Discussion in 'Fibromyalgia Main Forum' started by onecangomad, Mar 12, 2003.

  1. onecangomad

    onecangomad New Member

    NoMore cuz' I can'take anymore!

    (Like I have the option to even THINK that...lololol)

    Nine years of my "life".

    Reading this board......I remember so well when I started out.....and so many times over the years when I thought I had found ways to feel better.....and I had hope....and could give hope.....but NINE YEARS LATER.....enoughenoughenoughenoughenough.

    If there was ANYONE left in my "life" to get the food, medicine, and keep clean sheets, and jammies comming I would go to bed, and not get up.
    Don't even THINK about suggesting antidepressents.....these stupid horrible drugs they keep us on only make things worse.
    So drugged we no longer complain.
    What's the difference if I can't live my life, or leave my house because I'm so drugged up I can't move...or if I can't do anything because I am ill!

    Excuse the rant.

    Madness is the result of nine years of this horror.

  2. marecee58

    marecee58 New Member

    So many docs like to treat the symptoms, not the cause. They don't even take into consideration that the pain and frustration has caused the depression. I totally agree with you about the antidepressants, for some people they just don't work and other causes for the symptoms need to be investigated.
  3. onecangomad

    onecangomad New Member

    They treat the symptoms...not the cause because so far there IS NO CAUSE!
    I've spent years in therapy.....and studying meditation, and mind techniques because I got so sick of being told I was just "unhappy", or "depressed".
    I don't care WHAT the cause is I have no problem taking whatever route is called for to get well....if I am mentally ill....well so be it, and let's get to work fixing it from there.
    Now I have a psychologist who doesn't believe my illness is based in mind.....and doctors who don't see a medical Arrrrrrrrrrrrrrrrrrrrrgh!!!!!
  4. onecangomad

    onecangomad New Member

    Yeah I have been on them all.

    Every tricyclic there is.....all cause weight gain, and zombiedom.

    Benzodiazapines (sp?).....anxiety attacks, AND zombiedom.

    Seratonin Uptake Inhibitors......a whole wealth of horrid side effects that are too uncomfortable to even slip into zombiedom!

    Luckily I have one doctor who has watched me over the years, and is still working with me.
    Got great results all of last year with an antibiotic/antiviral combo.....but am losing ground as they lose effectiveness.

    Hence the screaming today.
    I really thought I was going to be able to have at least some kind of life again.
    Have spent the last year writing new material, and planning my big comeback in music..........HA!

  5. pinkquartz

    pinkquartz New Member

    i feel a lot of sympathy with your post. i've been ill so long that i cannot keep thinking about myself or this stupid illness the same ways.
    i haven't lost my hopes of getting better but the way i see it now is not that i will ever be well again so much as i still believe i can improve.
    i never believed theres any chance of this DD being depression, cos i had a mother and sister with depression and its so different. mind you you can have both depression and a physical illness but that not my point.
    i won't take the antis' i was pressurised once to do so,and i got zombied, and i will not go down that road cos if nothing else i want to have the clearest sense of myself and my being that i can though its all feeling eroded and fragmented enough after years of being so ill. i do understand that some people do well on some anti depressants and i respect that , but its not my way.if they worked for me i would take them.
    i feel abit low lost and hopeless today so i hope i'm making sense. i think you have to learn to trust yourself your guts, your instincts, your self.
    if you put your faith in doctors you will get lost . find a good doctor to work with.
    This board is a great place. There are so many wise people here with so much knowledge between everyone.
    i have been coming here for a short while and its really helping me to feel less isolated, less wierd with all my many wierd painful difficult symptoms.
    I come here and find out that someone else feels the way i do and it really helps me.
    The problem is the illness not me and not you.
    this is a long reply for me, i hope its not too off the point,
  6. violet2005

    violet2005 New Member

    Even though I'm a new sufferer of chronic fatigue, my current findings about this syndrome (disease for some) is that they are starting to learn of a way to actually detect it through testing our blood's protein. They are trying to find out the cause but they still haven't figured out a treatment. The woman at my job who has had it for a little over a year now has found tons of people who live every day of their lives with this, most of them have had it for many years of their lives, some have been bed ridden and had to stop working but later began improving and started working again. So far, it is my understanding that this overlaps other ailments and is hard for doctors to understand and detect and making it very difficult to find a proper treatment. I really thought I was dying the way that I felt and nobody seemed to believe or be sympathetic to me at all. Everyone were saying things like "you just have to be positive" or "you have to push yourself not to be that way" or "you don't look sick", "it's in your mind". People who do not have it or experienced it don't have sympathy for sufferers because they feel that we are not handicapped and are walking around, working, and living what appears to be just an underactive life. The emotions are very overwhelming at times, along with the exhaustion, and the symptoms, but some days are better than others and no matter what happens each day, I try to think to myself that it could be much much worse than this but thank God that it's not.
  7. NightAngel

    NightAngel New Member

    .......and counting. I was dx'd with FMS in 1989. Symptoms started in 1985 after I had my 2nd son but it wasn't until 1988 that I really fell apart. I understand your misery. Just yesterday I told my husband that I was having suicidal ideations...mind you, I said "ideations" which is different from planning it out. I will never kill myself, but sometimes I think it's a release just to think of never waking up so I don't have to feel this pain and this fatigue anymore.

    Life is just too precious and beautiful to give up, though. Even if I have to be tortured until I'm a little old lady, I choose to live. For those of us who are severely affected with FMS and/or CFS, yes, it is torture.

    I feel more sorry for my husband and kids than myself. I know it is so hard for them to only have a part of me that is still alive. But I know they'd rather just have a part of me than none of me.

    Just my scattered thoughts on a weary day.....
  8. Shirl

    Shirl New Member

    A big welcome to both of you. I have this for twenty plus years, so feel free to rave on if it makes you feel better!

    We all do it sometimes.

    Same here with the drugs, they seem to help some of us, but they were not for me.

    Again, welcome to your both, and hope we hear from you often.

    Shalom, Shirl

  9. tandy

    tandy New Member

    the pain&misery these DD bring!! I live it too....everyday.Seems the good days are very far&few.
    I've come to except this,(in a way).It really could be worse. keep smiling!
    (who wants to slap me??)lol
  10. teller7

    teller7 New Member

    Do you have CFS? I can't imagine putting up with this for 17 years. Wow. I was just diagnosed and I'm sick of it already after 3 weeks. I feel so sorry for you
  11. Lynda B.

    Lynda B. New Member

    I have tried to tell him that so far only a small percentage (like 5%) ever get "better". He finds that hard to believe.


    Lynda B.
  12. griswoldgirl

    griswoldgirl New Member

    It has been so many years since I woke up feeling even okay that it makes me want to scream too!

    It gets old, lonely and monotinous living with this DD on a daily basis. No matter how much my children or husband say they understand I feel they have no idea. Right now I am challenged with physical therapy exercises for my knee surgery which of course flare the fibro, big catch 22. Have no choice though, it was my decision to have the ACL recon so I could walk again and do my job as an ultrasound tech. I am not registered yet and I am trying to study physics and anatomy which I have not had in school now for 3 years and it is hard--nothing seems to stick as well as it did. I have zero motivation today to do what needs to be done. I'd rather sit and comeserate with you guys LOL

    I, too am mad as heck and want it to stop. The fog, the pain. the hightened sensitivity, the muscle spasms, the racing thoughts, the depression and constant mental gymnastics as I call it.

    I have contimplated suiside-figured I cannot take pills because I have been on narcotics for so many years that they will not kill me. I cannot jump from a high buiding scared of heights. Sometimes when my kids are mad because I cannot take them here and there and are mad at me for being ill all the time I think why did I have children? I had no right. I am not a good mother. I am a lousy wife and housekeeper and on and on and on and on--then I have to play the other tapes in my head telling me that I have done a good job with my kids, my accomplishments to despite this disease and others I suffer from is amazing. I have not laid down and died-I fight to live each day and find some joy. Then I start thinking of what I am greatful for and if I am lucky enough to keep that train of thought going for a while I get out of the rut!

    I am on antideppresants. I am diagnosed with situational depression and adjustment disorder and anxiety. Just names they have to put on my records so I can continue to see councelors and insurance will pay for it, right now I need to see my therapist but my income will not allow it right now--lets see food or therapy--food wins!

    I cry, probably not enough-I want to cry on my husbands shoulder but he is fighting his own demons right now and I dare not risk it because the last time I did and cried how I did not know if I could ever pass my boards and hold down a fulltime job again-he went off on how he cannot carry the ball and the whole financial responsiility for the family-the traveling he does as a travel tech is killing him, my children have very little disapline with him gone because they walk all over me when I am down. etc etc etc---------he is scared as hell while he is fighting extreme depression and what I think is bipolar personality but not diagnosed as of yet. he emotionally overeats and has ate himself to a size 52 waist and hates himself. He is needy and wants his back sctatched and his feeet rubbed etc--and I scream inside what about me????????????????

    Right now I am staring at the 4 loads of laundry which need folding, the exercise equipment for my knee, my physics book and do not want to do any of it. I want to run to the beach and lay there and have drinks with umbrellas in them for the rest of my life!

    Because I am a responsible adult I will eat breakfast, so my exercises and study today as usual. Do I want to? no What I want is the opportunity just to be ill for a while with no responsibilities but me--but that is not a luxury I am afforded unless I want to abandon my family and myself.

    NomoreNomoreNomore--sounds good but is not reality today so I will sign off now and go about my business as usual-it was nice to get it off my chest!

    LOL cathy
    [This Message was Edited on 03/13/2003]
    ps- It has been since 1984 for me with endometriosis, this disease and others--it seems like a lifetime![This Message was Edited on 03/13/2003]
  13. onecangomad

    onecangomad New Member

    Yeah.....see.....a lot of my problems stem from the fact that unlike most I speak to with this disease.....the so called "loved ones" in my life all bailed out on me after a few years of illness.
    I was supposed to get well after the their eyes I have simply kept this up for sympathy or something.
    In their eyes cancer was a good excuse.
    This is not.
    If I was doing this for attention....well...considering the thundering silence I live in, and the absence of any company at all....I would have given it up years ago.

    I have been totally alone now for four solid years.
    And I mean one to help with anything EVER,and no $$$ to hire help. No one to encourage me, or pat me on the head once in a while, no arm around the shoulders when my spirit/strength fail.
    Just groceries to get, yard to clear, house to maintain, laundry to do,cats to feed, doctors visits to drive to, prescriptions to pick up......all the million little things it takes in order to have a place to be this sick in....I fixed my own roof last year...just the chores of maintaining everyday life......alone, and sick.

    I might be doing better if I hadn't been thrown into solitary to serve this sentence.
  14. Bambi

    Bambi New Member

    After over 20 years of at first just
    aggravating shoulder and neck pain,
    feeling like I was toting a 40 pound
    child on them everywhere I went, through the years and years of slow
    progression of this "non-progressive"
    illness and then the last five years
    when it picked up speed and became the door to door flare that never ends that it is now. Today I'm 55. I
    never thought I'd reach this age and
    be basically finished with an active,
    rewarding, "FUN", life. There are still good times, a rare good day but
    at times that doesn't seem enough to
    make it worth the struggle of the bad
    to worse days. Still we must somehow
    dig down and find that hope, however
    dim, that they will find a cure or
    at least a consistantly helpful way
    to give us a degree of remission. It's often hard to find. I'd love to be going out tonight to celebrate my
    birthday, but that won't be happening. I've been lucky in that I
    don't feel dopey or drugged by my
    medications and for that I'm grateful. Just know that you are the
    only one of you there is. You are special and important and you can do
    a world of good by giving support and
    love to those who come here freshly
    diganosed or even those of us who have dealt with these dd's for a long
    time. That is worth a whole lot. Noone here is dispensable, all are important and needed to keep the rest
    from drowning in frustration and the
    feelings of just giving up. Noone in
    this life has things just perfect and
    we certainly don't come close many
    days. But we are individually a powerful force for encouragement and
    love for one another. Hang in there,
    don't give up...and know that every
    day you continue the struggle you help someone else to do the same. I
    could not stand to think that my giving up might cause anyone else to
    follow suit. Cure or at least better
    days may be right around the corner
    and we all need to keep the faith that even if it isn't in our lifetimes it may be for those coming
    behind. You are one of a kind, noone
    will ever have your special thoughts,
    talents and feelings..and you are needed to share them. (((((HUGS!)))))
  15. selma

    selma New Member

    Just hope you are taking advantage of All the meds now available to us for pain not depression. Work with your doc to get off them after a while But Use them when needed.
    Start with Ultra/UltracetTo patches etc....
    Look up pain meds.
    You aren't meant to stay in bed unless you can't move.
    I was down a few days ago and had to have my husband drop the pills in my mouth and brought me water with a straw so lying down I could take it. Couldn't move !
    Since you're able to type Im praying that you can help yourself by arranging the appt. Can you order food over the phone? Is theere a pharmacy that delivers? Etc.
    Your input on what is working will help many others.
    Happy that you are here. Sorry that you haven't found relief. Took me 17yrs or so. BUT I'm so greatful for all on this board. And yes feeling better than I did.
    Yeh I khnow horah for me. Well we will find a cure and you will find relief. Yeah ! for You staying in there.
    Love and soft hugs, Selma
  16. onecangomad

    onecangomad New Member

    Hi Pink.

    I too come from a long line of depressed women.
    That's why I can't get it out of my head that this may very well be in my own head.

    My psychologist has offered to "Certify" me sane if it would help!

    Gawd I wish I COULD go insane!

    The lady who used to sit on my corner in NYC and scream at her socks was HAPPY!!!!!!!!

  17. pinkquartz

    pinkquartz New Member

    i'm not from a long line of depressed women, my grandmother who is still alive in a home seems to be immortal ! she took to drinking in her 80's because she had become too old to party. I was already in a wheelchair and had no sympathy at all !! she was happy enough but my poor mum and sister were not.
    Anyway, its up to you what you choose to believe, you must know inside your self if your illness is physical ?

    What type of cancer did you have ? you have been through a terrible time.
    I spend a lot of time alone, but you say you have absolutely no-one, really?
    I know that people get tired of us being ill all the time. My parents still expect me to sympathise that old age is catching up with them when they never show any concern for how i am!!
    this hurts me, even though i know its a reflection of the way they are.
    i was only close to my sister and a cousin, both have died in tragic unexpected ways and i'm only telling you this to say i can relate to your pain of feeling alone in fact i was so upset that i blocked out my daughter, only later did i see my grief stopped me appreciating what i still had. Its natural to feel whats been lost more.

    I often crave and crave what i used to have but its gone and i have to live with what is, what still remains and some of it is still good. Even though its hard to feel happy with less,i can do it sometimes but not all the time.
    so i hear your pain , but who can you talk to ?

    i made myself open up and chat to people i wouldn't have before, its cool,i have made new friends.
    Its a way to start . really.

  18. onecangomad

    onecangomad New Member!

    Oh I so-o-o-o-o-o-o-o-o-o-o-o-o wanted to be able to just lift you out of your life to somewhere tropical, and soothing if only for a day when I read your post.
    Gawd it is all so hard to I am dying of isolation.....and you would more than likely kill for a little solitude.
    Why isn't there more BALANCE in our end of the Universe????

    Onecangomad.....others can too.
  19. onecangomad

    onecangomad New Member

    My message board skills are very rusty.
    I saw your post on the other thread, and came here....and man I am like overwhelmed as suddenly I am in this torrent of conversation.....and pschewwwwwwwwwww huh?

    Also I can't see the message I am responding to for reference.....and that is making it difficult to answer there a way to do that or is it a cruel joke on our memory problems????'s like they seem to feel that since I/we will ALWAYS be sick then we don't get "sick people" sympathy, or treatment at back when I was first trying to get pain meds and a doctor told me that I was likely going to be in this pain for the rest of my life so he couldn't very well give me pain meds forever could he??????
    The classic line which I am guilty of throwing at my own Mother when I was a child, (who very likely suffered CFS and still appears to) "But you're ALWAYS sick!"
    My son said it to did the did everyone else who used to say anything to me......I mean..we can't expect them to be sympathetic, loving, and supportive if this is going to be a DAILY PROBLEM can we???????????

    Gawd....see....I can't remember specifics from the post I am trying to answer, and so end up raving about myself!!!!
  20. onecangomad

    onecangomad New Member

    Thanx for the welcome Shirl. :)