Can't Take Anymore

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Jun 25, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all. i am so tired of being sick.

    i noticed a tiny bit of improvement with valtrex but i feel the improvement slipping away as it did with the valcyte.

    it's been over 15 years now.....i don't know how much more i can take.

    it wouldn't be so bad if i could at least have the use of my mind...but i don't.

    i get more and more depressed the more i read...and the more i read, the farther away it seems we are to a good treatment.

    my doctor says i will "recover" in a year to a year and a half on the antivirals, but i cannot see that happening. i do not know how he can say that.

    when i start a new treatment, i start gettiing my hopes up...and dream of things i could do when i am well...but it never happens.

    i hate sitting here watching my life slip away. i hate it.

    i had so many problems even before i got CFS. it's so hard to imagine that there is a God out there.


  2. Lichu3

    Lichu3 New Member

    have been an emotional roller coaster for many.

    Take a week off from the research, Sue. You've done alot in digging up info recently. Trying watching free movies/ TV shows on (I recommend "October Sky.") Have a picnic in your backyard or a nearby park. Take a random bus ride -- you don't have to get off the bus, just enjoy the passing scenery.

    A strategy that helps me is thinking about the things I can still do and doing them, although it might be less intense or a much shorter time than when I was well.

    When I was healthy, I used to postpone recreational activities, trips, etc. There was always another project or deadline coming up. Now that I am ill, I'm learning to not let this illness postpone my life. One of my life goals was learning another language -- I can still do this but slowly. I don't have a lot of control over this illness but I still have control over other things.

    Don't watch life slip away; make new dreams for yourself and follow through with them as possible.

    One other exercise that is helpful: when you have a good day or experience, write it down and read those when you aren't feeling well.
    [This Message was Edited on 06/25/2008]
  3. ladybugmandy

    ladybugmandy Member

    thank you for the suggestions:)

    seems like you have been great at keeping positive and have been a help to me on this board...i am very thankful for the good people here.

    the brain fog is very bad right now .....perhaps it will lift a little tomorrow. i have many projects i started...crocheting....almost started learning piano....i will try to do them on a better day.

    i like the idea of keeping a journal during the better days....i will try to start that. the fog really makes it almost impossible to be positive for me. it is so oppressive.

    the whole conference thing did take a toll, you are right. they talked about valcyte and antiviral treatment making a difference but then also talked about the HHV 6 protein and that not being amenable to treatment.

    dr. lerner said he has an 80% success rate....perhaps i should do as he says and not research....but i cannot help it. i have had such minor, if any, sustained improvement.

    i wonder if there are any tests, besides RNase L, to give me a clue as to whether i am on the right track.....i know dr. peterson is very meticulous where that is concerned.


  4. JoFMS

    JoFMS New Member


    I read your post as the title is just how I feel now. I have had fibro for 6 years and CFS for 2 years and just feel I get sicker and posioned every day with new symptoms.

    I am convinced he CFS was made worse when I had 4 mercury fillings out in 2006 and I have gone downhill since. Trouble is I couldn't chelate with them in so not much I could do til the rest came out. So I'm having the rest out in 2 weeks properly and safely this time so I can start chelation.

    I also research everyday and it seems the more you do - just when you think you've solved it, somehting else comes up and because there are so many things going on with us then it's hard to know where to start. Horrible when your brain turns to mush and gets very frustrating.

    I drive myself mad sometimes researching but I won't stop until I have complete understanding and know how I can get better. My latest thing to try is my silver fillings asI know I have mercury poisoning and just want them all out as mercury exposure can be the cause of some of our problems.

    I also believe in the methylation block protocol as that seems to be what blocks us from getting better.

    Another thing I am looking at is my thyroid and writing down my temperatures ervey day to see how I can help my metabolism as I have a low body temp. Google Dr rind's metabolic temp graph when you feel up to it and if you havent already read it.

    I live in SOuth Africa and am going on a spa detox in Spain in September in the hope that I can just kick start my body into healing again.

    The treatments out here are apalling - I have no osteopath, cant get access to lots of treatments, diet prob suffers due to lack of variety of foods me being vegetarain, support groups are non existant and people are a tough breed here and their general attitude is 'get up and get on with it.' I'm from UK originally and actually very home sick right now but have no money to move back there so very stressful an often feel trapped.

    Trouble is we all run out of money - especially as some of us cant work. If I ever get better - I will tell the world and all the docs I saw who told me I need to see a psychologist.

    I think your doc is crazy to tel you that you will get better in a yr if he doesnt do something then how can you? I've stopped seeing docs as it just makes me more miserable.

    This board keeps me going to know there are other people out there like me - thank you ladybug.
  5. rosemarie

    rosemarie Member

    There are days when I am so sick of feeling tired, exhusted, fatiqued, PAIN, did I mention Pain, acheing body, missing words and so much more. So I understand what your saying.
    I Live in a small town that is biased towards pain doctors to treat pain with narcoitic's. My pain doctor went on trial because of a former patient who was upset at being dismissed from his practice. He has been thru so much that he may not be able to practice at all because of the charges she and others made.
    I had to change because of my insurance would not pay for his visits and I can't afford to pay up to a $120.00 .
    So I see a rehumy for my pain and he thinks I need to see a shink because I was in tears on my last vist.

    I just get overly emotional when talking about this DD. I know part of my problems from all that I went thru a year ago. My mom was ill and was in critial condition for months and I was the one who mades all the medial desisions, as I hold that power of atterney. I don't get any help from my Brother or sister. So the whole thing left me stressed out and now I keep having some of those panicked feelings I had last year at this time.

    Nights were really bad for me as that was usually when some thing went wrong, Mom got sick or worsened. I could not spend my life in her room so I spent my nights calling and checking on her. So now when I am hurting badly and am stressed over things I can't sleep and I get painc attacks once more. Wish that they would go away. Mom is doing better and is at home but at 80 and weighing 93 lbs , any thing can happen. So I worry about things I have no control over.

    I guess that I better read the Serenity prayer again and put it to use in my life..
    Any way there is not much in the way of treatments where I live, I could see a bone cracker and get a massage after having the chiopractor {SP}work on me. But that only makes things worse for me. I can't afford a massage from a spa, we don't have a warm pool for exercise's unless you go to a PT but my doctor does not think I need PT. So I am so out of luck.

    I am trying to think more postive about my life and the things I can do, it is hard to stop the old habits I have but I need stop doing those habits that are negitive and learn some postive habits.

    Sorry I am rambling on

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