Amazing the growth in ppl with this dd....from 2m to 6m

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by JaciBart, Jan 29, 2013.

  1. JaciBart

    JaciBart Member

    I acquired Fibro/CFS on May 19, 2002 and was lucky to receive a diagnosis rather quickly in August. I lived on this website it seems like many hours every day for 2 or 3 yrs. I was convinced I was going to figure it out. I just knew I would find the answer and the cure.

    What a classic case I was! I just could not believe with my abilities and accomplishments and talent and IQ that NO WAY could this happen to me! Not me! I could do anything and succeed at anything I ever set my mind to.

    In those days the numbers out there were approximately 2 million people diagnosed with Fibro. I just heard today that there are approximately 6 million people. Today, I am approximately 3 months shy of 11 years with Fibro and we have (probably more than) TRIPLED!!!!

    I had only been married 6 mo when I became ill (a trauma with my husband's pacemaker caused 24 hrs of adrenaline, adrenal storm caused autoimmune reaction, led to adrenaline being the enemy to my immune system....you all know the story) and I remember reading of so many women losing their husbands and I also thought "that will never happen to me" and turns out I learned pretty fast that my carreer was more attractive to him than I was as I lost that immediately and I earned plenty more than he did and suddenly I had no value. His father said within 2 wks of me becoming ill "....isn't there someone in her family she can go live off of now?". At first it was verbal & emotional abuse which I was convinced God was going to intervene and enter his heart and remind him of why he loved me or somehow fix everything. I lived in fear 24/7 of his anger & temper for 8 yrs, eventually, as everyone always warned me (including my Pastor, Counselors, former Gideon wives as we were active in the Gideons and he has this image of being a 'Good Christian Man' everyone who knew my big secret of how our life really was behind closed doors tried to tell me eventually he would assault me. It was just a matter of time. It always leads to physical violence. Again....That could never happen to me.

    Finally after the 2nd assault I moved out. I hibernated with my loving service dog for 2 yrs. Just sat & cried & wallowed in self pity for 2 yrs and loved on my dog.

    And in that time I have not figured out what causes Fibro, and at least 4 million more have joined my (and your) way of life. How incredibly sad.

    I have never learned how to live without self pity. Not a day goes by that I don't pray for God to take me.

    I envy those of you who can stay into life and smile and be positive. I have been in counseling this whole time and it has helped with a lot of issues but I am afraid I will never learn that.

    I wish we all had the strength to take to the streets across the US at the same time and show the world how many of us there are, all at once, in every city. Can you just imagine???? All of us tired, worn out hunched over, limping, 6 million. I never imagined it would come to this. I wonder if I will be here when it reaches 10 million and will they still just be shoving pills at us?

    Treatment would be a nice option, an actual treatment, I would stand in line for that.

    Hugs to you all,
    I am still learning from you all.

    Jaci
  2. confetti11

    confetti11 New Member

    Jaci, I feel almost exactly the same way you do. I haven't been on this board for years but for some reason tonight, I just decided to see what people are saying. I have a different problem. I started getting very sick 13 years ago. I threw tons of money into treatments and now function pretty consistently at 80% and work a lot. (And I had/have a severe case of CFS-homebound and unable to work for years on end, it was a slow climb out of hell-so I believe it is possible to get better.) But, it's not enough. All of those years of work gettting better and now I'm broke and if something doesn't turn around, bye bye treatments and hello hell again. I loathe when someone suggests I don't know how to cope. Excuse me, I've spent years in physical hell and I'm still here so yes, I do know how to cope. Maybe the problem actually is that I cope so well that other people don't know how bad this really is and therefore go on blatantly ignoring the severe needs of this population, placing blame on them or making them out to be crazy instead of physically ill....all are enormous problems in our society. Maybe, instead of not being positive enough, I've been too positive and didn't speak up enough. I hear you.
  3. Mikie

    Mikie Moderator

    For both of you. I suspect that depression is rampant among us. I don't usually experience it but after a series of setbacks, I am having a bit of it. I also suspect that depression may be a physical symptom of our illnesses. Everything else in our bodies is off balance; our brain chemicals are likely unbalanced too.

    I'm not a big fan of AD's but if traditional therapy doesn't help, AD's might be the answer. For me, though, it would be a last resort due to the potential side effects.

    My love and prayers go out to you and all others who suffer depression.

    Love, Mikie
  4. jaminhealth

    jaminhealth Well-Known Member

    and arthritis hit my body at 18, I'm 74....

    For me depression was there for 10 long struggling years from 1991 to 2002 give or take....it was untreated thyroid for me....I was on probably 3 diff A/D's in the 10 long years and it was a sluggish thyroid which I suspected.....

    Forget that "normal" dx from the docs...our bodies are not
    lab numbers....those labs are guidelines for today's medical industry, but prior to labs was was before 1976 or so, MD's worked with their patients when they came in with their long list of symptoms: depression, weakness, fatigue, cold/hot body parts, hair loss, weight gain....the list is about 69 some symptoms long.....so Thyroid for me was major, once I finally was given Armour by my good ole back D.O., no labs even done by him, the depression lifted in 4 days...oh how I remember that...

    Then in late 2006 I was having a lowness and found how Vit D deficient I was....the Vit D deficiency literature all made sense finally, I never dreamed I was Vit D deficient....but sure was....

    So for me getting thyroid optimal and Vit D levels optimal got rid of that clinical depression mess....

    There are ups and downs in life, but there is a chemistry depression. jam
  5. JaciBart

    JaciBart Member

    Thank you each for your input, there is so much wisdom here. I was on Armour for several yrs but docs finally refused to allow me to continue, told me they stopped making it, it sure does get a bad rap by mainstream Docs. I am on 2x normal amount of Cymbalta, have been since it came out, takes that much for my nerve pain and my PTSD.

    I am going to start the Vit D daily, need to read up on it, have only been doing it 1x a week. Thank you so much. I feel like I live in constant anxiety and fear.

    I am still battling after a yr & 3-4 mo parasites and serious systemic fungal infection, brought on after MRSA in scalp. Long story but I feel like a freak of nature. I finally shaved my head a few months ago to make it easier to deal with, got a beautiful wig but I just have never felt so ugly in my life. Hard to even look at myself.

    Hugs, & thank you so much.
    Jaci
  6. Marta608

    Marta608 Member

    I've had CFS/ME for 19 years. Before I was just like Jaci - great job, happily involved with my community, a great long-term relationship and many friends.

    Now I'm lucky to be able to get groceries once a week and whatever I do, I do alone. After ten years my SO decided that I was holding him back - and he was right, I was! Not intentionally, of course. One day he was there and the next day he was gone. That was seven years ago. I've tried to meet someone else, but I don't have the energy they want in a companion.

    The divorce from my husband was final 29 years ago. If anyone had told me I'd live alone the rest of my life, I wouldn't have believed them. It wasn't bad until I got sick; in fact, I had fun. But I miss that second pair of hands and that second brain. You know how it is. The depression creeps in eventually.

    The only blessing for me is that I've HAD to slow down and smell the roses. Now the birds, the trees, the flowers - even the snow - is beautiful. My cat is my mainstay instead of a man. She won't take out the trash but she's a great snuggler. :)

    Yesterday was a surprisingly good day (they do come, Jacki), but I'm paying for it today.

    Let's (gently) pat ourselves on the back. There are people who could not, would not, live as well as we do. I say we are all heroes in our small world which is growing bigger by the day. I salute you, my friends.

    Marta

  7. jaminhealth

    jaminhealth Well-Known Member

    no complications, no nothing from another person.

    I take my own trash out and hire out what has to be
    done...it's very simple....


    On the mainstream docs on thryoid meds, they are bought and sold by
    synthroid company....it's a thick story on that one when Syn came
    into the market place....when I went to conventional MD's, there
    were lines of drug reps and so often it was the syn samples....

    Read Stop The Thyroid Madness book....

    You'll never see a Syn rep sales person in an Integrative MD's office....[This Message was Edited on 01/31/2013]