Swallowing question & Family Rant

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Apr 3, 2010.

  1. Elisa

    Elisa Member

    Hi All,

    Two areas I need help with...

    The first is after my three year fever went away (yeaaaa, fingers crossed it wont come back) I now have severe swallowing problems. It started over a year ago within a few hours after a root canal. It went away for a while somewhat and now is back so much that all i can do, again, is liquify/puree my foods. I have lost 10 or more pounds in less than a month and my throat i think has bleeding ulcers on the back on tongue (lingual tonsil area I think?) Been to many ENTs and dentist - they care so little it always suprises me...still.

    Need to talk about another thing too...lately not that lack of family support isn't bad enough already but my family is playing "I could be sick and get well better and faster than you" mode. In other words, everytime I speak with my parents (by phone) they bring me to tears saying "they would keep trying", "they wouldn't give up", "they'd find an answer", "they'd get a great and caring doctor" you get the picture. And being in the very bad place that I am in - not being able to eat following a three year fever I am just not sure how much more I can take.

    Anyway I guess this is a vent of sorts. I am scared. I try to be brave. But my survival fears are sky high and there is so much lose of control with this illness. It just seems too much to bear for me anymore.

    I am so glad you all are here - it does help me feel much less alone.

    Anyway, my prayer this Easter eve is hope that someone out there, like me, will have a message for me, or an idea, or help or guidance.

    God Bless You All,


    May Easter bring us all some much needed comfort and relief.

  2. 3gs

    3gs New Member

    Hi Elisabeth

    It sounds like u have hit a rough patch. Swallowing problems are common with this. Do u have a lot of phelgm too? With this dd who knows what dental stuff and trigger,many of us have problems with going to dentist. Have doc or dentist found bleeding ulcers? I will get throat spasms and not be able to swallow.

    So glad to hear your fever went away. Families can be hard to deal with,they just don't get it and they are the ones u most want too.

    maybe a muscle relaxer or a numbing throat spray would help. ask your doc. Furstating when they dont help,I know.

    Dont know if I helped but wanted u to know someone heard and cares and understands.

    My prayers are with u
  3. Elisa

    Elisa Member

    Hi Jen,

    That is just what I needed...to be heard. AND you did help too!!!!

    Yes, lots of phelgm - stuck in the back of my throat - gagging me - night and day, yuk.

    Yes, the dentist triggers major problems for me - a number of years ago got asthma bad following an appt - took 4 yrs of antiiotics to help the severe breathing issues.

    Families dont get it - major denial I guess - and it does hurt so so much because I need support, not criticism.

    You are very reassuring and its good to know that others go thru the same stuff...Sometimes I guess it feels like I'm yelling into a canyon with no echo...until I hear from a friend. Thanks so much Jen!

  4. 3gs

    3gs New Member

    Glad to see u were on I so hoped u would get message. You sounded like you needed a cyberhug!

    Phelgm is another biggie with this. Do youo take mucinex? Sorry Im in a bad flare and brainfog isnt letting me spell. guaminifsen(spelled wrong). You may read on here about the guaif protcol.

    Wow that is awful about asthma. We are very senistive to the numbing shots, I have to tell them not to use it with epdrine in it. Also no latex gloves. No longer will do root canals. If u ck search here there is lots on dental stuff.

    Maybe thats what my daughter is doing-being in denial!! I guess its hard to get it if u havent walked in our shoes. but sometimes u just want them to shut up and listen!

    You are so welcome. You have a happy Easter
    [This Message was Edited on 04/03/2010]
  5. MIssAutumn

    MIssAutumn New Member

    Swallowing is amajor problem or lack of. My throat will just stop working, it doesn't close up or anything it's like it forgets how to work. I have learned to just relax and it will pass. I use guaifenesin for the phlegm if it's bad, I get mine at IHerb or VitaCost I forget which one, it's called Air-Power.
    Most people do not understand this illness whether it's Fibro Lyme chronic fatigue or any chronic illness. During one of the worse episodes of my throat not working my husband just stood by and watched me! We were eating and I thought something had gotten tuck in my throat so I took a drink of water and that just stayed in my throat. I left the table and went into the laundry room and nothing was happening, I couldn't breath I finally prayed my way out of it- which I do a lot.:) Dear hubby just watched then back to eating his dinner.
    I'm sure we all have stories like this, which is sad. You aren't alone in this, I am a very strong Christian and know that God is in control, always!, and that helps with all of this.


  6. deadtired

    deadtired Member

    Elizabeth, I have had these swallowing problems also. At its worse, my throat would like chke up up and I couldn't breathe . I'm not sure if these are asthma attacks, but it seemed to appear around the time that I started to develop asthma. I started to realize that it was indeed connected either to the asthma, or it was connected to either allergies, even food allergies, OR if I was currently fighting a cold or flu. I learned to also to stay away from anything that I thought might trigger the swallowing episodes. Anything with MSG, anything that was grilled. or had alot of flavorings. Most importantay, I also learned to always have my inhaler with me at all times . It helps
    immediately, as it does with asthma attacks. I came close to feeling like having one of those choking, swallowing episodes tonite at dinner. I realized the vege burger had that grilled flavoring stripes on it. I also have the allergies going on with Spring, and generally not feeling well, as I'm trying to get over a flu bug. I am always surprised when all of a sudden these symptoms arise. That is why I always carry my inhaler and it does seem to help.

    I am sorry you are feeling pressured by your family. Your situation is vastly different from mine. My extended family has refused to even speak or acknowledge my health problems. I'm not sure if they even believe that my husband or I are sick. I tried early on to explain this disease and I have learned that they either don't get it, or they don't want to have to deal with it so therefore they pretend it it doesn't exist. I think one of the most difficult things about this disease has been with the interaction with family. I have resorted to putting on a false front around them and praying I can get through the day when I am with them. Probably not the best approach, but I guess we all have to find our ways with family as they are all unique.

    Hope this helps a little. Nancy
  7. umm_denise

    umm_denise New Member

    Hi. I totally understand what you are going through. I think there are points where we become unable to be an advocate for ourselves. We get so tired, drained, discouraged, or just lose the ability to function altogether...and we are still expected to "fight"? I have come to the conclusion several times that I need my own personal patient advocate. Easier said than done! I don't have someone in my life who can devote the time and attention and energy it takes to aggressively pursue some sort of answers and recovery. Even the few people who are accepting and understanding of what I go through cannot be that type of aid to me. I wish they employed patient advocates in the medical field, to help us facilitate our doctor appointments and all the other details that come along with trying to find some relief. I have no answers, just understanding. Hang in there...it is a blessing to find solace among other sufferers:)

    I also have trouble swallowing. No sores or blisters, just things getting stuck in my throat(pills, ground beef, other small foods). I have had referrals for a scope test, but was unable to follow through with the appointment...cannot even remember why now. There is a very significant before and after with fibromyalgia. On top of everything else we must deal with, we have to mourn the loss of our former self...so alive and clearheaded, sharp memory, sharper wit...all a distant memory. But I still hope for some level of recovery someday. At least I would like to be a wounded survivor someday, and maybe start an agency of patient advocates for other sufferers:) Take care as best you can, and feel free to rant anytime!
  8. kellygirl

    kellygirl Member

    I was going through the topics and found this one. I use to post about this and then not many seemed to have this symptom.

    Over the years I have learned not to try to eat meat esp. out in a restaurant. I usually will order soft food. Also, if I am home alone, I will not attempt anything getting caught in my throat.

    I was told it was psychological, too, by someone I had gone to, either a chiro. or massage therapist.

    The x-ray did show something that is not right in my throat, food gets caught there sometimes.

    I had a whiplash and arthritis of the neck and I had to get muscle work done on my jaw and inside of my mouth, I was literally tongue-tied. I would get so tired, I could not speak.

    You need muscles to eat, speak, swallow, so it makes sense that fatigue can affect them, too.

    Today, I actually do swallow a pain pill that I couldn't before, but still can't swallow capsules or eat hard chunks of food. I choose soft foods.

    Thanks for posting.

  9. jole

    jole Member

    I have had the swallowing difficulty for nearly 6 years now. Can't get pills down without eating something immediately following. I can eat a few bites of meat, then the next bite will get down just past the "V" part of the throat and just sit there. It totally closes my throat off, like a spasm, and tears can be running down my face. I too get up and leave the room. It takes several minutes for the throat muscles to relax enough that I can swallow again, and by then the last thing I want to do is eat MORE! Great diet plan for someone you don't like..haha...

    Family is a biggie........and so very tough to deal with. Lots of families have broken up over these DDs and there's nothing we can do about it. We can do no more than our best, and if that isn't good enough for them, tough. And yes, we'd all love tp find a smart, caring, compassionate doctor who knows all about FM/CFS, but very few have found one! Sometimes I don't think they care........or perhaps they don't feel we care.....not sure. But I sure wish you the very best of everything! ..........Jole
  10. kellygirl

    kellygirl Member

    My 3 sisters and I all have been dx'd with Fibromyalgia and 3 of us do go to this one doctor. I was dx'd with CFS in the late 80's, my doctor had just gotten out of medical school and knew immediately what it was.

    I had mono at the time. Since then, I have been dx'd with FMS and Myofascial Pain. I have the same doctor since. I was one of the few that didn't have a problem with a diagnosis.

    I don't believe my children accept that I have pain, though I was accepted into SS disability and they don't just hand it to anyone.

    Just let them feel it one moment, I would not wish it on them anymore than that.

    My lesson in all of this is not to judge people who park in disabled spots and come out of the car looking perfectly fine, I don't know what they may be feeling like inside.