A question for you?

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, May 11, 2006.

  1. rosemarie

    rosemarie Member

    I have been reading the posts tonight and once more I read one who has a parent or step parent that seems to know far more about fibro that the step daughter does and she is the one living with it.

    So this is my question for you. How is it that our family , friends, people on the street, the grocer, the baker, any one we talk to some how have found a cure for fibro and yet they don't even know what it is. Yet they will share every thoght they have to tell you that they really KNOW more than you do.

    I have lived with this DD for so long and I have been told that first I have fibro and then No you don't , then yes you have it along with CMP.

    I have tried for years since before I had this knowledge that there is really something wrong with me. I have saked them to read the Letter to Normals, but they tell me that they all ready know all about fibro becuase a friend of a friends aunts sister has it.

    And she is been on this diet that she can't eat anything white , sugar, flour, no sweets, no caffine, no red meat, low carbs, certian veggies and she must eat at certian times and on this diet is has lost an amoazing amount of weight and she just feels so great now. So MOM why don't you try this? Oh and she does not take Narcotic Pain meds.

    My self I have been dx'ed with degenerative disc disease, spianal Stenosis, facet Syndrome, CMP, 2 buldging discs L4-L5 ** L5--S1, fibro , arthritis in my knees and wrist and back,extreme fatique , sleeplessness.
    But if you were to ask my famiy what is wrong with me they would tell you that I stay up to late and I think I am sick when I really am not. AS there are no tests for Fibro that you can show them on paper and of course that last one "YOU DON'T LOOK SICK"

    I may not look sick but I walk like I am in my nineties, and am really over wieght. That part is true I am over weight, I have been told that if I would just lose weight & exercise ALL OF MY pain WOULD GO AWAY Right !

    I have begged my family to go to the doctor with me so that they can be told from my doctor what my problems are and their respoce is He does nothing for you but prescribe narcoitc pain pills for you.

    He has offered to do any treatment that would help me. But I am allergic to steriods so the facet injections are out. Then I was told by one family member that knows I can't take steriods , she told me that she had just found the cure for me. Great what is it?

    I should have a steriod epidural , I can't I said , well why not? Can't stke steriods, But that is only from a shot , Well what do you think a epidural is?
    She still thinks it would work just fine and I would feel so much better.

    And then the is the question about pain. Pain is such a induvidal thing, what I persive as something that causes me pain does not even make you flinch. But when some thing is there that hurts you it really hurts. I have said to family that after you have had pain in your life for so long it gets put on overdrive and the smallest thing can cause me severe pain.

    And then I get but you take so many drugs that you should not feel a thing and if I took that much I would be in a coma, Yes you would. I didn't start out taking 100 mg's of MSContin. It just started out with a tyoenol #3 and then it has gone up as the pain increased.

    To my family I am addicted to my pain meds and there is NO way that I can prove to them that I am not so I have given up . Why fight it. It only makes me angry that they have no clue as to what they are talking about and they already know everything there is to know about all the condititions I have that have anything to do with pain. Except that they don't know anything about what is going on in side my body.

    I am not this lasy person who just wants to sit down all day long. I really would love to wander in the mall with my daughters but oh would I pay for it the next day. All my muscels would cramp up and twist in to the rock hardest knots you can find. The things taht most people do each day walk , climb, move , bend, reach, are all things that when I do them cause me PAIN!.

    I would just love it of one person I knew would ask me why do you really hurt like you do? And why is your pain so bad? I could tell them that my body has been short circeted and the message that is being sent that I am injured and keeps repeating over and over all the time.
    Or like a string of christmas lights you know the ones. Where you think that all the bulbs work and there are some that don't work no matter how many times you have changed the bulb. , that is because it is not the bulb that has the defect it is the wiring that is bad.

    So I guess that what i am trying to say is that my nervous system has gone haywire and it is sending the message that there is terriable pain all ways in my body.

    I want them to know that some where in my nervous system my nerves are sending a pain signal over and over again. When you tripp and break your wrist your in pain for a month or so and then it slowly goes back to normal, but for me the wiring is bad and the signal never stops sending this message to the brainthat I am in pain.

    But no one really wants to belive that , It is easyer to think that I just like to feel "OUT OF IT" and when I take my pain pills I get all stoned and can't function at all but I can function better when I take my pain pills then when I don't.

    I still wwant to know who it is that our families and friends know evrything that is wrong with us and most of the time it is we are just depressed and if we would get move sleep, see a counsler, and exercise more , eat better, we would be cured,. IF we did this we would feel some better and maybe lose some weight would ease the pain in my knees but not much. AS they are in need of a knee replacement. And losing wieght will not change that need.

    I know that you have some one that can tell you all about your "ILLNESS" and tell you every "CURE " there is. But the one thing that would help us the most would be for our family , friends,ect would just read, listen and learn and do some reseaarch they might understand that what we tell them is the truth. And they might learn something new. Wow that would be so great.

    But I don't think it is going to happen for me. My family all believes that I really have some back pain but it is not "THAT BAD" and if I would just eat right lose weight and exercise my knees would not hurt at all. And as for this fibro stuff it is all in my mind and it is not real. I am just looking for some attention so I have decided that vecause I am over wieght and don't feel so great, and I don't want to exercise , I am just faking it. AM I?

    I so want to hear some oen tell me taht they believe in what I am saying and that they accept me for who I am and not judge me becaue I am taking pain pills. I want to feel like I once did, but because of the chronic pain issues I will never be the same person I once was.

    So I would say to my family ,Please liston to what I am telling you, please research what I have said to you, listen to me. Believe in me. Just love me for me. Don't let this Pain issue and the pain pills I am taking make you believe that I am addicted to these drugs. Please believe in what I am saying , I am still the same person , there are just some things I have a hard time doing and some I can't do at all. Just love me for who I am. Accept me don't condem me because I am on pain meds.

    So to all out there who have families and friends who know it all. I believe in you. I accept you for the person you are.

  2. matthewson

    matthewson New Member

    That was a lovely post. I have been having a hard time with the people in my life understanding also lately. For the first 2 years, they were pretty good, but now, I am getting some flack, like they think after 2 years, I should be better now! I don't think they understand the term CHRONIC!

    My daughter always wants me to go out at night when her fiance is in town (they live an hour away from each other) and I finally told her that I couldn't commit to a date ahead of time, that I would have to see how I felt and these are nights that I have worked all day!

    I said, pick a day I am off, and I will be able to go. She still did not understand why I couldn't just go to dinner after a day at work. I finally told her, if you had the 'flu and all the aches and pains and headache and stuff that goes with it the first day of it when it is really bad, would you want to go out to dinner and make small talk with people and act like you feel good? Well, no, she said. That is what I feel like everyday.

    Some days worse than others, and I have NO energy left after a day of working, so I would have to FORCE myself to go out to dinner feeling awful, like that flu instance I just explained. I think she has finally got it. I just don't care anymore! I have to live in this body and I don't care what anyone wants me to do, I will do it if I can, and I won't if I can't!

    You have so much more going on than me with your degenerative discs and such. You must have excruciating pain. Rosemarie, you are going to have to lay the law down to your family like I did with my daughter and tell them that you are doing what is right for you and than you have to NOT get sucked into the guilt trips they will try to play on you!

    You have to detach yourself from anything and anyone who nags at you about these things, even if it is your family. They are doing you no good but nagging at you about your meds, etc. They are only succeeding in making you worse because of the stress.

    And I wouldn't talk to anyone about how you feel on a daily basis. If I complain to my husband about a particularly bad day, he says, but you have been really good! I said, listen, I HURT everyday! On the days I complain, I REALLY HURT more than usual. So, I have decided not to complain at all to him. BUT, I will not do what I can't do either. If I know it will cause me more pain, I won't do it.

    If I need to complain now, I call my mother, who understands this DD because she helped take care of me after my hysterectomy which triggered this and she KNOWS what kind of pain I had. She listens to me and doesn't try to tell me about the latest thing she heard to cure me. She seems to instinctually know that that is not what I want to hear. I guess because she is my mom, she knows me better than anyone else. I really don't know what I will do without her. I am crying as I type this, just thinking about it.

    Sorry to go on and on here! It helps to get these feelings out and also to get some advice on how to deal with them. I do a lot of reading on this board and not a whole lot of posting, but I get a lot of knowledge and insight from this board.

    Well, Rosemarie, I hope you feel better about things and I hope you can get the people in your life to be more compassionate toward you. But, if they won't, you may have to disassociate yourself somewhat from them, and shut them down if they start to offer you advice. Good luck to you.

  3. butterfly8

    butterfly8 New Member

    Dear rosemarie

    I believe you. I cannot do anything to help you - but I believe you.

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