Discussion in 'Fibromyalgia Main Forum' started by Amslave, Oct 16, 2006.

  1. Amslave

    Amslave New Member

    Hi Everone,

    I was reading a post and thinking about how long it took me to get a dia. of any kind. In fact I didn't get one at all untill I finally stood up for myself and became an active member of my health care team.

    I know that everyone here has taken that step, we were all told that it was depression and we were treated like addices (sp?). I went 11 years being handed scrips for vicodin and told to get off my feet. Why the only reason I know that stenois is present in my back is that I read my MRI results!

    The worst part of all to stuggle for so long to find out what is being told by my attorney that my appeal for SSD is going to be based on my back diseasea not my fibro!

    If I was wealthy I would fight to make SS recognize Fibro as a disabling chronic disease. We all started out just wanting to know what was wrong with us...wanted our condition to be Dx's. And there are still judges out there who don't believe us!

    They don't seem to think how hard it is to give up so much of who you are, in these little chunks, every day.

    Sorry for rambaling everyone, still worked up about attorney...and thinking how hard it was to even find out what is wrong with me (I kniw I not alone in that).

  2. victoria

    victoria New Member

    It seems like most of us have to come to our own aid eventually. Sad, because the medical profession has worked hard to give us the idea that we can leave it all up to them.

    But if it is something not easily diagnosable, they do one or more of the following: write us off as 'psychosomatic hypochondriac etc", refer us to somebody else to get rid of us, or, probably the most honest, is to say 'I don't know' but which still leaves us hanging.

    The doctors don't seem for the most part to be reading the literature, just listening to the drug company reps, imho!

    all the best,

  3. Redwillow

    Redwillow New Member

    Hi Jen

    I was reading someones post about finally getting a diagnosis and how long it took. I was just thinking about how many years it took me.

    The funny thing was after I finally got my diagnosis and was able to tell people SEE I really have been sick with something all these years, I got extremely angry!

    I felt consumed with anger over all the wasted years knowing I was sick and feeling that nobody was listening.

    Also I was angry about all the years I pushed and pushed myself probably making myself even sicker because I was trying to please other people around me who thought I was lazy or needed to be yelled at to motivate me!

    I ended up going to a therapist for a while to help me deal with all these feelings!

    Then I went through the process of filing for disability here in Canada and again I was so angry at the stupidity of the system that makes people who are so ill prove over and over again that they are ill just so they can get financial help!

    I think my anger was probably what kept me going so maybe it was a good thing in a way.

    I am glad you posted here Jen. We need some place that we can vent how we feel and know that at least here people do understand!

    hugs Redwillow

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