So Tired of Living With this!

Discussion in 'Fibromyalgia Main Forum' started by dorothyr, Dec 10, 2008.

  1. dorothyr

    dorothyr New Member

    LadybugMandy and all others,
    I know just how you feel. You think maybe there is hope of finally feeling better, only to have the rug pulled out from under you again! I will be 46 years old on Friday, Dec. 12th and have been living with the "Fury of Fibromyalgia", since I was 18. I think the hardest thing about it, is the disappointment of not being able to be yourself, because of "always" having to pretend you are not in pain. Then there is the fact that no-one truly understands what you are going through!, unless of course they also have Fibro.
    I decided when I was finally diagnosed with Fibro, after many drug trials,feeling like a zombie,but still in pain, and physical therapy,with which the therapists had no clue what to do with me,to pain specialists whose office was filled with patients who could hardly hold their heads up,to support groups filled with people who had given up that I wasn't going to let Fibromyalgia win! I stopped taking all the medicine, and lived each day, doing what I was able to do, and waking up in horrible pain, only to start another day, doing my best to stay positive.
    One thing I have found extremely helpful,,, before you go to sleep, prop your head up with a wedge or pillows, and prop your legs under your knees. I discovered this helped by falling asleep on a loveseat one night and when I woke up in the morning my back wasn't hurting. Please everyone try it,,, you might have to work with it for a couple nights,,, to get the pillows just right,,, but you will be amazed what a difference it makes. I bought myself a temperpedic adjustable bed because of the difference it made in my quality of life, not waking up feeling like poison was surging through my back.
    Another thing I recently bought was a used hot tub. It relaxes my muscles more than anything ever has! So much so, that when I come in the house , I am in no pain, and usually fall asleep within about 15 minutes. I am now feeling like you though, because I returned from work today, and went out to turn up the heat and found that my deck is sinking. I really needed to get in it because I have been having a severe flare up and I can hardly even walk.Now , tomorrow, I am going to have to drain it, until I can get my deck reinforced or something which will be hard to do in the winter. Of course, no one is there to help me either to even get it drained, so I will struggle through, hardly able to walk until the hot tub is drained and winterized.
    So you see, we all "with Fibromyalgia",do understand what it is like to struggle with this horrible,horrible demon we seem to have strapped to our backs.We just all need to stick together and realize we are not alone and keep faith and hope that someday soon!, SOMEONE will find a way to end this misery for us! Try to keep your faith and get back your determination, as I will also try to find the strength to do! My heart is with you!!!!!!!
  2. TeaBisqit

    TeaBisqit Member

    I think the worst part is all the things we can't do and can't have because of it. And as the years go by and we wait for help that never comes, we watch life passing us by. Too many days spent with flares. Too many days of stupid docs and such. Maybe someday we'll know the reason we all got this.
  3. CanBrit

    CanBrit Member be living with this condition for 28 years, well I just can't imagine it. You must have seen so many awful things over the years, especially how Fibromyalgia patients were treated.

    I too have a temperpedic bed. I don't know how I lived without one before. It helps so much...until I try to get up. I've been off work since July and am finding it very hard. I love my job, my career very much, but it just became too much.

    Do you find that with age, your FM is getting worse? I know I had many of the symptoms when I was younger. Insomnia, IBS, neck, shoulder and back pain. An severe infection started me going.

    I hope you feel better soon and the situation with your deck resolves.

    All the best,

  4. greatgran

    greatgran Member

    Oh, how I can relate I hate this misery . I am so miserable , confussed that I doubt my Dx all the time. Hoping for answers that don't come, never know from one day to the next how you will feel, can't make plans and my family depends on me for so much..

    SO tired of trying to struggle thru each day and I seem to be much worse as the years go by..

    I have to drive and pick up my grans from school and I just don't think I can even do that anymore.. My house is a wreck, laundry etc. but to weak to do anything today except I have to give the little ones a ride after school. When will my family ever get it, its not them its me I just don't won't to admit I am not able to do .

    No answers but I completely can relate. I am so in the doubting mode as it has to be something else..

    God Bless,
  5. dorothyr

    dorothyr New Member

    Thanks for the,"Happy Birthday". I did have a very good one. I went to my sons house, who is in college,and spent a few days. I think that was just what I needed to get my spirits up again. He and his friends treated me like a queen!
    I do know what you mean about things we can't do and can't have. Also, I understand about the years passing us by because we feel we have missed out on so much. Even if we force ourselves to do things with our family, we are in so much pain, and concentrating so much on hiding it, so we don't ruin everyone elses time, that we can't enjoy it ourselves!
    The doctors, that is another thing I can't stand. None of them, that I know of, have any idea or even belief in Fibro. When you go into a doctor's office and tell them you have it, I believe they cringe and think to themselves, oh no, here is another hypochondriac, which we know is the farthest from the truth.I think the next time someone tells me it's "all in my head", I will tell them to think of the last time something hurts so severely that it wakes you from a sleep.& How can pain be in your mind if it wakes you from sleep, when your mind is supposed to be at rest? I do believe that stress plays an important part in our flares, because as long as I was at my sons, I was happy and I was in pain, but not severe. Now that I am back home, it is returning with a vengence.
    And then there is the reason we got this? I also wish I knew the answer. I hope someone would find a substantial reason, because I just keep wondering what I ever did so bad to deserve such an illness.
    Hang in There,,,,Maybe some day we will know the real reason.
  6. dorothyr

    dorothyr New Member

    Dear CanBrit,
    Yea, that is a long time. I really don't know how I've managed to keep going besides the fact that my son and my family are so close. Even though they don't really understand, they do their best.Yes, I have seen many people who have gone through terrible lives with this illness. My cousin is one who can't even get out of bed most days. The doctors have her on so many medicines and she still can't.That is why I stopped taking most of them. I am taking Cymbalta just to help with the depression that living with fibro. has caused and to help keep my spirits up, but it doesn't do much about the pain for me.
    I know what you mean about the temperpedic bed. I also don't know what I would do without it, besides prop my pillows and pray that I have them just right, or sleep on a love seat with a pillows under my knees and back propped up. That's how I slept for years until finally my son talked me into the bed, because he said, mom, I feel so bad that you have to sleep on this loveseat.
    At age 18, the doctors kept telling me I had mononucleosis,was even put in the hospital for it. Then a couple more times was diagnosed with it again. Then finally someone tested me for Ebstein Barr Syndrome. I believe that is what started it all for me. To this day if I don't get enough rest, my throat swells, and my lymph nodes throughout my body.Of course my doctor doesn't believe that,,,,,, he thinks the Cymbalta has helped because it's in my mind, but I don't even have the energy or the patience to fight anymore about it. Someone in one of their letters on here said she wished some people would get fibro, so they could understand, and she felt bad for that. I understand where she is coming from,,,,,,but the only one I wished it on was my ex husband,lol.He never got it, and humiliated me for having fibro, everyday.He used to even call me a mental case.
    Yes, I do find that it is worse in some ways with age and have had to also take time off from work in the past. I do understand how it becomes too much and wonder just how long I am going to be able to keep going myself and I also love my job, but it is very stressful, and no one there understands or cares to even think about understanding.
    Well, I went to visit my son who is in college for a few days. He helped to pick my spirits up again, and remind me of the reason I keep going.I thank God for him everyday! He is what I live for!
    My father pulled through and worked on my deck today, and said he will be back tomorrow to finish it, and I should be able to fill up my hot tub again. That is such a relief.
    Hang in There,,,, We Are Not Alone!!! Dorothy
  7. dorothyr

    dorothyr New Member

    I still doubt my Dx too. Sometimes you think to yourself, it has to be something like cancer or ms,etc.The day I was diagnosed, I went there thinking I was going to be told I had lymphoma because my whole body hurt and I couldn't even hold my head up hardly. It is very tiring to struggle through each day, knowing that tomorrow could maybe be a better day, but worrying that it might even be worse.Some days, It's an effort to even get a shower, because of the energy it takes to dry off and get dressed.My family also depends on me soooo much that somedays, I don't even want to get out of my chair because I don't know if I will have the strength to do all they need.
    Thanks for your response, because at least we know that we are not alone in our struggle, and it's ok to admit that sometimes we just have to say no, to people.
    I'm ocd with cleaning my house, and have just moved into a new one, which sent me into a major flare.So the wallpapering and painting that still needs done, is just gonna have to wait. It's driving me crazy, but I can't even keep it as clean as I would like to right now either.
    Hang in There! We are not alone in our struggles and misery! Dorothy
  8. ruti

    ruti Member

    I am so sorry you feel so bad for so long. I am also fighting for many years, but your situation is more severe.

    What i found is to try to eliminate or "clean" as much of the things that "stick" to me and to improve the immune system. That will reduce the pain and the other symptoms.
    You might try to get new diagnoses and to treat it. Try these directions:
    get a measure of the viruses now - do you have Epstein-bar virus active now?
    do you have intestinal problems?
    check for bacteria, fungus (candida), viruses, ameaba, paracites (get a few stool tests - it might be worth going to a good lab who can find out these things.
    Colonics is very helpful

    I think it can be helpful to treat the other things that put a burden on the immune system and this would improve the pain and everything else.
    It might be a good idea even if they don't find specific parasites to take a few courses of Flagyl and some Nystatin if there is fungus (candida) and if you have access to anti-viral medicatios (I am not knowlegeble about these)

    what can you do to improve the immune system?
    These are the things I do again now and checking many directions.

    I hope you feel better.

  9. Nanie46

    Nanie46 Moderator


    Please read my response on your thread "Only You Can Help Me". My story sounds alot like yours and there is information there that could possibly help you.