Discussion in 'Fibromyalgia Main Forum' started by Kim, Jul 29, 2003.

  1. Kim

    Kim New Member

    Dear Friends,

    I'm posting this that it may help someone avoid going through something I went through in 1999 and almost fell into once again this past year.

    I started defining myself around my illness. Every new symptom, every ache and pain, every article, test, opinion. Eventually I became consumed with my illness and the symptoms became much worse. The worry led to my immune system crashing and major depression setting in. This further increased my worry and anxiety level until it was necessary to be hospitalized. I spent all my energy on the computer asking other people about their symptoms and my whole life collapsed. I thought up other illnesses I might have (MS, candida, etc). I was consumed. The joy left my life.

    I have a close friend who has vertigo. Because I suffer from constant non-vertigo dizziness, she calls me often wanting to compare symptoms and speculate on other "things" she might have. She is 46 and it's the first time she's ever been sick. I see her falling into the path I took.

    Please, friends, don't take this in a negative way. This board has provided me with quality, loving, and useful information. I just want to make sure it hasn't become your life. I know how awful severe pain is and I know how desperate you can get to feel better. But make sure you don't let this illness (or any other illness you're contending with) consume you.

    Love and prayers,

    [This Message was Edited on 07/30/2003]
  2. LeLeHpr

    LeLeHpr New Member

    Thanks for the post Kim!

  3. nancyw

    nancyw New Member

    Hi Kim: I found myself doing the same thing when I was first diagnosed back in January of this year. I actually think it's a phase that you go through when you finally find some support from others that are experiencing the same thing you are. I have probably had fibro for years and years, but no one was every able to connect the dots. I've had a real tough last two years and have been to all the specialists, etc., but everything is negative. After I gained some confidence that I wasn't imaging all these symptoms, I was able to relax a little bit. I do find, however, when something new happens I kind of backslide for a while and spend more time here. It takes a lot to learn to "live" with our challenges, but I think we all do that on a every day basis; sometimes we just need a little pick-me-up from others. Good post!
  4. Mikie

    Mikie Moderator

    This is part of cognitive behavioral therapy and it's called catastrophizing. I went through a period where I was doing this too. Therapy helped me with this, but it was the Klonopin which helped me with anxiety/panic attacks.

    Our brains are in a constant slight state of seizure and it can produce unfounded anxiety and panic attacks, among other things.

    I was also, after years of being sick, starting to identify myself with my illness too much. This happens so slowly that it may not be obvious to us. We start to define ourselves as what we have and not who we are. Therapy was a huge help with this too.

    Love, Mikie
  5. gumama

    gumama New Member


    I think you have hit the nail on the head for a lot of us...I think those of us who have never been sick much in our lives are more likely to fall into this than those who have had to deal with Illness more in their lives.

    This disease has a mind and will of its own, and it can make us think and worry about EVERY little thing... one of the worst things for me, was fear of the unknown... I have since learned that knowledge is Power, however how we handle that knowledge makes all the difference in how we handle our illness and lives..

    For me personally it was a control issue, I wanted to be in control and knew I couldn't always be... I am a Breast Cancer survivor and through that experience I have learned that with the Lord's help I can get through anything, but I have to do my part..

    Thanks again for bringing this to our attention. I for one am grateful you did..

    Sandy in the Desert .
  6. GooGooGirl

    GooGooGirl New Member

    When I first got sick, I went to every doctor I could, my insurance allows me to see any specialist at any time and I took full advantage of that. I just did not believe I had Fibro, I thought it was something much worse. I was living OK with my diagnosis for about the past year and then all of a sudden I started to doubt it again. So, here I go....through the merry go round again of doctor after doctor. I just need reassurance once again that this is what is really wrong with me and not some of the other horrible things I have been reading about. The internet can be a good thing but I do find myself reading too much about other illnessess that have some of the same symptoms as Fibro and I can really freak myself out sometimes.
  7. Donna39

    Donna39 New Member

    I agree with you totally on this Kim.I also went through the same thing as you.Before I was diagnosed I spent countless hours on the computer searching for an anwser as to why all this stuff was happening to me.I starting thinking that I had every disease known to mankind.I became so sick and lost so much weight,that my family thought that I was dying.I did not like who I seen in the mirror.I thought that I had cancer,heart problems,diabtes etc...
    If I read about it,I had it.My mind was controlling my body by now.This in turn would make my body start producing symptoms like heart palpatations, and extreme anxiety took over me. Even after all test came back okay,I was still not convinced.I had to get away from this computer in order to get my life back on track.Anxiety is a dangerous thing and it can be deadly if not dealt with.I know from experience.
    I am glad that you posted this message,because I was thinking about doing the same thing.Hope that it will help someone.
    Take Care-Donna
  8. tandy

    tandy New Member

    Your exactly right!! It can wreck havoc on your system.
    Its a balancing act....Its nice to come and have the support of others who know how you feel.But please don't live by the board and let life pass you by. And don't believe half of what you read on the net!!(be sure its a reputable source of info)................. Good day:)
  9. DTJ6PPC

    DTJ6PPC New Member

    >I have noticed in myself, I have to check that darn coffee machine twice to make sure it is turn off and unplugged before I head for work, or I will &#8220;have&#8221; to return home to check it. Mild, but present never the less.<

    I love your statement about the coffee machine........I cant tell you how many times that I have circled my neighborhood in my car in order to determine if I remembered to close the front and garage doors. What makes it even worse is that I have found out that I have left my home wide open (I live in L.A., robbery capital of the US)a couple of times due to the dreaded brain fog.......Don in Redondo
  10. zggygirl

    zggygirl New Member

    When someone has been deealing with it all alone for so long. But it can become too much.
    I finally have a good doctor who I can lay some of the burden on and Since I am going away for about 6 weeks and will not have access to a computer I think this is a good thing.
    I'm not even going to bring a book about it!
    So I'll get my break and be able to look at this with a new perspective and see how I need to make it more of an even balance.
    Thanks for voicing the thoughts that were in the back of my mind.
    But also thank all of you and this board and the people who run it.
  11. Sunshyne1027

    Sunshyne1027 New Member

    I am glad you posted about this. It has happened to me several times. Therapy helped. It brought on depression, anxiety. Meds helped a little. The way you explained your symptoms, then thinking up other things it could be.. hit home. I used to do that too. Spending too much time online, searching, researching your illness can be damaging, if done in excess for sure. Glad you talked about it.

  12. aafree

    aafree New Member


    My first post ever - bear with me!

    I was diagnosed more than a year ago, so I guess I've had this thing for 2-1/2 years or longer. I drive myself nuts trying to figure it out: what exactly is this thing, what causes it, why do I have it, etc. etc. It isn't enough for me to treat symptoms, as my goal is to make it go away! I, too, find myself discovering other possible illnesses, but the tests come back negative as so many of yours do. My doctor doesn't even question that I have FMS, since my symptoms are so obvious. I should be more comforted by the knowledge that this isn't necessarily going to confine me to bed for the rest of my life, but it's still hard to accept that I won't find a cure! I'm still looking :)

    My doctor says that we FMS-types are mostly perfectionists, and I can see that this is probably true. I wash my hands like an OCD person, and I double-check everything from my math to my calendar (yet I'm still forgetful in spite of myself!). I will probably re-read this message a couple of times before I post! Plus, I also worry all the time. I guess it is time to try the Lexipro and see if it helps the anxiety. Maybe that will ease the pain somewhat.

    I am interested to find a reply by someone who has a more mellow personality!

    My prayers are with all of you tonight,

    P.S. Any suggestions for relaxation?

  13. Sunshyne1027

    Sunshyne1027 New Member

    I am a mellow person by nature really. Though in the past I have been a over achiever, type A personality. With me though, it was the house had to be clean, the dishes washed, the laundry done, doing things for people, that they could do themselves. Like my kids and husbnad. Making it look like the picture perfect family, when it wasn't. Grew up like that too, taking care of everyone, when everything was falling apart, being abused. Always looking for love and understanding.

    Been diagnosed about 3 and a half years with it. FM. It came on sudden, though had some symptoms when younger.

    Suffer from untreated long time depression, but making long strides of coming out of that! Doing great, and that is because of letting go of the worries, about therapy. Realizing, its OK not to be so strong all the time, carrying it all on my shoulders. Its OK to get therapy.

    Deep breathing techniques, visualization, mediatation works for me. Relaxes. Keeps the worrying at bay. Becoming more spiritual has brought peace.

    It is something, about running so many tests, yet they come back normal. Could it be this, or could it be that, it can drive you so crazy.

    Glad you posted tonight, was nice reading you.

  14. dolsgirl

    dolsgirl New Member

    I agree with you 100%. At times I have started to fall into that trap & have after a car accident. But, I learned early on that if you dwell on the negative, you ooze negative vibes to you & others. My glass is half full. Good point & reminder. dolsgirl
  15. Kim

    Kim New Member

    Every time I post I'm amazed at the love, knowledge, empathy, and compassion that comes from people on this board.

    I saw my therapist yesterday. She always allows me to draw my own conclusions and only after I've made an observation will she concur or challenge. I like her style. She made this suggestion for excessive worry:

    Meditation is very good, especially if you've been trained. If you are too anxious to reach a state of peace during meditation, try yoga as part of a group. She also uses cognitive/behavior therapy to "minimize" worrying.

    Peace, love, and prayers.


  16. babyjoan

    babyjoan New Member

    Right on, right on, right on!! This is just another wrinkle on the sheet of life. Thanks for the encouraging words.

  17. zggygirl

    zggygirl New Member

    Got your post. Delete away *G*
    Sounds like we have very different lives. Kids, and activities and just all sorts of stuff to keep you busy!
    Yes the quiet is something I have to have. Noise from the TV just irritates me, but I love to watch a good drama or funny movie. I also love to read novels. Suspense, thriller, historical, etc. Just don't go for the true murder type books.
    The furniture restoring sounds very cool. I haven't tried that yet.
    I did finally get a new hobby I can do with my physical limitations. I wish I could work out like you! I do miss it. the natural high :)
    But I am learning how to make what they call lamp beads. They are made with melting glass with a torch. So far I am perfecting a round bead. Very basic. But they are beautiful. Takes lots of hand eye cordination. I love working with my hands so this is good. I just have to have something to do besides lying on the couch. AS someone put it"I hate my couch"!.
    well this is getting personal which means it should be on the chit chat board. From now on I will post there and let you know.
    Take Care of yourself,
  18. IntuneJune

    IntuneJune New Member

    "We are NOT our diagnoses!"

    (Everything else has been posted above-nice job)
    Fondly, June
  19. aafree

    aafree New Member

    Thought I'd reply before I pull that other post. I'd love to see what the lamp beads look like. They sound beautiful. I love colored glass.

    I like working with my hands too. Anything, really. It's nice to have something to show for the hard work. Virtual projects don't have the same satisfaction.

    I know how you feel about being on the couch. I am sorry you're there so much. Do you have good doctors right now? I think my doctor is good, but nothing has really helped so far. The fibro is slowly getting worse. I am fortunate, though, that he seems caring - he wants me to get better, so he is open to try anything. Still, I think I am a tough case for him.

    I need to count my blessings, though, because in less than a year we will be moving and (Lord help me!) I might be stuck going to the Naval hospital again. The doctors I saw at the last facility couldn't figure me out. Some came right out and told me it was all in my head. I can make a great case against "free" medical care, that's for sure.

    Okay, I'm out for now. I noticed that your other post disappeared, as mine soon will. Let me know when you'll be chit-chatting. I have yet to do that.

    Take care!

  20. insomniac1

    insomniac1 New Member

    hi i went thru the same thing i am now 36 and i have had this since i was about 14. i have also learned that one should not spend all their time just sitting around waiting for things or symptoms to show their ugly head if you do it will surly come. i am a chronic worrier and i catch myself all the time doing the exact thing your talking about. i thank God every day that i am now able to realise this and controll it.
    i do think this board is a good source of info. i have taken many things i have read about to my doctor and she was willing to listen so i have made some progress in my illness. any ways i do agree with you . we all need to try to live as normal of a life as we can and try to think positivly all the time. thanks for the post. kris