Discussion in 'Fibromyalgia Main Forum' started by kalaya, Oct 27, 2005.

  1. kalaya

    kalaya New Member

    Thanks for the little message the other day,I did not want to reply directly to your post not knowing if you were going to have another peak at it or not.Good to hear that things are slowly but surely going in the correct direction for you and this can be a long road back to wholeness but one well worth enduring.
    One thing I do want to ask you and for no other reason than mere curiosity is when you were origonaly afflicted with the cfids what was it that truely grabbed your attention that something was wrong beyond a normal run of the mill a little dab L do ya flu?
    For me I remember for half a month having bone crushing wealness but this never startled me or thrust me into a panic thinking something was horribly wrong.I was always certain that inspite of todays very abnormal fatigue that tomorrow I would be ressurected and fully myself again.
    What made me wonder what the heck is happening here is the neurological breakdown that was occuring,this was and still can be the most disturbing element of the illness.People like to label it brain fog but this trivialises it to much for me so I always will refer to it as neurological impairment.
    I was certain that I had a brain tumor but MRI's proved my self diagnosis to be incorrect,but there is always that funky dualism between the true mechanisms for our plight and the off the hip diagnoses.One of my saving graces is my uncle who is a doctor.He graduated #1 in his class from Stanfords medical school and is one of the leading experts in the U.S. regarding medication so I have always had his brain to pick whenever I can use a ultra knowledgable voice on many of the meds that are used or touted with great potential for aiding cfids.He unfortunately also suffers from cfids/fibro so has used or tried many of the meds himself.Medicaly he is the differance between a true artist and merely skilled profesionals,he is without exageration this gifted as a physician.A softer touch yet greater power.If you ever are in need of some expert advice on a certain medication perhaps I could intercede on your behalf and see if he would have the answer you were looking for.
    Oh yes I got side tracked there for a bit,I do want to ask you what did you go through neurologicaly when the illness struck?You did not elaborate but it sounded as if there was a battle with coordinating what was once an unconscious act.Not fun is it.Anyway time to go study the piano now and keep my brain in motion so I will wish you a blessed day,and quality and quantity rest.God bless.
  2. elsa

    elsa New Member

    You are right that the pain and fatigue didn't send me running for the emergency room. It had my attention, but I attributed it to aging-athlete problems although I wasn't that old.

    Multi-years of wear and tear plus injuries makes someone hurt day in and day out right? That was my mind set.

    It was when I recognized a subtle adjustment was needed to make a jump flawless ... and DIDN'T DO IT ... that had me scared. At worst, (and very, very rarely) I wouldn't even recognize the need for the adjustments.

    My "scared" was not your type "scared". I truly thought I had lost the God-given talent ...the feel for the seemless ride that was such a part of my riding from the beginning.

    These moments of average amateur ability didn't happen everyday or even every week. But enough times that I remember sitting in the tack room in Florida during the winter shows tell my friends, trainer, and former clients that I just wasn't as sharp or as talented as I used to be.

    I pushed it for 1 more year ... then the lack of sleep, pain and "vacant" moments got to be more then I could handle. I had qualified for the indoor shows and crawled in my husband lap crying ... saying I want to stay home and that I couldn't do it.

    I'd say that was that, LOL. I just have been so fortunate in the doctors looking after me. I never had to wait for diagnosis and as soon as the blood work came back my PCP started me on anti-viral treatment. A little over two years ago and here I am ... early remission. I'd bet the farm that after I complete my last treatment phase that I will be in full remission.

    I'm not pollyanna in this. I realize that I will be "maintaining" aspects of this illness forever. If the "flu" feeling comes back I'll jump on the anti-viral treatment asap, etc.

    I know all things happen in God's time and for a reason. I also know I don't have much of a leg to stand on when whinning about the length of time treatment has taken. (A little over two years is not that long compared to other individual's horror stories.)Still, I can get so mad at some of the "duh" irregularities I have and that are treatable.

    I'm ranting about two of my hormone numbers that related directly to athletic performance and wellness. My testosterone was pathetically low. My doctor said any kind of work out routine "would have been useless". My Growth Hormone numbers were almost as bad.

    From an athlete's point of view ... no wonder I couldn't pull it off. I did not have the ingredients to make muscle nor did I have the stuff needed to repair muscle, tendon or ligament damage.

    If non-athletes incure fibro caused damaged muscle and soft tissue fibers that are detected easily through biopsy, what do you suppose athletes (still trying to push through) incure in amount of torn, nonrepaired tissue?

    How easy was it for my integrated doctor to test the entire HPA axis endocrine system ... testosterone and GH included ... and start me on a protocol of self injections for both of them? Pretty friggin easy. Yet it didn't "happen" until just recently.

    I am blessed ... good doctors, treatable situations and extremely supportive husband / family. Typical of me, now that the big picture has been figured out and remission insight, I wanted it to happen yesterday!

    I hope you are doing well. I certainly unloaded on you with this topic didn't I? You posed questions that I haven't stopped to think about. I thank you .. it has been interesting.

    I don't think the best is behind me. I am a different person after CFS/FM. I still want to dominate my division ... but not day in day out ... week after week. I want to dominate at the times I choose to show up. Ha! How arrogant is that?! I want to be the top of my game, but my life has to include more then just that game now. Hard to explain.

    I loved hearing you describe your uncle, his talents and his obvious place of importance in your life. Thank you greatly for the offer of possible research information from him. I will file it away for future reference.

    Thank you again for the interest and for posing questions well worth me looking inward for answers.

    Take care,


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