I Have Been Through Alot

Discussion in 'Fibromyalgia Main Forum' started by NyroFan, Jul 3, 2006.

  1. NyroFan

    NyroFan New Member

    Hello all:

    Can't we all say that? Look what we put with. I know there are many illnesses with their own problems and such, but I believe we are not well heard in the medical community and we have to patch our health care piece meal. Who do I go for this? Who do I go for that? Etc.

    When you think about it: what the he** have we all been through. It has been terrible for me on this road.

    Anyone have an easy time of it?

    nyrofan
  2. blessedmom2four

    blessedmom2four New Member

    what a nightmare to get a diagnosis...then people read that with diet and excersice people got better so they think if i just do that i will magically be better...


    i believe i can help myself get better but i see it taking alot of time....months maybe years...

    everyone seems to have diffrent triggers and trying to figure out mine will take some time
  3. kellyann

    kellyann New Member

    It seems to take forever for a DX of any kind, even if it is a wrong one. Some where along the way doctors seem to have forgotten that we are real human beings that do have feelings and that have real brains too. I bet most of us have been to countless doctors for this and for that, I know I have. Seems like no one doctor knew the answers.


    How are you doing now nyrofan? I am sending prayers up for you that you find the care and comfort you deserve!

    Kellyann
  4. NyroFan

    NyroFan New Member

    People think we get diagnosed easily and treatment is available. Who can say it did not happen to them? Eh?

    nyrofan
  5. NyroFan

    NyroFan New Member

    Yes, I understand:

    Sure, I am sick of it. I have one doctor who scoffs when I mention I have FM. Yet, I go to the FM doc and he validifies it.

    AAAAAAAAAAaaaaaaaaaaaaaaaaaaaaaaaaaa!!!!!!!


    nyrofan
  6. NyroFan

    NyroFan New Member

    KellyAnn--

    Yes, finally when I was told over and over by a doctor what was wrong with me I finally accepted it. I knew nothing of Fibromyalgia/CFS. Finally a doctor who would not only name it, but also treat it. A wonderful day if you can call this that. At least I knew.

    I now know that you know.

    much love,
    nyrofan
  7. 69mach1

    69mach1 New Member

    i know what you mean...my new pcp doctor just said i am so sorry that i do not have a special medication to help you with your pain...

    try to work w/them and go inot the chronic pain class step three. that is for the really messed up ones...


    he put em on a new anti-depressant...been on it before..he contacted my nut dr...he said i do not think she will respond very well to the welbutrin....

    it is givng me headaches...

    i feell like throwing in the towel....and jsut tell everyone that i am doing the best i can do until you find the cure...

    jodie
  8. jenni4736

    jenni4736 New Member

    It is a tough road. And yes..you can say it...here. We can do that because we understand the frustration of waiting, the confusion of tests, DX's, waiting, and emotional torture.

    Others don't understand ...but we do. It is hard for those we love to understand. They get to watch at a "safe" distance. They don't always feel it so that can't get it.

    Our healthcare is a jigsaw puzzle. It has thousands of pieces that we as patients have learned to decipher and DX. It is sad that we are required to do this, but it is the reality of the unknowns of this disease. It takes years of tests and doctors, and research to find a way to get all of the pieces to fit together to get a whole picture.

    We face obsticles of ill-informed medical professionals and under funded research.

    Yet we move on...life continues...and still I rise. Tomorrow is a new day with new challenges and still I rise. This disease will not take the best of who I am...I will not allow it.

    Jenni
  9. kellyann

    kellyann New Member

    I know I have seen my share of doctors. I saw countless doctors for over eight years.I wish I never had to see another,haha! The last doctor I have seen was at a FFC. She DX me with a long list.FM and CFS. Plus hormone imbalances, 4 viruses, T3 was still not being converted from T4 - hypothyroid, Cortisol almost nonexistant,shoot can't even remember what all right now, and the big beastie of them all Lyme disease. So, I guess I got slammed with quite a few DX at one time. Well they ought to find out what ails a person for what they charge at those clinics, haha!

    I hope you are feeling well tonight! I am so achey and sore. I think I'll go on to bed. Maybe read a book, I just got the newest Dean Koontz book! He is one of my favorites.

    Take Care!
    Kellyann
  10. ANNXYZ

    ANNXYZ New Member

    pretty early as my symptoms were classic CFIDS . However , I do have lyme ( i find out after ten years ) . To be honest, I doubt I will ever be normal even if I got rid of the lyme .

    The truth about CFIDS/ FM is that there is NO TREATMENT
    in existence that doctors have to work reliably as a protocol. That is why chronic illness is so hard to take.
    There is no real fix and no end to the suffering .
  11. JLH

    JLH New Member

    Nyrofan, I would certainly have to agree with you that I, too, have been through a lot.

    My doctors have listened to me, and treat me, try anything that I suggest, etc., it's just that nothing helps me that much!!!

    To the doctor's credit, they have probably helped the fibro all they can, and the lupus and arthritis all they can for the stage that it's in, it's just that they can not help me get out of the pain that this pinched nerve in my back is causing me. This pain is ruining my life! It is horrific and I can not do a thing for it.

    I'm certainly not having an easy road with my medical problems, but I don't think I can blame the medical community right now. They have done what they can to relieve me from pain--I guess they can't be miracle workers.

    Janet
  12. Elisi

    Elisi New Member

    Hi, nyrofan. I have been suffering with CFS/FM for 14 years and have had several relapses. The pain is there 24/7. You can't let it pull you down, you have to stay positive and thank your lucky stars that this disease is not fatal. I have a wonderful Doctor who is understanding and caring. She inspires me and does all she can to help me medically. At first, my family and friends didn't understand what I was going through and neither did I until I started reading about it and talking to others with it. I also participated at a Chronic Fatique Research center as a study patient and learned more from that experience. Look at all the good things in your life and continue to do whatever you can. Don't let the disease take over. Many times my activities cause me more pain and exhaustion so I pay for it the next day or two and try to restf then. I will never give up enjoying my family and friends and I hope you will do the same. Take care and hope to hear from you soon. Remember, you are not alone and SUPPORT is KEY!!!!! Elisi
  13. NyroFan

    NyroFan New Member

    Wamps:

    I have never asked anyone to do a profile. Mine can be found by viewing my posts in a search. It certainly says so much about me. I never even look at profiles. All info on me is more complete in posts.

    And all: isn't it all true--so glad to hear from you that you too 'have been through alot'. That is not to say we do not have hope or try to get better. Bless us all.

    nyrofan