OK..........Uncle

Discussion in 'Fibromyalgia Main Forum' started by Kathleen12, May 30, 2006.

  1. Kathleen12

    Kathleen12 New Member

    I just got back from seeing my GP hoping he would refer me to someone who would test my heart (I read about the mitochondria and how it relates to undiagnosed heart problems) and he told me that there is no reason to go into further testing because I have not presented with pain or shortness of breath. He said that I do have CFS and that I should be happy that's all I have! I am happy that I do not have anything fatal, but I am still undr the belief that something has been missed in all these blood and neurologic tests. I want something that can be treated!
    So now I am ready to say Uncle and let it go after my GP, Rhuemy, and nerologist all say CFS. But I don't WANT to give up! At what point should I stop searching for a true diagnosis? Sometimes I would RATHER drop from a heart attack than have to live like this!
    Sorry for the rant, but I am just so disapointed and in tears over this. When did you all give up?
  2. NanceZ

    NanceZ New Member

    I hope you don't give up. I know the desire to want to but it would only hurt us to do so.

    I've found that accepting this as my life.......a life, different than others and not what I wanted but life just the same.

    My prayer and hope is that I just slowly climb to being better and stronger and maybe over time i will have more of a life..............it seems to be happening that way for me........but believ eyou me it's slow and not to steady.

    I worked hard to get to acceptance..even before the next thing happenned:

    In between all of this CFS mess over the last 3+ years. ........i found three growths in my left lung two days before christmas '05...

    For three weeks and 4 docs........ all thougt it was cancer.....even after the doc went in with a scope and looked and biopsied... and when it turned out not to be.....

    I realized that living this way was better than dying.

    I looked death in the face, wrote out my will and all that goes along with that.....prepared journal page after journal page to my kids (Single mother I am) and was in the business of preparing for death so i might be able to live the remaining days the best I could.

    When the diagnosis came back...... that it is some vague and as of yet un-named lung disease (yes a another frustrating unnamed uncurable thing arghhhhh) I didn't know what to think. I was so prepared to be dying it took days to unwind and accept the good news. Weird :)

    Anyway.......please don't give up. make the best of it that you can and take the best care of yourself that you can. I think we need to grieve what it is we have lost and have our moments of self pity... and then carry on. At least that's what I try to do.....not always that successful but I keep trying.

    Come November i'm going to celebrate turning 50 even if if I have to crawl to the celebration....because i am alive!

    I got to rambling........sorry.


    [This Message was Edited on 05/30/2006]
  3. victoria

    victoria New Member

    What about finding a doctor who takes stealth pathogens seriously, and get tested for things such as lyme, mycoplasma, bartonella, and other 'most common' stealth infections... it seems like every week one or more here find out they have an actual infection.

    You may want to start with a LLMD since it seems to be them who take our symptoms seriously and will do testing for most if not all of these things... my son came up positive for Lyme, but was also tested for mycoplasma, babeosis, bartonella, several other things...

    The other tests came up negative but because he has only had some remittance of symptoms so far, they are giving a trial of meds for other infections, so far babeosis and bartonella, even tho the tests are 'negative' --

    The reason is of course is that no test is 100% accurate, treatment is supposed to be based on the clinical picture, and a trial treatment is entirely in line when one has the symptoms.

    Just a suggestion, hope this helps. If you decide to do this, you might want to go to flash.lymenet.org for a 'good doctor' referral...

    all the best,
    Victoria

  4. mme_curie68

    mme_curie68 New Member

    Don't give up, but part of living with these diseases means you have to come to some kind of acceptance.

    Acceptance is the hardest part - I fought it for a long time. I wanted something I put put a name to, something that was tangible that could be treated with a medicine and cured.

    I see my life right now as "before FM" and "after FM". It changed everything about me. I wish there was some way to get all the way back to "before FM" but it is not to be, at least right now.

    Accepting this disease has at least been able to get me moving in a forward direction - treating the symptoms for now, until I can treat the disease. My doctor told me that some people can spontaneously remit, some stay the same, some get worse and eventually do develop something "measurable" like RA or MS.

    I have some of my life back now. I sure have to plan a lot more carefully and if I forget that, I do pay a price.

    You're definitely not alone here.

    Hugs,
    Madame Curie