Another Year Yet Everything Is Still The Same Is It Worth It?

Discussion in 'Fibromyalgia Main Forum' started by deniset524, Dec 28, 2006.

  1. deniset524

    deniset524 New Member

    As another year comes to an end, and with my fibro symptoms at their peak, I just wonder how people live year after year with a chronic, painful disease. I don't look sick, so therefore I must not be sick. I have just moved to a new city, yet I haven't found a doctor because I just don't have the strength to start all over again - how do you find out if a doctor "believes" that FMS is real or not? I went to so many in the past 4 years that did not believe that my pain was real - they actually made me feel as though I was crazy. I think I would have rather have been crazy at times than have to endure the constant pain.

    I'm not asking for a pity party. I realize there are people in the world who are far worse off than I am. I just don't know how people do this. I am supposed to start (another) new job on January 2. I am only 46 years old and can't believe that my life is destined to be one of sitting home, so I have a job working with college students starting in less than a week. It is what I am trained to do. But I am so afraid of getting sick again and know that I don't have the strength now to hardly get by doing the minimum.

    If anyone has any words of wisdom, or just wants to tell me to stop feeling sorry for myself, I'd like to hear from you. I think that's what this forum is for - I hope we're here to support one another when we need each other...
  2. susabar

    susabar New Member

    I know JUST how you feel and I believe this is one area ( the boards ) where people can honestly say that !! You are not alone !!! I am having horrible depression since Xmas night asking myself the same questions.....
    The answer IS you have to keep going and not stop... whether it is in this new job or anything else.... It's my secret but honestly I have NO CHOICE... my husband left two years ago... ( no contact, no money etc...) So I am left working full time, doing everything myself, raising our 13 year old myself... and work and the chores never end... I have no real life other than working and recovering from work, and doing it day in and day out.... I go to bed very early... I can't go any where that reguires alot of walking ( ZOO , Mall etc....) and i cry sometimes when I realize I'll make a lousy grandmother some day.... I am afraid always that something major will go, the heater, car etc.... and then i get really scared thinking about the day I just can't work anymore.... it's all so scary BUT .... take one day at a time, I have amazed myself at what I could actually pull-off when I've had to. A friend says that which does not kill you will make you stronger.... FM has make me stronger in other ways perhaps spiritually.
  3. JazzieS

    JazzieS New Member

    HI, Deniset524,

    Whether one has FMS, CFIDS, or any chronic and very debilitating illness........it gets frustrating and feeling hopeless sometimes, especially when the medical world doesn't offer us much hope. YOu have all the right to have a self-pity party from time to time.

    I've had CFIDS/FMS both for 13 going on 14 yrs now. In addition, I also have Addison Disease, and recently Cardiomyolpathy.

    I just don't want these monsterous diseases defeat me, or define me as a person. I take one day at a time, always baby steps in whatever I do. When it gets too much to bare, I give a from the bottom of my lung, old fashioned 'AAAAAAHHHH;.

    For all kidding aside, my friend, don't give up and hang in there tight. Here's sending you gazzilion feel-better-huggies.

    Jazzie

    You have all these loving, supporting group here at Immune Support Board, who fights on everyday like you do.
  4. mrpain

    mrpain New Member

    At least I'll try to put a positive spin on our situation.
    I think we need to say, well; we've made it thru another year.....Or; things could be worse than they are.....

    Or; it is always possible that they will find a cure soon.
    Prayer changes things and it does help if your a believer.
    But like you, I'm struggling with pain every day and sometimes it is hard to make sense of it all.

    I had to retire from my carreer at an early age and I wonder all the time about what the future holds.. Besides the pain there's fatigue, ibs, can't sleep, and that sensory overload and light, sound, smell sensitivity just to name a few..

    But I write this to let you know that your not alone.. And this board with these great people on it will help you more than you know.. Some of the advice that is given is real helpful... You just have to see what works best for you. Changing your diet and finding the right vitamins & supplements could be of some benefit for you..A good night sleep would help also but that's one I struggle with. Well take care and hopefully you'll find the right solution that will help your particular needs.. Take care!
  5. deniset524

    deniset524 New Member

    I appreciate those of you that took the time to write...I also had to "retire" from my career of choice early because of FMS...while the new job that I'm beginning on Tuesday is along the same lines, it's just not the same, and I am sure that's why I'm not as excited as I would be if I was still able to maintain the pace needed for my previous work.

    I also wanted to clarify that I still have a supportive, loving husband. He has been with me - but I know that this disease is difficult for him as well. He is very athletic, and his solution for most of lifes ills is to "go work it out (run, lift weights, etc)." That sounds good, but isn't always so easy...

    Thanks again, and keep writing if you have things to share...I do appreciate the replies.
  6. pbslp

    pbslp New Member

    Denise,
    I'm sorry that you are having such a difficult time right now. I will pray for you.

    One thing I thought of is that this is a difficult time of year for many people, even those who are not physically ill. So, everything may be compounded right now. I know everyone's FM symptoms etc. are different. Do you have kind of cycles of time that are worse? It seems like you have a lot of stressors right now with a move, a new job, and concern about finding a doctor. I may be wrong because I don't know what you are dealing with, but maybe it's a time when you just have to figure that for right now you'll have to just be good to yourself.

    I wonder if there is a Physician Find phone number in your area that people use to find a dr? Some of them have bits of info about the dr. Like, Dr. ____ accepts the following insurance, treats many patients with _______ medical conditions, young adults, etc., I live in a rural area that wouldn't have anything like that, but maybe you could find one. Or, when you call a Dr.'s office you could ask the receptionist if the Dr. treats patients with FM. Maybe they would give you a clue?

    When I am really upset (sad, angry, scared, hurting) I use a spiral notebook or whatever and start writing. I write whatever comes into my head. At times I am almost writing without even being able to think about what I am writing. I write until I've emptied it all out. This especially helps me if I can't sleep, or I'm angry. Some of them I keep, and some I just tear up and throw away when I'm done.

    Praying for a better day tomorrow.
  7. PVLady

    PVLady New Member

    I want to give you a word of encouragement. I was very sick for years, and especially the last few years. I had terrible muscle pain and would go weeks staying inside, practically bedridden.

    Finally a doctor gave me MS Contin that completely stopped the pain. I stayed on it for 9 months and had to stop due to side effects. During the time I was pain free it gave me a chance to become active again. I mean, it did stop the pain cold.

    From MS Contin I transitioned to a drug called Subutex which is a mild opiate (also used to prevent opiate withdrawal). You dissolve it under your tongue and it is much easier to taper off of - also you never have to increase the dose. It also treats pain, or fills pain receptors in your brain as my doctor explains.

    Anyway, I have been on that drug for 1 1/2 yrs doing well. No more muscle pain or bed days. The only others meds I take now are Tylenol and occasional Ultram.

    I still have CFS - Epstein Barr - which is inactive, but I am not cured. I don't have the stamina like others but much better and not in pain.

  8. alaska3355

    alaska3355 New Member

    Prickles is someone you'll want to meet here- she has good posts on FM and some natural ideas about help for pain management. Look up her posts on TENS units- maybe that will help since you are starting a new job. Good luck!