A lifeless life.

Discussion in 'Fibromyalgia Main Forum' started by hermitlady, Oct 27, 2008.

  1. hermitlady

    hermitlady Member

    This is ridiculous, so much of my life consumed by this weakness and fatigue. It's just so bad and it never lets up anymore. I am so disgusted and too tired to do anything about it most days.

    I got a lot of great replies last wk about weeding out some of my meds, which I have slowly started to do. One at a time, day by day, I'll see if anything makes a difference. Probably won't. Nothing ever helps me!!

    I need to go have an ultrasound of my adrenals and more lab work to check amino acids. I can't stand the thought of having to get myself ready to go out of the house to get these done. I don't have anyone to take me, dh is too busy at work, friends work too. I just don't have the energy to move.

    I've been feeling so bad for months now. Everything in my life just feels wrong. I'm so miserable and I just need some support I guess. It's the same thing over and over, can't take much more of this, you know? How do you guys manage to keep a positive outlook?

    I'm sorry if all I ever do here is complain. You guys are the only ones who understand how it feels to be this sick. I just want it to stop.

    I need help!!! It's another day of feeling so bad, of feeling like I'm dying, what can I do to survive this??........Hermit
  2. bigmama2

    bigmama2 New Member

    i know it, hon. you are not alone. i have felt that way many times, and it sucks. its very hard to have a serious and chronic illness. very stressful. noone understands except those who go thru it. normal healthy people just can not really understand this. sometimes ya jsut gotta vent.

    do you get a chance to do some "fun" stuff sometimes? like rent a funny or interesting movie? or treat yourself to a mini shopping spree - buy some books on amazon. do you have a pet- cat dog etc? i couldnt get thru this without the love of my dog.

    have you had your ferretin level checked? (stored iron) mine is low and im taking iron pills called slow-fe and they are helping alot. treatment for adrenal fatigue (over the last 2 yrs) has also helped alot. i take supps called Miladregen and Isocort.

    take care- hang in there!
  3. SpecialK82

    SpecialK82 New Member

    hugs to you. I know exactly how you feel. You just need to focus on getting through one day at a time, sometimes it's just to overwhelming to think of the big picture.

    This DD is very difficult for us mentally and emotionally. A big part of the difficulty is the fact that most doctors just don't seem to get how sick we are.

    We will be here to take care of each other until a cure is found. Too bad we don't all live close by so that we could talk in person, I think that would help in times of lonliness.

    Think of all you have been through this far - you're a survivor! And everyday we survive is another day closer to a cure!

    Now, go get some hot chocolate, get under a blanket and watch a good movie :)


  4. GKTLA

    GKTLA New Member

    I am 35 and have been experiencing the severe version of CFS off/on for the past 4 years...however, I've been basically bed-bound since early Sept.

    I do not have a positive outlook and am certainly no role model for how to handle this disease. It is hell and I try to not think about it and numb myself to the entire situation so that I can get through. I also try to remember that I've been bed-bound for long periods of time in the past and recovered to a degree where I was able to do stuff every other day for a long time. I hope I can get back there soon but it seems to be out of my control.

    I just finished 30 days of Amantadine. I started Naltrexone 3 days ago and am trying to continue my Heparin therapy. But I am still too ill to leave this bed. My backside is very sore and I'm worried about getting bedsores. Pitiful!

    I could go on and on, too. All I can say is you are not alone and the disease tends to go in cycles. There will be some better days ahead at some point.
  5. Janalynn

    Janalynn New Member

    Hi there -
    First of all, don't ever worry about complaining. It is So hard NOT to complain. I caught myself hugging my husband today after a fairly normal conversation and then just started sobbing. Poor guy, he just feels so helpless, doesn't know what to do for me. Who does?

    The key for me, is that I absolutely have to take one day at a time. You find that you DO make it through that one day regardless of what the next day brings. I cannot or do not look way into the future - certainly not in a negative way. I still hold onto my long term dreams. We still talk about having a second home someday on a golf course maybe in Palm Springs - yes just a dream, but I don't let my Fibro enter the picture. I refuse to.

    I understand about not going anywhere or wanting to. I go nowhere except to work. If I didn't have to work, I probably wouldn't leave the house much. The funny thing is, when I'm out, I realize it feels good to be out in the world with other people, with the stereo on in the car, with the sun shining through the windows - if only for a few minutes.

    It's very hard to get out of the rut. We all get comfortable in our little worlds - as miserable as they are, they are familiar. Don't make an appt for me - I probably won't make it - my getting out has to be on my terms. LOL.

    I think it's critical that you find small things that give you joy. Doesn't matter how small. Something that takes your mind off your pain, your illness, the things you cannot do. You may have to force yourself in the beginning but it will be worth it. Sometimes I feel good when I just have a couple of good magazines, my house is relatively picked up, I'm under my favorite blanket on the couch and I have my favorite cup of something. Sitting outside in the fresh air also does wonders for the mind and soul. Sometimes it just clears the mind enough to give you a different perspective, as I said, if only for a few minutes.

    The hardest part of this horrible illness is the mental havoc it wreaks on us. Be gentle with yourself. It's okay not to accept what is happening to your body - but you do have to take care of your mind. You still have that. I have to tell myself that because I have had a very difficult time emotionally. I'm very very tired of how I feel both physically and mentally. I have to get a grip, some control back in my life. BUT I do know, that finding and doing small things that make me happy to help for the moment and right now, I have to live in the moment.

    Always here for you.......
  6. ladybugmandy

    ladybugmandy Member

    hi all. i am very sorry to hear about your suffering. i know it all too well.

    i was wondering if you have thought of trying antivirals?

  7. JoFMS

    JoFMS New Member

    Hi hermitlady,

    I may have posted this before but can't remember.

    Have you had a 12/24hr adrenal saliva cortisol test done? This was a godsend for me and revealed I am no in adrenal fatigue stage 5 and am taking low dose cortisol along with a whole bunch of other supportive supplements.

    It does sound like you may have adrenal problems and would strongly encourage you to get the test done if you haven't already.

    The cortisol and correct supplements make me feel a lot more positive and help me focus on healing. I am far less stressed and have a lot less worry - in fact I don't really worry about things anymore, I just let them pass and believe me I used to get very stressed all the time!

    If there were 2 tests that I wish docs would do straight off for us fibromites and cfs is adrenal saliva cortisol testing and a comprehensive stool analysis - I had both of these after 5 yrs and am now hopefully on my way to recovery.

    Get the support you can for your adrenals - read Dr Lam's website too and take all the supplements.

    I was adivsed to take the following for mine:
    Vitamin C 2g per day min
    Vitamin E 1000iu per day
    Vitamin B complex
    Vitamin B5 500mg twice a day
    Vitamin B6 50mg twice a day
    Zinc 30mg once per day
    pregneneolone 30mg twice a day

    I also take a herbal called Bioharmony adrenal boost which contains astragalus, amla extract, rooibos extract, piper nigrum and vit C

    Do all you can to support your adrenals and read all you can about them too.

    Take your temps 3 x day 9am, 12, 3pm daily - they should average 37C. If they are differnet form day to day with a wide variation then it means your adrenals need support. This can also help see whats going on with your thyroid - its been so informative for me and I can see when I need more of something by doing this. Google Dr Rinds temperature graph.

    Apologies if I repeat myself and I hope you start feeling better - hang in there and remember - it will pass even though it seems tho it wont. Look forward to feeling better one day.

    I've survived and know you will too - please just make sure you get the right tests and do the reading on adrenals if you haven't already.

  8. TeaBisqit

    TeaBisqit Member

    Everyone has more of a life than me where I live. And it's just awful. I saw one of my neighbors on her way to bring some homemade baked goods to her church this weekend. And I got totally depressed because I'm not well enough to go to church or anywhere else. I'm not really functional at all anymore. I can barely do the few little things I need to do to survive. And most of the time, I can't even do those and have to keep resting and waiting to feel a tiny bit better just so I can do them.

    I have no answers. I have no life from this disease. I don't know what I'm supposed to do anymore. So all I can say is, hugs and you aren't alone.