URGENT - Need Help So much.

Discussion in 'Fibromyalgia Main Forum' started by Elisa, Feb 24, 2009.

  1. Elisa

    Elisa Member


    I have not been able to eat for 2 weeks - can't swallow (following dental appt) was already extremely weak before this. When to 2 ENTS - one says hyoid bone inflammation and other says reflux maybe. Advice to take Nexium for a month and then see if I can eat. I can't last that long and they said "great reducing program"I am normal weight - have lost 10 pounds in 2 wks.

    Only family is parents - they feel I am a burden and a bother. Sister also feels same.

    Am out of my mind in trouble - have no one to help me. Am so heavy all over and chilled...Have POTS and low bp.

    How can I go another month without food?

    Please what do I do? Do I take a taxi to ER for IV at least. What is wrong with these docs. I have had a fever for almost two years.

    Think I am losing my mind - can't think and crying and going in circles. Not sure I can handle taxi ride.


    I have fought harder than I ever thought I could but this is too too much.

    Thank you my friends for all your help over the years - you have brought me great joy and decreased my suffering and showed my friendship and Kindess I had never known.

    [This Message was Edited on 02/24/2009]
  2. AuntTammie

    AuntTammie New Member

    I am not really sure what to say, but I didn't want your post to sit there with no response at all. I feel so bad for you and wish I could help. I will be praying for you. How are you able to take the Nexium? Is it just food that you can't swallow, bc if you could get liquids down, you could at least try some protein drinks or something like that. I would try a gastroenterologist, though, rather than ENT. They should know more about what is causing this and what to do about it. Most likely an ER wouldn't be much help, bc they would say that it isn't life threatening, and they generally have bad attitudes re" CFDIS and FM and related stuff, unfortunately.
  3. Rrrr

    Rrrr Member

    i agree, be careful about an ER. they may not "get it" re: CFS -- but if you don't mention the CFS, and just talk about the trouble swallowing food and water, they may be more agreeable to giving you a saline IV, or vitamin IV which could help. i have no idea, tho, just guessing here.

    do you have an alternative MD in yr area? they also offer vitamin IVs.

    can you force yrself to swallow? just to get some sustenance down? ice cream? anything?

    i'm out of my league here. i should not offer advice. i have no idea. i just want to offer my love and support.

  4. maps1

    maps1 Member

    I had terrible pain for several months thought of allmost all food made me sick, drank milk and some cheese and sometimes little bites of toast but i could drink something called ensure which helped.

    I had the same problem, no one took eating very seriously so i really feel for you. One thing though, you could go to emergency and ask to talk to someone, this will obviously be a physciatrist (sp) but it may help to have someone to talk too and get some clarity, they have a responsibility to make sure you leave ok.

    I have done this and it was one of the better decisions i have made during this illness.

    Good luck with whatever you decide.


  5. jarvis12

    jarvis12 New Member

    Just got on the board today for first time in long time. I feel so much for you. I want to know that you are ok. Please know that you are not alone and you are not crazy. People have a hard time with empathy for things they can not see. I have only ever found support from people who deal with our condition or a few Rheumatologists. Please keep searching for help and don't give up.
  6. lilchisler

    lilchisler New Member

    I don't post often but have been here a long time.
    I am so aggravated for you. I went through the same thing with my mom. She is in very ill health due to many heart surgeries. She came to a place where she could not swallow or eat or keep anything down also,

    The doctors kept telling her about the nexium ect. My mom went from 13o poinds (too thin already for a once 5'8 women) to under 85 pounds.
    It took 3 trips to the ER and her almost dieing of dehydratin before they decided that she had a problem.
    Once they started feeding her intoveniously, she had amazing improvement within hours.
    They found swelling and an abcess on her esophogeous (sorry for the spelling).
    With prednisone and anti-inflamatories, she recovered.

    I am frustrated for you because it is a sign of CFS and Fibro and Lupus and Arthritis...for them to not take you seriously is a crime.
    Do you have anyone that can go with you as your advocate?

    When the doctors realized that I was not leaving without some answers, they started to find out the problem.

    I am praying for you.
    They had my mom drink ensure or some other kind of protein drink if you can get it down.

    Let us know how you are doing.
    Call the American Medical Office in your area also for some action. I have had to do that in the past also.

    Best to you and know that we are here for you.
    [This Message was Edited on 02/24/2009]
  7. Elisa

    Elisa Member

    I need to bear witness of my experince with this illness...so her I go.

    I just never thought it would get to this point - the suffering is nonstop...the fever, breathing probs, pain (no sleep cause all of it) now not being able to eat. I am so frustrated and angry that the docs JUST DONT CARE...I am a person - I matter - and this illness is really hurting me and it wont stop and the worst is that no one really thinks it's real. No even my parents - and I have had it 14 or so years.

    I feel like I could scream and never stop - the crualty is unbearable...

    I have been tumbling downhill and picking up speed - I tried so hard to take every bad symptom and fix it but it started to excelerate on me and I am overwehlmed and weak and lost.

    I am stuggling to stay here - physically - I am battling and battling and waiting for reserves and they never come. I am EXHAUSTED.

    I have to try to pray more. It is up to Him at this point.

    I am grateful - so very grateful that I have found you guys though - otherwise I would have just disappeared. At least you guys know what happened to me.

    Thank you - God Bless,

    Elisa (will keep on trying - but am not strong)

    PS - I testify to you and God if I recover i will try to go to med school and treat only CFS/FM patients free until I die - so help me God. i will give them the dignity they deserve and as much help as I can muster. [This Message was Edited on 02/24/2009]
  8. lilchisler

    lilchisler New Member

    You are much stronger than you know to be going through so much!!
    You are a person of importance and you deserve to be treated with kindness and respect.

    Please do not cut youreslf short or feel that you are less than a person for having this (these) illnesses.

    I wonder every day, also, after about the same amount of years, how I get through some days...for me "but by the Grace of God go I".

    I have never had the full support of my family other than my mom and my husband and I come from a large family.
    I truly beleive that they just don't get it.

    I grew tired a long time ago, trying to describe something that even I don't understand.

    You are your best source of information on your condition.

    Just because others don't see your internal and emotional pain that comes with the physical does not make it less real.

    If they don't get it, then they just don't get it.

    It doesn't make you less of a person because you are sick and you certainly are NOT WEAK.

    I read these posts and know that I am surrounded by some of the bravest and strongest people that I will ever meet.
    I gain strength from their victories and I am saddened when they feel defeat, but I do know that I am not alone.

    I am usually "up all night" ..it's my nick name...so know that I will be praying for you in the middle of the night also.

    Godspeed to you in receiving some help in this situation.
    [This Message was Edited on 02/24/2009]
  9. Forebearance

    Forebearance Member

    Oh my gosh, Elisa, I am so sorry you have to go through this. I can't believe how much you have suffered!

    You deserve to be helped!!! I hope you can find a doctor who will give you a nutritional IV. It doesn't matter if it's a pediatrician, a vet, whoever. Please keep looking for a doctor who will help you.

    It's awful enough to be going through what you are going through, but to feel so alone while it's happening is even worse.

    Please hang in there, if you can. I'll say a prayer for you.

  10. Janalynn

    Janalynn New Member

    Please do whatever you have to do to get some help. Forget mentioning CFS, tell someone you can't eat, can't swallow, whatever the problem is.
    I am wondering too - can you get liquids down? If so, get some protein drinks. I'm assuming you can drink water or you wouldn't be able to sustain yourself for two weeks.

    I believe that those of us with CFS or Fibro are some of the strongest people on earth!!!
    We often feel weak for feeling weak. We endure so much more than most people on a daily basis. I don't even need to go into how much and what in particular - we all know.

    Remember even though you're feeling low and weak, you ARE strong - you WILL get the help you need because that's what you're made of - we're all survivors!
    Go to Urgent Care if you need to. Don't listen to one doctor saying something stupid and idiotic. But like mentioned previously, get yourself some protein drinks, you can make them as thin as you need to - to sip them down with a straw.
  11. Slayadragon

    Slayadragon New Member

    Elisabeth, are you still in the same house? The one that you got remediated a number of years ago?

    If so, is there somewhere else you could go stay for a while?

    I don't know if your house might be having problems again. It's hard to know, after as extensive of a remediation as you had. That stuff grows back pretty easily.

    I do know that some of the people who are the most sick with CFS-like illnesses have had mold problems, and that the symptoms tend to get worse and worse over the years. It thus seems to me at least worth a try.

    I wouldn't expect you'd get hugely better right away if you moved elsewhere.

    But if that's what's stressing your system to the brink, perhaps removing that stress would at least get you out of this danger zone.

    I've become increasingly convinced that people do die of toxic mold poisoning, even when it's attributed to other things.

    I don't want to speculate on whether this was involved in the recent death of grammy/dancing fingrs, or to get on a soapbox about it. But she herself stated that she had a problem with toxic mold in her home the few months prior to her death, so it certainly might have been.

    Even if the mold is just a contributing factor, it's one that seems worth addressing. Especially considering that you're not getting help elsewhere.

    I think that I have an old e-mail from you in my files. (I've changed my board name since then....it used to just be my full name.) Let me know if you want to write.

    Slaya/Lisa P.
  12. SpecialK82

    SpecialK82 New Member

    I am sorry so Elisa. Please know we are here for you. I agree with the advice given - drink Ensure or Boost if you can get it down, and only tell the ER or another doc about this specific problem and not the CFS.

    It is so horrible that we can't rely on our medical system to help us in the way that we need!

    You will be in my prayers - please let us know how you are doing, I will check back for an update.

    Soft hugs,
  13. hermitlady

    hermitlady Member

    I just thought I'd let you know that you have another person here that is thinking of you. I'm not much into prayer, but I will say one for you.

    Please don't give up, I know how hard it can be tho. You need further medical care. Somehow, somewhere there has to be someone to help you. Gather enough energy to get on the phone and find a dr or ER that can help you, you can do it!

    Keep us posted and keep coming back for support. You deserve to feel better, we all do. I'll be sending positive thoughts your way.

    xxxooo Hermit
  14. loto

    loto Member

    i don't really have any answers for you except, please call an ambulance for yourself! No matter what the cost, if you just pay $1 a month they can't do anything to you! I am so sorry your family feels you are such a burden. That must make you feel so much worse. But, please get some help and call an ambulance. I can't believe the doctors wouldn't do more for you! Not being able to eat is a serious condition, and they should've admitted you into a hospital for nourishment, and to find answers.
    best wishes, please let us know that you are getting the help you deserve and need

  15. loto

    loto Member

    I pray for you and all of us also. Someone very important to me told me this, and I'm sure others have heard it before also: "GOD only gives us what we can handle". I truly believe in that. While there are times I wonder why I go through what I do, I always tell myself that quote and realize it's true. I will wait to hear from you saying you made it through med school, and ask you to be my doctor!

  16. sunscaper

    sunscaper New Member

    Dear Elisa,

    I have heard of others who have been unable to swallow in later stages of ME/CFS..as others have stated I would not tell the hospital that it is due to this..but I would demand NUTRITONAL IVs to replenish, yourself, as of now, indicating to them, that you CANNOT SWALLOW, if that is the case. I know of one woman, who had to go into long term care in the UK...

  17. 3gs

    3gs New Member

    Elisabeth i just saw your post and cried. Iam so sorry for what you are going thru.

    Could you be having a reaction from your dental visit? I have been in a nightmare for months following dental appts.

    Go to the ER. Docs did this to my dad and he ended up with a perforated ulcer. Swallowing is a serious problem with us and it did finally contribute to my dads passing.

    You are a special person and needed here. Understand about the family and just wanting a break from this crappy disease. This is the lowest I've ever been so your post was like me writting it.

    Do you have a friend to help you? Try to stay strong and refuse to leave er til someone helps you.

    hugs jen
  18. jmcdelaney

    jmcdelaney New Member

    Elisabeth -

    Was the visit to the dentist just a 'usual' cleaning or did you have other dental issues addressed?

  19. SpecialK82

    SpecialK82 New Member

    Elisa - How are you doing now? Any better?

  20. acer2000

    acer2000 New Member

    Did they place or remove any mercury containing fillings? Just curious... If you really can't eat and your loosing weight, go to the hostpital. They can't really refuse to treat you, at least to stabilize you.

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