Just Diagnosed and So Scared

Discussion in 'Fibromyalgia Main Forum' started by thisonecoolgirl, Sep 15, 2009.

  1. thisonecoolgirl

    thisonecoolgirl New Member

    I was diagnosed with CFS last week. At first it didn't really phase me - I've been tired for so long, it just made sense. But now that I can't just sit in denial...well, I'm scared. I am a person who is known to be the "glue", the one who holds everything together...and I can barely hold my head up. I feel like a burden, and a disappointment, and so very very useless. I have faced so many challenges in the past two years - overcome addiction, the death of my best friend, huge changes in every part of my life - and now I am so disheartened. I feel like I worked so hard to arrive...here. I hate feeling sorry for myself, and I'm hating myself for even typing this, but I am out of hope right now. Without my energy, who am I? What is my value? What in the world is the point of...me?

    I applaud everyone out there who bravely faces this DD...I can't seem to find my fight.
  2. Maribelle

    Maribelle New Member

    I can so relate to the denial part of this DD. I have FM and I tend to live split because of the
    denial. I try to will myself to overcome this illness. I white knuckle it until I have to claim
    defeat...then I turn it over to God, Dr's, meds..etc.

    Somedays I think that it is all in my head and if I could just change how and why I think the way I do, it would all go away.....how sad...but I do understand what you are going thru.

    I lost my mother, my job, financial stability, health and on and on....I have been grieving
    for over 4 years. It is definitely getting better! Depression is also a part of this illness.
    But we must not stay in it or let it take over. I pray and also take Cymbalta 60 mg...this works for me.

    I too have always been the glue for my family and friends. Now I have to say no and I can't so much of the time that it upsets me. I love helping people and now I am very limited.

    I am learning to re-invent myself by doing things that don't require too much exertion i.e.,
    computer graphics & online marketing. I own a boutique and I do most of it from my home.
    My daughter runs the store and the employees. Teamwork, that helps!

    Stay coming to this board, it has literally given me soooo much hope, inspiration and knowledge on how to fight this battle. You are not alone!

    I am glad you came on the board tonight and I encourage you to stay connected.

    God Bless,
  3. thisonecoolgirl

    thisonecoolgirl New Member

    I so appreciate your response. I have been crying all day (when no one is around, because I just cannot let anyone know I'm upset) and this is the first real relief I've felt.

    My mom - my best friend - passed away a year and half ago, after a year of harrowing illness. I held it "all together" - part of me wonders if that's why it's all falling apart now.

    I quit abusing alcohol about a year ago - part of me wonders if actually DEALING with my life has proven to be a bit much for me.

    And then part of me wonders if God is trying to tell me something - something I've just been too stubborn to get?

    It's just so hard to accept - which is where my Serenity prayer comes in :)


  4. AuntTammie

    AuntTammie New Member

    I'm too tired and sick rt now to really reply, but I just wanted to tell you that you are welcome here and that I can totally relate to your statement "I feel like I worked so hard to arrive...here".
  5. gb66

    gb66 Well-Known Member

    Welcome to the board and I'm so sorry you are going through this. One of the things you said that struck a chord with me is about overcoming an addiction. I had a physical dependence on a tranquilizer that was being prescribed in doses that were much to large, by a doctor that obviously didn't know what he was doing. After several years of having the dosage increased by him, I was feeling like a zombie, very depressed one minute and anger the next.

    My family didn't know what was wrong with me and I didn't even realize how out of control everything was. Finally, I put myself in the hospital (against my doctor's wishes) and went through a severe withdrawal. I started having all the symptoms of fibromyalgia and CFS while I was there but thought it was due to withdrawal and would subside. It didn't.

    This was the beginning of my battle with these two diseases and no one has been able to tell me what the withdrawal had to do with the onset of them. Regardless of how we got sick, we are all in this together now and being a part of this message board has helped me so much. They really understand on here.

    I was so disappointed too because like you, I finally felt I had gotten my life together and I went through so much to get there, as I know you did. You say that we bravely face our disease and you can't find your fight, but the truth is that you have found it - that's why you're here.

    You're very brave to have been through all that you have and still be here. What you're feeling is not self pity, it's just sadness over the disappointment and a little fear of the future. I know you'll make it, and I'll be praying for you. Hugs. GB66
    [This Message was Edited on 09/20/2009]
  6. loto

    loto Member

    I was diagnosed with FM a little over a year ago.
    I knew something wasn't right with me, but i never dreamed it would be this chronic, frustrating condition. I have been healthy my whole life, I'm only 40 now.
    All my problems started probably 2 years before my FM DX. Had to have back surgery because of a severly ruptured disc. Since then it's been one thing after another. It's still strange to me that this has all occurred since the back problem.
    I'm still in the process of trying to find out if FM is the only cause for my problems, or is a secondary condition because of something else.
    I do have good days, when I don't let it all get me down, but when I have bad days, they are really bad, and I get so low. Any little things sets me off and I just go hide somewhere and cry. I don't want anyone to know that I am low and depressed and don't feel worth a crap. I try to stay strong and positive, and try telling myself that this won't get a hold of me and keep me down. It's so hard to stay that way.
    Please don't lose hope, and please find your fight. It's in you somewhere, it's just hard to find it some days.
    You are very valuable, and were put on this Earth for some reason.
    Please stay on the board and visit it often. It has helped me tremendously, and I'm very fortunate to have found it.

    Best wishes, and many prayers for you,

    keep in touch
  7. Janalynn

    Janalynn New Member

    I have Fibro. I remember the day I was diagnosed. Although I suspect I've had Fibro for many many years, once I was actually diagnosed my world changed dramatically. Funny how the words change things. I was relieved on one hand because I had an answer, totally bummed out on the other.
    I am and have always been the glue - the "go to" girl. I still am when I can and have found that it gives me purpose and makes me feel good when I am able.

    Your energy has not/does not define who you are or what your value is. There is much more to you. It's what inside of you that defines who you are. Your heart, soul, mind, the love you have. You've been tired for so long, this really isn't new to you, just the diagnosis.
    You will face this challenge as you have every other one you have in your life.

    You will go through all of the stages of grief that a person does. You will probably go through them several times. Perfectly normal. It's also normal to feel exactly the way you do. Don't be hard on yourself. You need time to absorb all of this.

    You'll learn how to make adjustments in your life. It takes time, especially for those who are used to doing it all. You are far from useless. Guilt is a huge emotion that we feel and the biggest to let go of. It's a a tough one. You'll find we all struggle with that.

    Eliminate as much stress as possible from your life. YOU have to take care of YOU! We're often the last person we usually put first. Soon you'll realize that you have to.

    STAY connected as mentioned above. It's okay to feel sorry for yourself, cause frankly it sucks to have any illness. Don't wallow too long, but right now feel what you have to feel.

    Post, read posts, have a good Dr., good support system.

    Again, welcome!
  8. mbofov

    mbofov Active Member

    First, CFS is not a death sentence, but give yourself some time to just absorb the notion, and then you will be ready to fight.

    Don't hate yourself for how you feel. It's normal! But you will come to learn that you're not useless and you will find your value in different ways.

    You're going to have to become a first-class researcher as you'll find that most doctors don't have a clue as to what to do. This board can be a great source of information.

    One thing I would have checked right away is your adrenal glands. With all the stress you've been through, it's very likely that your adrenals are quite weak and could be a large part of your fatigue. You may have to find a naturopathic doctor to do this. Most regular docs don't seem to think about the adrenal glands, but it was huge for me. A very good chiropractor who does muscle testing diagnosed my weak adrenals and gave me an adrenal glandular supplement which helped a lot (after many visits to my regular doctor who never even mentioned adrenal glands).

    This is probably more than you want to hear right now.

    Just take it easy on yourself, give yourself some time, and you will find your fight.

    Take care -

  9. thisonecoolgirl

    thisonecoolgirl New Member

    Thank you all, so much. I know the energy it takes to write a post - I so appreciate you spending that precious on me :)

    I am stronger today. I've conquered bigger things. This is just an adjustment - and a wake up call that maybe I need to find my self-worth in something other than what I can do for other people.

    Love and hope and positive thoughts to you all.

  10. FibroFay

    FibroFay New Member

    Just wanted to say that everything you are feeling is normal. I can tell by your post that you are a "survivor". You will learn to cope with your illness. I'd suggest you'd read any books you can get your hands on about how to live with a chronic illness. That helped me a lot.

    You may want to check out some of the other boards here. Depression board and chitchat boards are interesting, plus others. Post whenever and wherever it feels right to you. Just join right in and get to feel at home.

    It's good to meet you.

  11. sascha

    sascha Member

    at the beginning of journey of learning to cope. don't be surprised at huge reactions as you come to grips with your situation.

    i've had cfids for nine years. to tell you the truth- i'm happy and stronger in spirit nowadays than i was pre-cfids. yes, there are tough times, but we can and will find ways to maintain.

    i am constantly working on my health regimen. will never quit. i think i am making progress, but i may never come out of this debilitating illness completely. you make adjustments and carry on.

    a lot of research is being done and big answers may come to light. for me, i've found i love painting, so i attend art class as much as i can, and paint at home when i can. maybe i can't do a lot, but i've found something i love to do.

    you really never know what you may discover for yourself that helps; and about yourself, too- sometimes major revelations may occur, and i mean good ones! maybe you will find strengths you never knew you possessed. honestly- so much remains possible for you in forging a good life. be patient- give it time.

    support groups can help A LOT. from what you wrote, you sound like a pro-active person- right now you are thunderstruck by the news and its implications- but i assure you there IS life after cfids.

    i will look for your posts- don't despair!! i sure wish you v.v.v.v well. best, Sascha
  12. momof471

    momof471 New Member

    I used to be the strong one, I had all the answers and could fix everything, well, when fibro came along, I could not just fix it and make it go away. I began having major problems in 2004 so I've been at this for over 5 years now. It got worse before it got better. This just can't be 'fixed', but there are things you can do to help it and you do have to learn to live within your boundaries and that takes trial and error.

    Sometimes I still get mad, I'm really frustrated right now because there is a lot I want to do and I am in a flare and my body is not letting me do things. I feel like I am letting whole family down.But, YOU are not what you do and you are not your energy...YOU are whats inside of your body and that can't change unless you let it. You, do have value and do not ever think otherwise. Its normal to mourn life as you knew it, but when you've done that, please realize that you are still a wonderful person and that you matter and are valuable as you are.

    God Bless
  13. AllWXRider

    AllWXRider New Member


    Pages 9-11 has a list of symptoms.

    Also, get yourself tested for toxic metals, mercury from dental amalgams?

    There is a Lyme forum too.