I have been thinking about how I felt when I learned that

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Sep 15, 2006.

  1. rosemarie

    rosemarie Member

    I have been thinking about the time I learned that there was a reason I was in pain but no one understood it.

    I was wawtching a movie the other day and it is a LDS flim and this one song really caught my attention

    "Brace me up"
    Who am I ? Where am I going? Here I sit all alone not knowing why. Brace me up I'm so discouraged, Help I think I 'm going to die.
    How it hurts to be a no one , How I wish that I was someone really loved. Brace me up I'm such a failure Heaven help me up above.
    Isn't there a someone with a hand to spare,Who can share what they have for my hunger?'Isn't there a someonewho will take me as I am And Brace me up not put me down Make me feel like I'm as good as another.
    Doubts and fears keep comming faster,Boy I'm haeded for disaster that 's for sure Brace me up I going under Help some one fine a cure."

    AT the time I really thought that having fibro was caused from something I had done. I have always been a person who if there is a disease that someone has I will react to it in a abnormal way.

    When I have taken some meds I react in a abnorml way and no one else has had that reaction . I would get illness's that were not "NOrmal and that No one else been treated for at least to my knowledge.

    I went to doctors because I had horriable periods at 15 yrs old and I was put on birthconrtol as that was to help me not have so bad of cramps that the pain from them would make me faint.

    It did help but not enough I still needed a pain pill to help ease this pain that lasted for 2 weeks . I had cramps for a week before my period and then the whole week of it. And I thought that I was the only person that did this or ever had pain like this from a monthly thing.

    I was abnormal even giving birth to my first baby. AS she came down she broke my tail bone and I had a epidural that was so strong and yet I felt it and screamed out that it hurt and my doctor told me to hold still.

    I had a healthy baby girl weighing in at 8 lbs 6 oz and I asked the doctor why it was taking him so long to sew me up , I was worried about it as I had been told that it takes about 20 minutes and I was still in the delivery troom after a hour after having my daughter.

    So when I got to my room and had all my IV;'s out and got to go to the bathroom to pee. I thought it was so great till I got too the first bed and was dizzy and I remember saying "Damn it's hot in here." When I came to there were ice packs in places that God never intened then to be. And my feet were up in the air and my head was on the floor.

    Later I learned that I had lost so much blood that I really was in great need of a transfusion but they had taken out the IV and my viens colapsed and I could not get the blood I needed. MY hemocrit was at 17 normal is 40 and I was given Iron shots and had my uterus smached down to make it firm up. I had to take oxtisosin to firm up my uterus with contractions and they hurt.

    Later in my life I had to have surgery and I had lost so much blood from having retrogragde medstruatation where you bleed thru the falpion tubes in to the abdomoinal cavity .

    I had been bleeding for several days and lost alot of blood and this time I had to be given blood. ONe day I had twn units given to me and the next it wsa one and still my hemocrit was low around 18.

    This all started with having my tonsils out and with in a few weeks I was in the hosptial trowing up and having direahha and was told that I had antibitoic indced colitis. And I was bleeding internally and my crit was 18 . I was given 4 or 5 units of blood then .

    From that time I have had strange reactions to my periods and extreme blood loss and haveing to have transfusionos as I hemocrit was so low that it was dangerous to me and each time I crit would be about 17 or 18 and even aftet being given blood it would only go to 20. So were the transfusinos the reason I got fibro? OR were they just on the way the start of things to come? Who knows?

    So by the time I learned about fibro and CMP I felt like it was my fault I had to have done some thing wrong to get this unheard of thing that caused so much pain.

    And It was so hard to be in pain all the time and to have to beg your doctor for 30 Tyelonyl #3's and get told to take them slowly so that they would last more than 2 weeks. How do you stop pain that is making you cry and curl up in the fetal postion to just wait 8 hurs for some pain meds. It didn't help or work for me. And no one wanted to belive that I was really having so much pain.

    AFter all I didn't look sick, my doctors were thinking that I must be addicted to the pain meds as I had been on so many rounds of T3's , I didn't have anything much stronger than that. ONce and a while if I had surgery for one more abnormal thing I would be given mepragan forte and that did help.

    But as the years went on I was in more and more pain and my doctors were not wanting to prescribe me any narcoitcs and the toradol gave me panic attacks so that was not helping things.

    I would go to the doctor in tears from headaches that would have me throwing up and I would be given a shot of phergan so I would stop throwing up and I would be given 1 yes 1 lortab #7.5 .

    And told that this was all that I would be given in that office and when I would go to any one else this doctor who tell them that I was a drug seeker. and I needed to see a pain doctor.

    I don't think my pain doctor did what my GP or GYN thought that he would do. Which was tell me that he would not give me anything narcoitc and that was the first thing he did.

    I as so shocked that I was given pain pills and didn't have to beg to get them that I questioned him and asked him so do you not think I am faking this? And that the only reason I came to you was to get narcitic pain pills and he said NO I DOn't. YOU have real pain , And went on to tell me what was my dx.

    NOw it is years laters and I am on stronger pain meds that my old gyno would have liked me to be on. I had female surgery just over 3 years ago and he sat with me for hours asking me why I took pain pills and that he felt I was addictied to them. And I told him that he didn't need to worry any more.

    HE asked me why Not your my patient. And I looked at him and said " You are respondisble for me now while I am in the hospital and after that don't send me home with any pain meds as my PAIN DOCTOR will take care of my pain from then on. And he just was shocked that I would tell him no pain meds from you any more ever again.

    I am bound to the doctor that I see. I signed agreemetn that I would get my narcoic pain meds from him one doctor and one only and ONe pharmacy only and if I didn't follow this I would not be allowed to see or be treated by this doctor again.

    So each time I end up in the hospital I call my pain doctor and for the time I am in the hospital the doctors can treat my pain but when I am home they can't. And it goes back to the pain doctor.

    So now I have written a novel about me and the pain I have. I still wonder what Did I do to get this? And some things I din't do like having DDD and facet sydnrome, radiupathy of my lumbar spine, sspinal stenosis, bulging discs, bad knees, shattering my wrist.

    YEs I am still a klutz but that only counts for my knees adn wrist the rest of my pains are from something I didn't do to myself.

    So is this pain from fibro real? Did I cause it? Did I cause the CMP to? I don't know. I don't think so. But there was a time when I did.

    Sorry this is so long you amy have to read it sevreal times to get it all read. I didn't mean to take up so much space and make it so hard to read. It just kept comming when I as writing about how I felt. Thank you for every thing ,
  2. Lolalee

    Lolalee New Member

    Rosemarie, I don't usually read posts as long as yours because it's so hard for me, but I just couldn't stop reading yours. You have suffered so much in your life and I'm so sorry. I had horrible periods as well. I remember being curled up in a fetal position with a hot pad and also staying home from school because the pain was so bad.

    I just wanted to tell you to please not spend too much energy wondering if you did anything to cause FMS. If your FMS is as a result of all your poor body went through, it certainly was not your fault. I am glad that you have finally found a pain doctor who can help you. I don't blame you for being careful to not break the contract you signed with him. You certainly don't want to lose your pain care.

    It doesn't seem right to have suffered so much and then end up with FMS, too. I think that way about my life sometimes. I've experienced a lot of pain and illness and abuse and stress in my life. One would think that now at the age of 57 I should be able to enjoy my later years now that my children are grown and its just me and hubby. But, oh well, what can you do? Maybe having so much hardship in life makes it easier to deal with what we have now. You learn to make the best of it and enjoy life as much as you can.


  3. Shannonsparkles

    Shannonsparkles New Member

    I'm too tired to write much tonight, but I was glad to read your post. ((love)) Shannon
  4. pam_d

    pam_d New Member

    I learned (not with my FM) but when I was dx'd with leukemia this year, that you can waste a whole lot of time and energy wondering "why? how did I get this? could I have prevented it?" and on and on.

    I decided I needed that energy to FIGHT. Most people (unless they work daily with benzene) never know why they get leukemia. And that is even more true with CFS/FM, I think.

    You have had a lot of pain in your life, and don't need the extra emotional pressure of thinking it was somehow your fault, or wondering why it happened. Give yourself a big but soft (((hug))) and be kind to yourself! You'll be better able to face the pain if you aren't beating yourself up over why and how it happened.

    And I do truly hope you feel better, Rosemarie...I'm going to say a prayer for you that things turn around.


  5. Mini4Me

    Mini4Me New Member

    for sharing your story with us.
    I'm glad you found a pain management dr. and I hope things settle down for you.

    I have a similar story/background. I'm sure if we all got together and went on Oprah, we'd help open some eyes to the problem of pain not being properly treated in this country.

    Thanks for your story.
    Love and hugs...

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