Do You Ever Get Confused About What is Really Wrong and Doubt ?

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jun 5, 2008.

  1. greatgran

    greatgran Member

    Oh, so often I doubt my Dx and what in the heck is really wrong with me.

    Seems we are all so different, what works for one doesn't the other. With me I feel different from day to day. One day maybe good, next day I think I am dying etc.

    Then if this is an illness why all the anxiety /depression ?

    No wonder others don't understand when I can't seem to grasp it myself.

    There are days I can accept this weirdness better than others, then some doctors believe others don't , the ones that do aren't sure what to do and on and on.

    Just venting I guess so discouraged and confused.

  2. msbsgblue

    msbsgblue Member

    I think we all feel this way. There are days that I wonder if there isn't something much worse going on with me.

    I also wonder if no matter what symptoms I go to the doctor with he is just going to strike it off to FM and arthritis. So, if something else was wrong would they even check or just assume it is this dd?

    As to depression and anxiety I think that is a result and not a symptom.

    Just my opinion.

  3. CockatooMom

    CockatooMom New Member

    Hi Greatgran,

    I wonder about where my pain is coming from. I know I have the fibro pain and fatigue, but my back is flaring right now so badly that I am miserable. I don't know if I should go to the chiropractor or my medical doc.

    I have arthritis in both knees & bursitis in both hips. Was dx'd with a herniated disc in 1999, then later was told it was gone...
    but I am in SUCH PAIN! So, is it fibro or something else?

    I haven't even discussed many of my other symptoms with my doc. I'd have to just camp out at the office!

    How am I going to work as a nurse in this shape? It wasn't this bad when I started school in 2004, but now I have a handicap tag to use when I can't walk.

    I agree that depression & anxiety is a result of this DD.
    Sorry for the vent...but, thanks for reading this.

    Gentle Hugz,
    [This Message was Edited on 06/05/2008]
  4. TXPeach

    TXPeach New Member

    Yes, I feel exactly the same way. I keep wondering if all of this is the FM or is there somethig else drs are missing.

    I get so scared sometimes especially now since I have been dealing with vertigo for what seems like an eternity.

    All of the crazy symptoms make me wonder....and the anxiety and depression is just one more thing to deal with. For me, I think the anxiety is a result of my worrying that there is something else wrong.

    It really helps to come here to discuss what is bothering me and to talk to others who know what I am going through.

    I hope you feel better soon, Greatgran. We are all in this together!

    God bless,
  5. sisland

    sisland New Member

    Yes,,,it's so frustrating!!,,,Some days i feel like every fiber of my being is in so much pain that i can hardly stand it!,,,,,Just like the rest of us!,,,,,,and then the next day everything will be alot better!,,,,Why!,,,,,We just have to keep on searching!,,,,,,,,Hugs!!.,,,,,Sis
  6. gapsych

    gapsych New Member

    Hi, I know how you feel and it can be so frustrating.

    I guess it is "the nature of the beast" that our DD's cycle, whether FM, CFS or both.

    It is hard to explain to people why one day you can do something and other's not.

    I also believe the frustration, anxiety, depression are caused by our disease.

    What I did find helpful was to find a therapist who works with people who have chronic illnesses. She is also my psychiatrist PA. She has an understanding not only of the physical but also how this DD affects us emotionally. It was really helpful and she REALLY GOT IT!!

    Her coping stategies really helped. I sometimes go back for a tune up.

    Fortunately, we were a match. Sometimes that is hard to find.

    Hope this helps.

    Gentle hugs,

  7. MsE

    MsE New Member

    You know I understand, my friend. Sometimes I think the self-doubt is the most miserable part of this dd. That and the inability to plan anything 'cause I never know from day to day how I'll feel. How can we help but get depressed? Hugs, MsE
  8. greatgran

    greatgran Member

    Thanks to each of you for your replies and input.

    It helps to know others feel the same. Such a discouraging disease or whatever it is we have.

    I, too feel doctors say it is just fibro /cfs when it could be something they might overlook. If I ever feel like going to the doc I am going to ask for more test. May not get them but doesn't hurt to ask.

    Oh,how this messes with my mind.

    God Bless each of you,
  9. woofmom

    woofmom New Member

    If you want to start to have a better understanding of what's going on concerning arthritis and Fm you should start researching mucopolysaccharides.
  10. sweetbeatlvr

    sweetbeatlvr New Member

    WHAT is exactly wrong with me, but i never doubt that there IS something wrong with me.

    i believe that's just because *nobody* is sure exactly what causes FM or how to cure it.

    when i first developed FM (almost exactly a year ago), i definately questioned myself, and if i was really sick. was i manifesting it all in my mind?

    that caused me to have alot anxiety and depression.

    but the longer i was sick, feeling bad every single day, and the wide variety of symptoms... i knew that i couldn't be making this up.

    i think when i learned to accept that i was sick, is when my anxiety and crying spells ended.

    i was also able to be more direct, and not afraid to ask for what i needed, when i went to doctors for help too.

    i'm reading a very good book right now, "Living with Fibromyalgia - 4 Steps to Manage Pain and Live a Fulfilling Life". by Dean L. Mondell, MD and Patti Wright.

    In in, it explains how with chronic illnesses, we need to go throught the 5 steps of the grieving process, to be able to move on and learn how to live with the illness better.

    i know it's hard, but i really do believe we need to accept that we DO have a chronic illness, and it's not going to go away.

    the sooner we can do this, the sooner we can move on.

    we may not be able to be cured, but we can do things to make our lives more enjoyable.

    i hope you get to feeling a little better soon.

    lots of love.......Autumn <3
  11. harmony21

    harmony21 New Member

    only just posted that very thing last week

    this happens to me when others question my illness, I guess when doctors dont believe in it and we doubt it then how can we make others understand what we are going through

    I asked my doctor this very morning whether i had FM, again

    I think our symptoms are the same but different because of what else might ail us ie diabetes, high blood pressure, menopause etc

    Maybe its part of the illness, the doubt

    I dont even want to use the word sick and now say have not been well

    dont worry though you are not alone

    just hang in there we understand

    angel hugs and miles of smiles

  12. bunnyfluff

    bunnyfluff Member

    read my post on what is REALLY making you sick.

    You don't have "the fibro"! It is a collection of symptoms and for the most part, *they* haven't tested you for anything of any merit.

    *They* are just trying to put a bandaid on your symptoms, but never looking for the cause. Most Dr's have no idea. Some specialists will do more in depth testing, but it is going to be up to you to get answers, not settle.

    Most of the thyroid, endocrine, nerve pain, myofascial problems are a bi-product of what is making you sick.

    That's the part you need to figure out.


  13. Didoe

    Didoe New Member

    I couldnt believe what i read in your post, "stuck in fight/flight" re: FM

    i have no medical training, but since '86 i've been trying to explain to docs this exact physical situation--it started out feeling like my glands on eacch side of the throat, the glands docs feel around where your ears are? They were in overdrive, constantly gunning, every time the slightest sense of stress or perceived danger, which was constantly because of PTSD coming from divorce etc--usually this feeling of glands gunning happens for a moment when you gear up to deal with trouble or danger, with me it was constant--and then it stopped completely, as if short circuited, I dont get it anymore and i also have absolutely no ability to fight/flight--it feels like --danger? drop and wait (as in wait to die)
    It may have started from emotional stress, it became locked into physical as described. I was diagnosed first with FM and then rhuematoid arthritis--this book sounds amazing, can't wait to read it, thank you so much for posting this info...its amazing how we never know what we write or say will do for someone else...

  14. victoria

    victoria New Member

    It can be a result of, OR directly caused by a disease.

    For instance, when they experimentally gave pts in a schizophrenia ward penicillin in the 1930s, it was reported that they were able to release over 1/2 of them - because apparently they had syphilis, was the conclusion!

    If syphilis, a relatively simple organism compared to lyme (both are in spirochete family), can do that--

    what can these other bugs do that can go intracellularly - be it lyme, mycoplasma, bartonella, etc.

    My son's first symptoms were 'psychological' - depression/anxiety; and it's no wonder he responded atypically to any kind of meds as he had lyme, bartonella, and babesia.

    Just an example. Believe me tho, I certainly know that losing one's lifestyle, having chronic pain, etc. will cause depression all on their own due to these DDs! How can it not!

    FSU's star quarterback in 2005 was found wandering the streets disheveled, claiming he was God, disoriented, etc.; hospitalization and many tests didn't reveal anything until a family friend suggested getting tested for Lyme. Yes, he was positive, and by getting treatment he was able to return to school, but not football sadly.

    Not everyone has lyme, but, there are so many stealth pathogens caused by ticks and mosquitos... and who knows how else. There is another 'universe' inside each of us...