Swallowing Problems - Need Advice

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Feb 17, 2009.

  1. Elisa

    Elisa Member

    Hi All,

    Can anyone help me with this? Background: I have had a low grade fever for 20 months or so. Have noticed when I go to the dentist I get MUCH worse. After the dentist four yrs ago I developed breathing problems - severe.

    This time (after a root canal) I developed severe swallowing problems. I am better when I get up (meaning I can eat my cereal) but as the day goes on I can't swallow anything but liquids and yogurt type foods.

    Have weakness too.

    Is this familiar to anyone? I have been sick with CFS/FM for 13 yrs.

    I have no idea who (doc-wise) to go to and HATE going to doctors as it adds to my depression and feeling that no one can ever help me (I have this hopelessness very bad). Not to mention that they mostly think CFSers are either crazy a malingerer in my area.

    ENT - GERD/LPR? Neuro - Myasthenia gravis? Infection? Viral, bacteria, fungal? Anxiety? Muscle spasms? Goodness...

    I am trying hard to keep going - have lost 5 lbs since last Monday. And I never can lose weight even when I want to.

    Praying for some imput!!!

    God Bless,


    I am so upset about this that I am crying alot. My history has taught me that I can't find answers or I am look in the wrong places. Can anyone help?

    No matter how hard I try
    [This Message was Edited on 02/17/2009]
  2. toddm

    toddm New Member

    Hi Elisa I have the same problems, when all of my GI problems started (slow transit and esophageal spasm) I've had alot of throat troubles. After 3 years it's not any worse, or any better. My GI and ENT doc tell me it's all tied to reflux and spasms. I understand how you feel with doctors not understanding CFS in your area, it's same here in western New York. I hope you start to feel better and that you can find a doc that will listen and help.
  3. AuntTammie

    AuntTammie New Member

    I am not really sure what to tell you. Most of the swallowing problems I have heard/read about would seem to be more consistent (ie not better in the morning)....however, I really do not know much about this.....the specialist would depend on narrowing it down a bit, I think, but a gastroenterologist is another one that could be helpful. Maybe the descriptions on the following site could help you to figure out a little more about it, or at least who to see.....


    Good luck....I hope it gets better.
  4. daylight

    daylight New Member

    I have trouble with swallowing food /drinks at times to . Mine is caused by inflammation.
    There are so many different reasons as to why this problem happens .
    Here a link on it:http://en.wikipedia.org/wiki/Dysphagia

    This most common cause of this is GERD. Sometime a antacid helps but it could take a while for them to work. That is if the cause is acid reflux.

    Sorry that you have this problem is can be painful to eat with it.
    Hope you find the answer soon.
  5. Elisa

    Elisa Member

    Thank you so much for your support. It's good to know that I'm not the only one with this problem and problem with docs that are not CFS literate.

    I think I get spasms too...It's good to know that it hasn't gotten worse. I hope it gets better for you too!

    God Bless,

  6. Elisa

    Elisa Member


    Thanks for the link - it was very helpful! And thanks for your kind support...it really helps to hear from you.

    It is an isolating illness and it's so easy to get fed up and scared...

    Thanks again!

  7. Elisa

    Elisa Member

    Hi Daylight,

    Is your inflammation from GERD or something else? Have you found anything that helps...

    Thanks so much for your help - it is comforting to me!

  8. Elisa

    Elisa Member

    Hi Caledonia,

    You are always a great help to me - and you are so resourceful.

    I actually had a Clifford test done (twice) for dental material biocompatibility...because I just don't react well. You hit the nail on the head. The dentist followed the recommendations and used materials that seem compatible - but here I am again. ARGH

    I do use EFT - and it does help when the throat tightens up. And thank you for that suggestion - it is a valuable a tool.

    Good idea on protein drink. I need to find a gluten free one (am a celiac).

    Am VERY stressed by all this - so thank you so much for your reassuring and kind voice.

    God Bless,


  9. Elisa

    Elisa Member

    I wish I could talk to FindMind - she has had some swallowing issues too. Maybe she'll see this post. I sure hope so!

  10. Nanie46

    Nanie46 Moderator


    One possiblility to consider is lyme and other tick borne illnesses.

    Lyme can be misdiagnosed as many illnesses....Lou Gehrig's disease(ALS) which includes difficulty swallowing, CFS, fibromyalgia, MS, Alzheimer's, RA and many others.

    They are all neurological illnesses with many of the same symptoms.

    Do the symptom checklist on pages 9-11 of Dr Burrascano's paper which I am adding the link for:


    You must be pretty scared. Do some research. Pray that you will be lead in the right direction. I was. Good luck.
  11. AuntTammie

    AuntTammie New Member

    Depending on what you can/can't consume and what you like, you can easily make your own protein drinks using variations on this:

    1 cup of milk (or soy milk or rice milk or almond milk or hemp milk)
    1 cup of ice cubes
    stevia to taste (or other sweetener - I use stevia, though, bc there seem to be a lot of problems for many of us with regular sugar or other substitutes)
    1 cup of fruit (bananas work really well, so does canned pumpkin...you might have to adjust the amounts of all the ingredients to get the right consistency depending on what fruit you use)

    other optional additions....chocolate powder, vanilla or almond extract, egg beaters (or some other similar form of pasteurized egg), soy powder (or other protein powder), coconut, cinnamon, pumpkin pie spices (if you make it with pumpkin), yogurt, ice cream, etc. (Obviously some of these are healthier than others and some of these are things that some of us cannot consume, and like I said, you may need to play around with exact amounts depending on how thick/thin you want it....but this gives you an idea)

    Put it all in the blender and blend on high until you don't see/hear any ice cubes rattling around.
  12. Nanie46

    Nanie46 Moderator


    To follow up on the lyme possibility....I just found in the essay, "When to Suspect lyme" by Dr John Bleiweiss, that neuritis(inflammation of a nerve) of cranial nerve X (ten) can cause dysphagia (difficulty swallowing).....here's the link, it's about half way down and the paragraph starts with the word "Incidentally".

  13. Waynesrhythm

    Waynesrhythm Member

    Hi Elisabeth,

    Your description of your swallowing difficulty sound similar to what I went through for 3-4 years. I was dealing with my throat often feeling paralyzed for a few seconds while trying to swallow.

    Then about 3 years ago, I had an infected root-canaled tooth extracted. I had been suspicious of this tooth and had it inspected by several dentists over the preceding years. All of them said there was not a problem with it, even after inspecting it with the latest super x-rays they could take. I even had an oral surgeon talk me out of extracting it at an earlier point.

    Against their advice, I finally did have it extracted and my swallowing problems subsided over the next several weeks. (Most of the improvement occurred in the first couple days.) I don't have any problems at all at this time. I posted more on another thread in the past regarding swallowing problems. It is entitled "Kensie - Swallowing Difficulties" and can be accessed at:


    Best to you Elisa. My own swallowing problems were quite unnerving. I can only guess that this is a difficult thing for you to deal with.

    Wayne[This Message was Edited on 02/18/2009]
  14. kellygirl

    kellygirl Member

    Yes, that is one symptom I have had for 16 years.

    Along the way I had muscle release inside my mouth! I gagged, but the therapist actually goes into the mouth and releases the muscles, I was literally tongue-tied. He told me he was able to do that to a child that was unable to speak due to the muscles being tight.

    I had mono in the beginning and a whiplash injury and even my hands would clamp up during the night and cause bleeding in the palms.

    I was so tired I couldn't even speak at times.

    Today, I still will not attempt to swallow food such as steak. Esp. if I am out, it takes too much energy. I like soft foods or dipping my food into a drink. I have learned to accept it.

    It is not as bad as it was in the beginning, but still is not perfectly improved.
  15. daylight

    daylight New Member

    I have mix connective tissue disease . Its a comb of (RA,raynauds,sjorgen's,lupus,gerd,myositis),spondyolitis COPD FM.
    The doctors don't really know if its cause by the lupus of the sjorgens or the gerd.
    But I can tell you that for me the antacids don't help the problem. My doesn't happen everyday but it is a signal of a flare coming on usually. I also think that anxiety may also be a factor in mine.
    I also have neurological problem (seizures) and that may be a clue . However my ex doctors didn't care what the cause is if the problem is life threatening . I suspect that things may not be better with my new doctors as they are with IEHP but I guess I need to hope the best.

  16. Elisa

    Elisa Member

    Hi Nanie46!

    There are no words big enough tothank you for your help, support and kindness. I feel a calling in your voice - to help others...

    It is always in the back of my mind - Lyme Disease. I had been diagnsed with Lyme probably 20 yrs ago and was so so sick. They felt it resolved - but I will never know - unless I pursue that direction. Since I devloped breathing problems then fever and now swallowing - I am so weak I am barely able to survive...I keep waiting to "get better" so I can pursue some promising areas.

    I downloaded the Lyme paper and hope to read it over the next week or so. Thank you so much.

    God Bless you Nanie46 - wish you knew how important your voice has been to me through this...

    [This Message was Edited on 02/18/2009]
  17. Elisa

    Elisa Member

    Hi Wayne!

    Wow - I wondered about this...my upper left last and mainly 2nd to the last molars are the trouble makers.

    Can you share which tooth it was for you? Just curious...

    How did you know it was connected? Instinct or other signs?

    Mine was just time association and gut I guess.

    Can't wait to hear from you thank you so very much!

    Plus you know what, you gave me hope, which I really really need, because yours improved. Thank-you so much.

    [This Message was Edited on 02/18/2009]
    [This Message was Edited on 02/18/2009]
  18. Nanie46

    Nanie46 Moderator

    Hi Elisa,

    God bless you also, Elisa.

    Please go to this link and scroll down to page 60. It gives symptoms of babesia(another illness those ticks carry).....air hunger, fevers, dysphagia(swallowing difficulty)!!!!!!!!!!!!!!!!!!!!!!!!

    If you already had lyme, it is very possible that you were not "cured", but it remained dormant and then reactivated. It is also possible that you were rebitten, since there is no immunity to lyme.


    Thank you for your kind words.....all I really want to do is help people, so you made my day.

    God led me in the right direction, now it's your turn to follow His voice.
    [This Message was Edited on 02/18/2009]
  19. Waynesrhythm

    Waynesrhythm Member

    Hi again Elisa,

    I feel I'm pretty intuitive when it comes to some of the things going on in my body. I am also quite sensitive energetically, and sometimes test myself using various techniques. A technique I used was to simply put my finger on the tooth, and try to "sense" what kind of energy was emanating from it. I always ended up with a feeling of nausea when doing this.

    My root-canaled tooth was a front tooth next to big tooth on the right side. I had explored getting it redone using a root-canal procedure that is widely used in Europe. They use a calcium-oxide compound instead of Gutta Perca, which is able to seal the inside of the tooth and prevent non-aerobic infections that take hold in just about all root-canaled teeth.

    I traveled about 200 miles to have this done, and had a terrific headache by the time I got the the dental office. As soon as he started drilling in the tooth, the dentist asked, "do you smell that?" I did, and he proceeded to tell me that what I was smelling was the infection within the tooth.

    Almost miraculously, my headache simply disappeared in the next few minutes. I knew something was up, because normally a headlike like I was experiencing at the time would take many hours or days to settle down to a more tolerable level.

    Unfortunately, I was unable to complete the new root canal because there was insufficient tooth left. And after a few weeks, the headaches started coming back. That's when I knew I had to have the tooth extracted.

    I did have one other symptom that tipped me off to the fact that this tooth was a problem. I had a blister show up on my lip right across from the tooth. It looked like a fairly good sized blood blister, and lasted a few days. I intuitively felt that it was from the tooth.

    Besides my headaches and swallowing difficulties subsiding, I also experienced a significant decrease in my daily feelings of nausea. It really felt like a big weight had been lifted from my body.

    I don't know if you're familiar with kineseology, but you might want to consider finding somebody that is good at it, and can possibly give you an "energetic" take on the status of your own teeth. My own experience has been that dentists are quite unfamiliar with non-symptomatic infections in the mouth.

    Again, wishing you the very best. How's your intuition? :)

    [This Message was Edited on 02/18/2009]
  20. Elisa

    Elisa Member

    Hi Wayne,

    Wow again. I have been using kineseology on myself to see which teeth are a problem - I touch each tooth and try to see if my muscle strength changes - using both hands linked.

    I also had a blister on the roof of my mouth near the back two molars - such a coincidence. I am very sensitive too - to my advanatage and disadvantage at times (I guess untill I can accept myself a little better).

    The European method sounds fasinating - I never liked gutta perca - especially because I have latex allergies and wonder if there is cross-reactivity.

    I am chemically super sensitive and I believe this happens when the immune system is hurt and thus it is self-protective - just my own theory.

    You have a lot of wisdom to share and truly are intuitive - even on answering posts. You are such a help to me - thank you so much for sharing your experience - it amazes me how much "the universe" teaches and guides me - especially on this board...

    I have so many dentistry problems - where did you hear of this european approach and is there a book or articles you can recommend?

    Thank you Wayne!


    [This Message was Edited on 02/18/2009]