a bit worried tonight

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Mar 17, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Do you ever wonder if you have (insert your name) syndrome?
    I do. And now my doctors are wondering it too.

    CFS, simple clear diagnosis back in 2002. Worked with some top docs. Important-type docs. Best we could find, dig up, buy or burry. And my dad got to meet with them again in my old town on a business trip the other day.

    And they're scared. Yeah, apparently, I should not be doing this badly, and we're missing something. Dad mentioned they said something about muscle biopsy and further testing.

    I'm gonna push all the worried thoughts out the other ear for tonight. But serriously, I can't help but tell you, I always wonder about myself. I wonder if we are missing something. I've had the whole FFC battery of testing done (and failed to improve on their program), and still, they feel there is a blank.

    I don't want to be sensationalist (I know there is that post recently about people making stuff up for attention, and I am NOT about that), but if I do turn out to have an illness that may shorten my life, you will all be here for me, right? And I'll stay here with you, promise.

    Sorry. Don't want to be a downer. Maybe I'll delete this post after a night of sleep blanks my memory for the next day. Probably there is nothing too badly wrong with me. Probably it's just CFS.

    A couple of hugs is all I need to feel better for now.
    ((love you all, always))
    [This Message was Edited on 03/18/2006]
  2. Cromwell

    Cromwell New Member

    I think you are scaring yourself. The problem is that when we have an illness that no one is really identifying as a definite, with a definite treatment, then our minds are left wide open with what ifs.

    I was a psychologist for many years and I can tell you this that over 70% of people walk into doctors' offices and the doctor cannot I>D> what is causing their symptoms. All they can do is "rule out" some of the more serious disorders and this is what they do. Hence, people like ourselves go through this whole battery of testing that ends up inconclusive.

    Now although that sounds scary, it really should be reassuring, as what they have done is rule out the killer diseases. Now this is not to say that somewhere in the future somethibng worse(I am not talking about pain here) can happen to us in the same way we get on a plane and hope to reach the destination, life is the same-soemthing can happen years ahead we cannot know about much.

    I do thi k that because all the ER shows etc show these dx'd and treated conditions that we are led to beleive this can happen for all people. Wrong, most of the people admitted to ER they also cannot say what is the matter with them, only do rule out tests.

    My own feeling is that many medications and foods can be the root cause of some immune triggered illnesses-yours seems to have started wiht mono and it could be you were then given meds that kept the mono lurkign about(EBV) and you may need to just eat well and healthily, drink lots of water, stay away from processed foods, colas or anything(though maybe you already do this) and try and get off any meds slowly s-l-o-w-l-y.

    When you are away from the home do you notice a difference? Could be there is mold or allergen that is triggering your symptoms too.

    Do you keep a log book of symptoms in columns where you can grade the numbers against stress level of the day? This can be useful.

    I bet there are very few of us on this board who have not had "insert the name" syndrome, we imagine the worse things and this is when we need to call upon the better angels of our nature to help us calm and try and accept what we can and reduce the sressors in our lives.

    I think it is fine to have the muscle biopsy BYW, I am having one soon, but again, to rule out fear, that great imposter that adds to our pains.

    Much love and we will always be here for you.

    Love Anne C
  3. Shannonsparkles

    Shannonsparkles New Member

    Guess the worst thing wrong with me at present is... worrying. I woke up the next morning, though, with a feeling of peace. With the memory that I am in charge of my treatment, and that I am not the helpless, confused and scared kid that I was when I started out treating this thing.

    Cromwell, you are right. Any of us could 'go' at any time. Having had someone close to me die when I was young has made me concious of that. I feel like the best part of my day is spent 'making my peace with God', so that, if something hard does happen to me, the best part of my spirit will live on forever. And He promises that whatever we suffer in this life, he will make us able to endure it.

    I have a springier spirit than I ever immagined I could have. I cry things out, write, read, draw... and I recover. I don't know how. But I feel like I will be okay.

    For the technical part of the problem, julehan is right. I do feel motivated to do further testing. I have no idea what a muscle biopsy is for, though. Cromwell, can you tell me what it is for? It's something we wanted to do when I first became bedridden four years ago, but we didn't have the money at the time or something (my memory of those years isn't clear).

    I remind myself that the doctors are working for me, and not the other way around, and that I can protect myself and advocate for myself. It took me back into those feelings of helplessness that I had in the beginning of this.
    ((xx)) Shannon

  4. mom4three

    mom4three New Member

    I have the fear that you have. I have followed all of the protocals i have been told to follow and yet I have all this pain with medication. Even after changing and altering medication we still have pain. I have numbness and tingling in my limbs.
    I did really well for about 8 years and I have just been getting worse and worse. I have done and changed everything that everybody has said. I think if I hear another person say it is all about diet or processed food or maybe you childhood and maybe if you get alittle more sleep I could scream lol.
    I have changed all of that.
    My point is I too am having the biopsy and you are not alone. I will be here for you:) I will send a an angel kiss up to the sky for you every night Shannon. This will all work out in the end:)

    [This Message was Edited on 03/19/2006]
  5. Cromwell

    Cromwell New Member

    Of muscle can show a doctor what may be operating incorrectly in the muscle, it is nothing to do with cancer BTW, they test for certain chemicals that I know not much about. Have it done, I think they can glean a lot of info from one. Don't scare yourself that biopsy and cancer are the same thing, as they biopsy all the time for all sorts of diseases, most of them totally curable or not likely to kill you.

    Love Anne C
  6. alaska3355

    alaska3355 New Member

    I'll be praying that there is nothing majorly wrong with you...and that you recover from what you already have! Love, Terri p.s. Play some happy tunes on that recorder!
  7. hugs4evry1

    hugs4evry1 New Member

    I really liked Cromwell's response and couldn't have done better myself.

    I do understand wondering if something else is wrong with us though....Back in the fall when I was laying in bed wondering if I was dying or if I'd die and THEN they'd find out what was wrong with me.

    It was my thyroid by the way...I'm just glad I insisted that it wasn't the FM causing the symptoms although they are almost identical.

    I sometimes wonder how long it will take the docs to realize that this is progressive, that we do end up with a list of illnesses and that science needs to find us some help soon.

    You hang in there hon!!!


    Nancy B.