through the roof and I ended up in ER.
    The GP then said he never said I had it and that I certainly do not. But is it possible? I don't have any problems with my tongue, or twitching.
  3. Flashster

    Flashster

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    I've just read that speech issues occur in 93% of people with bulbar als. I've not got any speech issues at all.
  4. Flashster

    Flashster

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    I am trying to find someone to see about it here in the UK as I type. But there doesn't seem to be anyone listed!
    You have me quite worried.
  5. Wayne

    Wayne Senior Member

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    Hi Flashster,

    Welcome to the forum. I had some swallowing problems a few years ago that seemed to be getting progressively worse; I was also quite worried about it.

    I ended up having an asymptomatic root-canaled tooth extracted, and the swallowing difficulties cleared up about 70%-80% almost immediately. They still "lingered" for a few months longer, but I do not have any problems at all these days.

    Also, Lyme Disease bacteria is known to be able to attack the cranial nerves. Some people get Bell's Palsey; others experience swallowing problems. I think it's the trigeminal nerve involved in swallowing. Anyway, wanted to toss out a couple of other possibilities, both of which might be treatable.

    Best, Wayne
  6. Flashster

    Flashster

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    Its ok. I'm of a high anxiety state anyway. When the doc brought up 'MND' in conversation it caused me so much worry I stopped drinking fluids, which made everythimg worse. He then said I hadn't got it he was just chatting about what neurologists do. My mistake. When you then mentioned it I went into panic mode again.

    Today I've noticed that my throat is sore again. I'm getting back to thinking this is my particular version of M.E. at work again, but we'll see. I've been referred to a neurologist that 'specialises' in M.E. and have a barium swallow with the ENT people next week. I know, second hand, that there are people out there with great difficulties swallowing with ME, but never seem to find any!
  7. leela

    leela Slow But Hopeful

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    Welcome, Flashster. Sorry you have been having this trouble, and the attendant anxiety.
    It definitely helps to remain as calm as possible, and just notice the worry, let it be there, but don't hold onto it for dear life :eek:
    This is likely just another weird manifestation of ME system confusion, but if you are to the point of liquid-only diet, I would say you are correct to pursue treatment.

    I have also in the last six months or so developed the swallowing difficulties you describe, though I can still eat solid food.
    (FWIW it is accompanied by a tendency to aspirate beverages, and sometimes my own spittle.)
    I find tablets and pills get stuck in pockety-feeling place in my throat, and things like toast, even when piled with non-dry elements like avocado & coconut oil, tend to do the same. I have not sought treatment since my symptoms are less drastic than yours and not as constant.

    A friend suggested a minor malfunction of the epiglottis, (which apparently starts to do this kind of thing with age anyway.)
    Both the glossopharyngeal nerve and the vagus nerve have attachments to the epiglottis, and we do have a CNS disorder after all...The vagus nerve in particular is implicated in several different symptom patterns in ME.

    Another friend with ankylosing spondylitis has this problem too--so I have to wonder if it is a common thing in autoimmune diseases due to inflammation of just about any available tissue? Also, your doctor's find of dry and mucousy patches in the throat make sense, since dryness in general has also become one of my symptoms. Have you noticed dry mouth, eyes, skin, dry cough as well? If so, it might be worth reading about sicca syndrome or sjogren's.

    Hope something in there is helpful and eases your mind a little.
  8. xrayspex

    xrayspex Senior Member

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    u.s.a.
    I have issues with swallowing that come and go, when I try neurotin, even in small dose, it gets worse. if you take any antiseizure or stuff that would
    slow down some bodily functions it could happen.

    mine also seems to be related to reflux, make sure u dont have barretts esophagus and I just found out have sjogrens, stay hydrated, helps the throat.
  9. rendere

    rendere Ren

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    rendere

    I've had problems swallowing the past couple of years but not as significant as yours, Flashster. I have difficulty getting pills down so take lots of water with fewer pills. Also choke more in general but still eating just about everything. Make a conscious effort to chew every mouthful very well. Thought this problem was due to low thyroid but it wasn't.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Welcome to the forum, sounds like a horrible "symptom" or whatever is would be called. I have chronice pharngitis and have been through the testing you have referred to.

    Hope you find some relief soon!

    GG
  11. Boule de feu

    Boule de feu Senior Member

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    I also have chronic pharyngitis with severe nausea.
    Some days I can't swallow my pills. Like you said, they get
    stuck in the middle of my throat.
    I got scared at one point because I choked on some chicken I had eaten.
    That day, I choked twice and realized I had to be more careful.
    I was by myself and it could have been disastrous.
    It does happen now and then. Not always.

    What you are going through is very stressful.
    Don't forget to take a deep breath....
  12. Francelle

    Francelle Senior Member

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    Sounds like you need to have an Oesophageal Manometry test done. This will test for oesophageal paralysis or dysmotility. One of my earliest symptoms was difficulty swallowing and a feeling that food/tablets were getting stuck. An extension of this is Gastroparesis (paralysis of stomach) which I also have.

    Many M.E. people complain of gut dysmotility so it is really an extension of GI tract paralysis/dysmotility.
  13. Gamboa

    Gamboa Senior Member

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    Perhaps you have Chiari Malformation. There is another thread on-going at the moment about this. There is a video mentioned in this thread on Youtube that is quite astounding. In it the neurologist says that Chiari is under-diagnosed and that it is thought to now affect 1/100 people, as opposed to being rare as once thought.

    Also check out this site: http://chiarione.org/symptoms.html

    Apparently difficulty swallowing is one of the symptoms of Chiari as well as many symptoms that overlap with ME/CFS.

    It also says : Perhaps the most common misdiagnosis is that of Chronic Fatigue Syndrome. The nature of CMI is to present symptoms for which no cause can be found. For most doctors, CMI is a very puzzling condition. Headache, sore throat, and fatigue are just a few of the symptoms found in both conditions. Most CMI sufferers report having been previously diagnosed with CFS or some other variation of this disease (CFIDS, Fibromyalgia).



    You might have this, which would actually be a good thing since there are things they can do to treat it.
  14. Gamboa

    Gamboa Senior Member

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  15. Flashster

    Flashster

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    Thanks everybody.

    My swallowing issues haven't got any better. On liquids only. I just tried eating a packet of crisps really slowly and ended up coughing for about an hour afterwards.
    Its down to complan (liquid meal) and soup and occassional ice cream. The weird thing is that I've had ME (or so they tell me) for 8 years and never had this type of swallowing issue or to this extent. I haven't been bed riddne for some years. The time I had swallowing issues at the beginning, it was food just stopping deep in the oesophagus. But now anything remotely solid is getting caught in behind my adams apple. I then get loads of mucus and end up coughing for ages - presumably some of it has gone down the wrong hole.

    Had people suggest all sorts of fatal diseases to me online.

    Feel very, very low. Feels like I'm dying. I've booked a neurologist, and an ENT refered me for Barium swallow which I've yet to have.
    Francelle likes this.
  16. Nielk

    Nielk

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    Hi Flashster,

    Welcome to the forum. Sorry to hear about your problem. I also have swallowing problems frequently. I think in my case it's connected wit allergies. I think that the histamine swells up the muscles of my throat and therefore narrows the opening. Could this be a problem for you?
  17. Flashster

    Flashster

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    It could be allergies I suppose - which have now also got vitamin and mineral difficiencies mixed in for good measure.

    Interestingly, I tried, foolishly, some crisps last night. They weren't actually potato crisps but those corn based onion rings - thought they'd mush up and be easy t get down.
    However, within seconds my gullet gunked up with gluey phlem. I couldn't work out if it was in my chest or throat, but coughed the rest of the night anyway.

    Even drinking water in the morning didn't get rid of it - it seemed to then come back when I drank. In fear that my oesophagus was totally blocked I gulped a few mouthfulls of water down and water for it to come back up, but it didn't. It did gunk up more though (or was it my chest...?). I sipped some worm soup and that seems to have shifted it.

    But it didn't make me wonder if there's a reaction going on a little. Who knows.

    I'm not sure if I want them to find something in the barium swallow test or not. If they see a lump thats bad, but not ALS (the camera up the nose didn't see any lumps). If they don't see a lump, I guess it still could be ALS. I guess the best outcome is some sort of web/stricture. That is a possibility I supposed as I was told I was short in Iron, (as well as vitamin D) which can, I read, cause these mucus webs to form in the oesophagus.

    In amongst all this I'm having trouble pronoucing certain words - (uh-ho) - hopefully thats just ME/anxiety again or mineral difficiency. Its my lips not moving quick enough not my tongue.
  18. Flashster

    Flashster

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    Thank you all for your suggestions. I'm researching each and every one.

    Went to see the Neurologist last night. One with experience in Motoro Neurone disease. He said, after a thorough examination that I was not exhibiting signs of Bulbar ALS. He said he could do more tests (MRI, EMG) but said he didn't expect them to show anything and it would be largely to satisfy me, so we decided not to bother.

    I am relieved, though still trying to live with the swallowing problems. He did say that he didn't expect the barium swallow to help much and that they should really do a video fluoroscopy. He also made suggestions on how my doctor/specialist(s) could be helping me.
  19. leela

    leela Slow But Hopeful

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    Flashster,

    It is so nice to know you're getting competent help from someone who seems to really care, and who also appears to be deeply respectful of your desire to understand and heal. I am glad he was able to reassure you enough that you decided to forgo that set of tests.

    I wrote you a long post the other day that got zapped into the ether.

    It had to do with what you eat while you are working with the swallowing challenges--many foods themselves are allergens and will stimulate an inflammatory response, so might be adding to your difficulty. Crisps and processed foods in general often have MSG and other artificial flavourings and preservatives that the body treats as an "enemy" because they are so unnnatural and thus unrecognisable; and in our case of immune/autoimmune dysfunction, I believe that process is only amplified.

    I encourage you to avoid anything processed, tinned, packaged or overly refined if you can. It's more work maybe, but in the end may be the best help.

    One big batch of freshly made organic soup (do you have a blender or stick blender?) can last a long time, especially if you store it in individual servings in the freezer. Organic soups, broths, and purees will not only be easy to eat, but will bring you vitamins, minerals and nutrients you might be lacking with such a restricted diet. Check out recipes online too for bieler broth and potassium broth. These are simple,
    inexpensive broths you can make almost effortlessly that will pack a big punch nutritionally, and you can sip them all day.

    Foods that can cause immune/allergic responses in a lot of people are:
    Nightshades: Potatoes, tomatoes, bell peppers, eggplant (sweet potatoes are fine, easy to mash up with some "good" fat*)
    Corn, wheat, soy
    Dairy, depending what country you live in
    Eggs
    Nuts, especially peanuts
    Processed foods with additives, colourings, flavourings, etc

    Universally hard on the system are white sugar and flour, which should both be avoided entirely.

    Since you are losing weight, you could add *unrefined virgin coconut oil to your diet, extra virgin olive oil, and lots of avocado.

    I hope you do not find this presumptuous. I only wish you the best throughout this ordeal, and a quick resolution :)
  20. Flashster

    Flashster

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    Thank you all for your kind replies, particularly Leela for taking such time to write a very helpful message. I am taking notes!

    Life feels awful right now - swallowing is too hard and tonight even breathing is laboured and too much effort (hence why I'm typing at 4:00am!)

    I really don't understand why I'm feeling like this after having m.e. for 8 years and having got through the worst of it (so I thought).

    I'm now having to cancel my barium swallow becuase I cannot manage to not swallow anything from 10PM until 2pm next day. I'm too weak and my blood sugar is too low. I'll have to try to get a morning appointment which means another few weeks wait.

    Getting weaker by the hour...

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