Do you believe that you will recover from this disease?

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Nov 25, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    To put it another way... Where do you see yourself in 10 years? Better? Working full time? Working part time? Disabled? Housebound? In need of a nurse for basic personal care?

    What has made you believe or not believe that you will get well?

    How do your beliefs about recovery affect the way you live now and the plans you make for the future?

    (( )) Shannon

  2. ladykew

    ladykew New Member

    That is what I believe. I've been treated for FMS for over 20 years, and my Rheumatologist has been following an antibody in my blood for all this time. I've had severe Grave's disease, and some other severe things that twice turned into septicemia, one of those times ended up in septic shock and I almost died.

    I have FMS/ME/CFS and Graves Disease, an Endocrine disease, as well as brain trauma from a brain contusion I got in a major auto accident that shows up on MRI's as a lesion 14 years later (or at least that is what they say it is from). I have my doubts, as I was also dx'd three
    times with Lupus before my Rheumy dx'd me with FMS and not Lupus.

    I have CFS, or at least I was told I had it, and I do have
    all of the debilitating symptoms of fatigue so severe that I have flares that last as long as two or three months when I can barely raise my head from my pillow.

    I know when I'm coming down with a flare..there's a feeling inside me that...Oooopppps, I've just overdone it, now, I'm going to pay dearly...I immediately get sore throat, low grade fever, and swollen glands. This part doesn't last long...only 2 or 3 days, but I'm totally bedbound for weeks or months.

    Now I'm having breathing problems. I have OSA, and have to have a CPAP machine at night. However, I'm not getting enough oxygen and I may need oxygen at night and some during the day as well.

    None of my doctors know what to do for me. My Rheumy is treating my symptoms; my Psychiatrist is treating my major clinical depression and severe anxiety (they are by the way in a different state).

    But the PCPs in this small town do not know what to do with us, and do not want to give strong enough medications to help the pain. They admittedly either do not believe CFS exists, or they do not know enough about it to treat it. I do not believe I will ever get well.

    Yes, the birthday cake icon is real. Today is my 60th
    birthday! I've been suffering from this starting when I
    was in high school, and it has gotten progressively worse.

    Hugs to all you wonderful people on the board! You help to ground me.

    Hugs to everyone,
    ~~Lew


  3. ladykew

    ladykew New Member

    Hi, Swedeboy. You are so positive. I guess I'm just getting so old, and having lived with this most of my life, I'm just worn out...!!!

    I will make a positive effort to be more upbeat towards getting better, although we have nothing here close by that I am aware of that gives all of these Protocal therapies I've been reading about.

    What is the first step in finding out the closet place one would be located to you? I think that is my biggest frustration. That, and not knowing exactly what tests I
    will need to determine what exactly I do have. Is there such a test? I remember reading somewhere there was a test of some kind for determining CFS ???

    Would appreciate ANY info any one could give me.

    Hugs,
    ~~Lew
  4. rachel432

    rachel432 New Member

    good question shannon. i don't know what will happen in 10yrs. i'm not hopeful for a cure, i hate to sound like a downer but i just don't see it happening. i really think the best i personally can hope for is to not let this dd progress. with the right combination of meds i hope to remain functional.

    the reason i don't think a cure will really happen is that i see patients all the time with fm and i don't see their dr's really doing much to help them or attmpt to cure them. mostly all i see is dr's doing basic symptom management for patients. if they don't try thing to cure it they aren't ever going to find something that works.

    as far as how i live now and how i plan to keep living. i have a lot of help from my very supportive husband who takes care of most of the housework. i do plan on continueing to work as long as i can.

    one big decision my husband and i made a few years ago when i started to have a lot of health problems was that we aren't going to have any children. it would just be to hard on me physically and so much of the responsibility would then fall on him and other relatives to help raise them that we just can't do that. we decided it was more important for me to be as healthy as i could be without children and that the two of us would just be the best aunt and uncle to an ever growing group of little ones.

    rachel
  5. no i dont believe i will recover from this illness.but i do believe that we all should start to make changes to our home and lives,while we are still able to.so we can at least live in our own homes,and try to stay out of care homes as long as possible.id give up for sure if i had to go into a care home.i like my own space.

    ive had comfirmation from my specialist that ive had this illness for 30 years now,but was only made aware that i was suffering from it 12 years ago.thats when the spooky things started happening with my neurology department.i call it that because its so complex,so many things went wrong.

    taking into account that im getting old now,and not as strong willed as i used to be.i believe i should plan for my old age, and this illness.its always going to be with me,because doctors havent done a thing to help me in the past,only give me amitripyline pills,then i was discharged .

    i might be wrong,but ive always believed life long severe migraine headache attacks,have caused me to have brain damage,and thats why the once so, strong willed person (that was me)is now a neurologists nightmare.they just dont know what they,ve done to us by neglecting us for all these years.

    but ill forgive them,if they would just make a patient aware of having this illness at the very start,instead of hiding the facts away,and letting this illness ravage our body.we only get one brain and i want to treat mine kindly for the rest of my life.i dont trust doctors anymore,and im no test subject.im old,fed up.

    i swear that i will try to keep my body mobile for as long as is possible.FOR ME,NO ONE ELSE.i will stay mobile.

    but i fear for how this brain diss order will affect me in years to come.having said that im living each day as it comes,i dont want to think about my brain,and the future,its scary.

    so ive pledged to make my home less of a clutter.make it more brighter,friendlier to my vision.i need bright decore around me,it makes me less depressed.depression wears the brain down so doesnt it.and lets face it,modern day life out doors is very depressing.but please,go out doors,dont shut yourself away indoors.enjoy the naturely things about you.

    life out doors is very fast,and as i get older and slower,i think ,,well the world can take care of itself.i am one person on gods earth,and its up to me,to look,after me.

    please believe that i never was a selfish person in all my life,but ive had to become selfish in order to look after me,my body is in need of help,it needs me to care for it.

    so to finish my long message ill just say.

    ive been let down by my doctors for so very long.but im still sane,still here surviving.yes its not a very good quality of life.but im now making a nest for my old age.it isnt money haha ive always been poor.but for as long as i can mentally look after myself,ill be grateful to ME,because after all,i got the most help from myself.not from those who went to colledge and sit behind big desks in a hospital.

    as scary as it gets with this brain illness,try to stay sane if you can.im working part time now.i dont know how long i can do that for,and i dont even want to think about it for now .but i give the weekend to me,rest up,chill out.let others do the chores or rot in their own filth.rest that brain and look after yourself.

    i swear that for as long as i possibly can,i will cope with this illness,and thank myself for managing to do so.but also think about being old with this illness,make preparations NOW while you still mentally can.

    take care all
    love fran
  6. smiffy79

    smiffy79 New Member

    its just a case of standing back and rethinking - re-evaluating.

    i'm on a good med balance for me and i take care of myself, pace through the day and eat well.

    who says you cant be what you want to be? just go about it a different way thats all.

    we can still reach for the stars just a little slower thats all.

    ps good thread shannon :)
  7. ikumdo

    ikumdo New Member

    Donnaeil, what's your management strategy? I would love to know.
  8. charlenef

    charlenef New Member

    SEEING I AM HOUSEBOUND IF I DIDNT BELIEVE I THINK I WOULD BE DEAD ALREADY. CHARLENE
  9. shar6710

    shar6710 New Member

    I am finally hopeful that I will be better, if not cured, someday. I may even be well enough to at least work from home.

    I have made dramatic improvement recently.

    I mostly credit Mirepex (see my update post) and also Transfer Factors. The Mirapex has cleared my brain fog and my doc has taken me off all sedating drugs and given me non-sedating alternatives and that seems to be helping.

    I have had a problem with sores, mostly on my scalp, that don't heal and since I've been taking TF the old ones have healed and I've not developed any new ones. I take this as evidence that my immune system is improving.

    I still have significant fatigue but I hope that it will improve as I continue to find an answer to my sleep problems, and find the right balance of meds.

    Shar
    [This Message was Edited on 11/26/2006]
  10. Slayadragon

    Slayadragon New Member

    I've been sick with CFS (drop-dead flu kind, no FM) for 11 years. I've been "stuck" at the 6/7 level for about 7 years.

    (Note that I have had plenty of things fall apart during this time that I have had to "fix." If I hadn't proactively kept on top, I'd be in far worse shape than I am now.)

    Until several months ago, I would have (like my grandfather, who also seems to have had CFS) anticipated staying at the same level of functioning from now (age 42) until my death.

    Recently it seems that people are getting a better sense of the cause of the disease (e.g. in the viral area) and how to go about addressing those problems. Some tools that might work are available now, and I intend to try all of them.

    In addition, drug companies now have very high motivation to work on things (and I'm not talking about Ampligen) that will be helpful to us. In ten years, they may be available to the general publlic, either.

    Especially considering the likely involvement of drug companies in making new drugs especially for us, I think the potential for me to feel substantially better in 10 years is fairly good.

    I will be 52 then, though. If possible, I'd like to get as far as I can a lot faster than that.

    Hopefully that will be possible.
  11. LottieWilkins

    LottieWilkins New Member

    For the first time in a long time, my beliefs have shifted from "management only, for the rest of my life," to "I believe I can be fully healthy within the next year.

    I've started some new treatments that *quickly* moved me out of the worst relapse ever. For about 3 months I went from 40+ hour work weeks, to laying flat, working 3 or 4 hours a *week*, and walking with a cane full time (if I was able to walk at all).

    2 weeks into the new treatment I had tossed the cane and was back to a full life, with hardly any of the limitations I had even gotten used to under maintenance! I was, and still am stunned, but am also able to take control of my health in a more powerful way than I thought possible.

    I'm even planning to work toward having the diagnosis reversed by this time next year (although understand that could be a long and challenging venture). Quite a shift from just 3 months ago planning for full time disability.

    *And* I totally understand the need for many of us to accept this DD as permanent, so that we can manage it and take good care of ourselves. Blessings and support, then, to all who believe either way.
  12. abcanada

    abcanada New Member

    I spend alot of time wondering that very thing. I've been on a constant decline for the last 2 years, mixed with very difficult pregnancies. I said to my doc just the other day that I feel the scariest thing for me is the uncertainty. In occurs in all areas of my life as I do not know what I'll be able to handle from one day to the next!!! I told her I felt that my body was rotting and that a 32 year old woman should not feel this way(going on 72). I also feel that my kids are suffering the most( not obviously), but the simplest way I can put it is that they just don't have me to do alot for them. I feel it's very unfair to them. I hope we all wake up one day and are 100% better. Take care, Laura
  13. butterfly83

    butterfly83 New Member

    Right now, honestly I don't. I'm hopeful, and i'll keep trying, but I don't even know what 'better' feels like. I don't remember. And for now its easier to try to be realistic and try to figure out a way to deal with my life the way it is now, not the way I wish it was.
  14. CanBrit

    CanBrit Member

    In 10 years from now, I hope I am still working at my job. (I'm 50 now and pretty much need to work until 65). I hope my husband and I are taking holidays travelling in a little Boler or Trillium trailer.

    If a cure for both conditions does not come about, I hope I am still managing my FM & CFS as well as I am now. The plans I do make are made with my current health situation in mind. I don't travel long distances well and need a lot of post recovery time.

    My daughter is a nurse and she doesn't believe that I will manage another 5 years at work. I'm hoping to prove her wrong.

    Regards,

    Eileen


  15. Andrew111

    Andrew111 Member

    When I have a good day I feel like it is proof I'm getting better. When I have a bad day, I see it as a temporary set back. When I take an objective look and where I was a year ago and where I am now, I realize I'm much worse than before. This is very scary, because I live alone and I don't have anyone to help me. So I try to keep my focus in the present, I keep searching for something that might help, and this gives me hope.
  16. nerdieduckie

    nerdieduckie New Member

    While I don't believe in a complete recovery within the next TEN years, I do believe I will get better, at least some. My doctor and I keep working hard (along with my parents) to do what is best for me.

    So, hopefully in 10 years I'll be starting a family, have a decent job, and be able to live.

    My FM doctor is making me believe I have a chance, because if one thing doesn't work, then he already has something else lined up to try if I'm willing to do so. Plus I have good friends and family so I don't get too depressed.

    I'm changing the way I'm living now by eating healthier (such a lie in the holiday season, but as soon as January hits... I was eating well before now as well.), I rest, and I just do what I can. I'm adapting my school plans to find a schedule that will fit my needs, such as online classes, and community college rather than a school almost two hours away (though I'm not not applying to them, since that's still almost 2 years away). Basically, I just try to take life easy.

    I'm still planning on becoming a parent in the future, I'm still planning on becoming a filmmaker in the future, I just may take longer and more steps to get there.

    I'm not giving up though, if I were smarter, I'd go work on finding a cure myself! Alas, science is not my forte, so I will have to leave that up to someone else...but maybe I'll get some sciency friends I can prod along >_> <_<
  17. Pansy1OK

    Pansy1OK New Member

    YES .... after having read the ebook "Recovery from CFS - 50 Personal Stories" !!!! It's got a foreword by
    Dr Teitelbaum and FIFTY !!!!!!!!! stories from people who have recovered right back to a normal life in all different ways - some of them after like 15 years and some of them were in wheelchairs etc. Most of them also give the websites and books and advice that they found useful and some of them even give their own email addresses so you can contact them if you want to. This is the best book I have read since I got ill. I can't remember the website address but if you key in Alex Barton I'm sure you'll find it - she is the person who's website it is. It is the best $10 I've spent since I got ill!! I really recommend it !!
    [This Message was Edited on 11/27/2006]
    [This Message was Edited on 11/27/2006]
  18. Shannonsparkles

    Shannonsparkles New Member

    P.S. Swedeboy IS cute. :)
  19. kholmes

    kholmes New Member

    Most days, I feel like something in me is irreparably broken. I have learned to live with acceptance of my condition.

    But I do know that I'll be healed eventually, if not in this life, then in the next. And the strange thing is, I do feel a sense of optimism that I will recover significantly, despite this feeling of being broken, at some point in this life. I have no idea when or how.
  20. painintheeverywhere

    painintheeverywhere New Member

    I strongly feel that in three years we will all have more answers and options to feel at least 90% better. I'm not sure why I believe three years...I could be fooling myself, but I think we have very smart researchers looking for answers and someone's gonna be rich!!!

    I would give so much to have my life back and I think it's going to happen.

    I really will adopt and foster as many kids as I can handle, if I ever feel better.

    I also believe in God and miracles and with all of our prayers we may have the ability to help healing begin......

    Thank you Shannonsparkles for your optimism and great post!

    Jane