Not a fatal disease?

Discussion in 'Fibromyalgia Main Forum' started by d-borah79, Dec 3, 2005.

  1. d-borah79

    d-borah79 New Member

    After being diagnosed with fm/cfs I was encouraged to hear that if was not a fatal disease. As time passed on I've started rethinking this theory. This illness in many ways has killed my professional life as a nurse. It has killed my social life, my recreational life, my ablility to take care of my grandson. And it has partially killed my marriage. What does a disease have to strip you of before it is considered life threating. The pride takes daily hits. I have 3 friends that took their own lives because of the symptoms of fybromyalgia and chronic fatigue. Two of them were men. I want a way to actually get back into life. I am a christian and have wonderfully understanding friends. I am am alcholic that is thinking about going back to drinking just to get a little excitement back in my tired, painfilled , sleepless migrained life.
  2. cajunv2001

    cajunv2001 New Member

    all is not lost,the bottle will not be your friend,and you need no more enemys,fm is managable,i go to a pain managment clinic,get regular site injections,and a regimine of drugs that works for me.
    it has been a battle yes,but i can pick up my granddaughter,and enjoy my life a little better,daily pain is still what i look forward to,but at 43 i have a long way to go.
    God Bless.
  3. Rosiebud

    Rosiebud New Member

    and it's a hard thing to get used to.

    Research has shown that we are allergic to alcohol, I know that if I drink it causes a relapse that can take anything from a few days to weeks and even months to recover from.

    I learned that the hard way and now only have a drink at Xmas or weddings, my body just cant take it.

    So if you drink then feel bad afterwards for a few days or weeks, then you'll know why.

    You have understanding friends so enjoy them. I've learned the little things in my life give me pleasure, it's not the fulfilling life I once had but hey, it's all I've got.

    love
    Rosie
  4. Fudge43

    Fudge43 New Member

    Your perception of what has happened to your life is far more accurate than any doctor who is "treating" you ..
    Having said that .. you are the best person to figure out what you can find enjoyment out of ..

    I'm with Rosiebud about the alcohol .. I tried to have a glass of white wine last night, every few months I get fedup and think why can't I have a little pleasure from that ! .. I PAID for it almost immediatly .. up and down all night .. felt sick as a dog .. dry heaves .. I thought my head was going to blow off let alone that my face and brain felt like they were on fire .. this morning I feel like I was run over by a VERY big truck .. it just isn't worth it .. that is what I'm trying to say ..

    You may react differently .. but you would only compound your problem, believe me .. we have all been there to some degree.
    So ... what do we do then ? .. each individual can find something ..

    A couple of days ago I jarred some of my dried herbs for my girlfriends (who I see NOT as much as I used to, due to how I feel .. so each get together is special).
    It may sound strange but I got so much pleasure picking off the rosemary leaves and mixing them, crumbling the lemon thyme, oregano .. the smell was heavenly and it was like a happy flashback to my garden ..

    If you read .. a good book is wonderful to lose yourself in. Movies, TV ... music .. take timeout to watch or listen to something you like!
    Meditation .. simple yoga stretches .. you would be amazed that a routine of those activities can make you feel so much better !

    There are things you can do for yourself .. it takes a little work to find what is right and good for you .. but please give it a chance .. don't go back to drinking it will only make you feel worse.

    There is something out there for you to find pleasure and relaxation in !
    Good Luck
    Fudge : )
    [This Message was Edited on 12/04/2005]
  5. Dee50

    Dee50 New Member

    I total understand what you are saying.

    I too am a christian.

    I know about drinking been there done that. You know that's not the answer.

    Please, please remember to be thankfull for what you do have.

    Because if you stop and think about it you have alot in the LORD alone.

    I hope you understand what I'm saying to you.

    Never give up never.
    Praying for you now.
    Dee50

  6. maripat

    maripat New Member

    From personal experience I recommend you to go to an AA meeting.
    When you begin having drinking thoughts you need to get a handle on it asap.
    Please at least think about a meeting.
    Good Luck and God Bless
    maripat
  7. smiffy79

    smiffy79 New Member

    please dont hit the bottle,theres no answer in there.

    you can live with fm its about managing it and not letting it overwhelm you. learn to pace your self that way you can still have a social life and look after your grandson.
    just acknowledge your limitations.

    for example i like to go dog training and in order for me to go (without crashing my car) i sleep for an hour or so on the afternoon.
    i have a house work schedule so it gets done but strung across the week.

    its limting but not fatal, stick two fingers in the air to fm it is not bigger than you and will not beat you down, by pacing your self and not taking on too much you can beat fm down.

    every body shout UP YOURS FIBROMY BLOODY ALGIA!!!!!

    loud though i want to hear you :)
  8. Yucca13

    Yucca13 Member

    Because of not being able to "keep up." My youngest two girls decided that "I just want attention." They have not spoken to me for eight months. That made me think hard about hitting the bottle big time. For years drinking was enjoyable, but now I know that I will pay dearly when I imbibe.

    Alcoholics, as is commonly known, do not metabolize alcohol in the same manner as others, so we are not happy to have one drink. There is always the desire for more - that is why drinking is so insidious for some people. I'm sure you must know that though.

    The old adage/AA slogan - One Day at a Time - seems to help some. My husband has fibro and is much pain, so I can understand about your male friends that were so desperate for relief.

    I also understand about pride - or self-worth or whatever you call it. Mine has been in the gutter many times because of feeling inadequate. I've searched and searched for help with the every day pain and I've finally found a doctor that cares and helps. I wish you the best.
    Hugs,
    Val
  9. windymountain

    windymountain New Member

    Believe me, I feel as frustrated and upset by this annoying disease as you do. But all we can do is change our perception about our lives. I find that I am still able to bring joy into someone else's life and that is rewarding. I do enjoy a glass of wine once in a blue moon, but I make sure it is one with at least some nutritive value, like a merlot or pinot noire. But as our friends here have mentioned, the answer and the comfort you are seeking in the bottle is not to be found there. It is to be found in 2 Corinthians 5:1-5
    Take heart!
  10. lenasvn

    lenasvn New Member

    It is hard to adapt to a new lifestyle. I have gotten new hobbies/ interests that I CAN do even if I'm in a flare. There's so many things I have had to stop, and I don't want to dwell on it. It will just make me miserable. Worse is that I can't do things with my children the way they deserve, they really do depend on me to give them a life. I am a single parent with abcent/ dead beat dads. When I did have thoughts of going to a better place so to speak, I just told myself to wait another day. It does turn around, eventually. You got a diagnosis, many have the syndrome/s but are still fighting to get a diagnosis, in the meantime we are ridiqculed, ignored, put down, broke and unable to work, pushed around til we eventually get the diagnosis. AA is a good idea, get out and see faces, get out of the thoughts and the rout helps. Sometimes we become our own worst enemy. And, yeah, boose will get ya sick as a d--n dog. A favorite movie at a rental place would do a better job.
  11. to our problem.You know after drinking you will feel good, but after the effects wear off you will feel worst. I know it is very, very hard to adapt to a life like ours, but we have to.Alcohol will only give you more health problems. You should look into AA, join their group. Good luck!
  12. Terry383

    Terry383 New Member

    I felt as you do - was diagnosed in 1986, almost 20 years ago. I was a zombie in pain and in fear for many years, wishing I was dead. You know what I am talking about as you explained it. I even lost the ability to read and write, along with so much pain that the hospital sent a nurse to put hot water bags that are used for burn patients on my bed.

    Enough of the negative. I will tell you where I am at now. The advantage today with having fibro is that more people know about it, accept it and the medical profession on the whole are helpful (at least in Canada). I finally found an excellent physician who is a prof of medicine at the university. He coordinates my file so that all the specialists are taken into consideration when they are deciding what to do with my life. That has been the most helpful item in my medical treatment.

    The next most helpful item was my attitude. I decided that 30 days a month was too long to feel sorry for myself, so I instituted a 'feel sorry for me day" every month. The rest of the days I worked on being optimistic.

    I searched and talked to people who had it and were improving, itemized what they said helped and came to a realization that mild exercise was a common denominator, so I started slowly, usually two steps forward and one back. I was persistent with it and after a year my muscular pain lessened some.

    I then developed what I call the "never catch anything" syndrome. After exhaustive investigation by hematologists for blood or bone cancer it was found that my high white T-cells were an 'anomaly with no pathology". Still have them never have a cold or the flu, but I have many many sensitivities and allergies.

    I could go on and on about each system in my body, but the gist of it is that with a CPAP machine I sleep better, and I am 90% improved. I have kept in touch with a few others who also are greatly improved and who were worse than I was.

    I am telling you this because there is a lot of hope out there. We who have improved our quality of life have done so with diet modification (no nightshade veggies), vitamins, multi, B6, C. E, and Omega3-6-9, and regular exercise. We are also careful to get adequate restorative sleep.

    Life is not perfect but this Fibro and Chronic Fatigue has made a better person out of me. I am more understanding of others and myself and I am more in control of my actions. I lead a much healthier life, and my friends say they like me more. I figure I have this DD to thank.

    My biggest problem today is ensuring that I get my sleep and I have severe allergy induced asthma. It does restrict my shopping as I cannot go into perfume or cleaning solution areas of stores, etc.

    Stress is a big factor, so if at all possible try to quit worrying, it just activates hormonal and chemical systems in your body that enhance the pain. It is a viscious circle.

    Sure hope I don't sound off the wall here, but I so related to your despair, I usually only read and make prayer requests. Hope this is of some hope as well as help.

    With all my heart I want to tell you all that it is doable, and many have done it also. Hugs.
  13. karatelady52

    karatelady52 New Member

    If you want to do some constructive work on this illness, there's a lot of people on this board who are finding the root causes of why they are sick -- for some its bacterial, for others it viruses and some even have both (like me).

    I just couldn't give up after 10 years of really searching and 30 years of being sick. That's when I found the Fibromyalgia and Fatigue Center.

    They treat the whole body. Our immune systems are so compromised we can barely function most days.

    For years I was told I had FM/CFS and there was nothing that could be done for me except the usual accupuncture, trigger point injections, massage, alleviating stress, light pain meds, etc.

    In just a couple of months at the FFC, they found I had lyme disease and 3 viruses -- Epstein-Barr (mono), CMV and Chlamydia Pneumonia. No wonder I thought I had chronic fatigue from the lyme and Epstein-Barr. No wonder I had so much neck and shoulder pain -- very consistent with lyme.

    Now, I'm on the road to recovery -- and its a long road and will take time but what's the alternative? I didn't want to live like this anymore in so much pain, brain fog, neurological problems and being so tired I couldn't get anything done.

    Instead of thinking of going back to drinking (which I know you know is a dead end road and a road away from the Lord -- we move ourselves away -- He doesn't), get proactive in your research. This forum has a lot of success stories if you spend some time searching.

    I will be praying for you,

    Sandy
  14. kalaya

    kalaya New Member

    Unfortunately I do know what you are going through,for me this is not just theory but real life experience and yes it can be physicaly exhausting plus mentaly and spiritualy taxing.I do not have a cure for you or some fantastic words of exhortation that will have you right as rain by morning,but without ever having met you I care that you are hurting and being beaten down on various levels by this illness and this is where in my own opinion God must be used as the life line.
    This does not imply that your pain and fatigue will be gone,only that your focus will be on a loving family member and perhaps through this you will be led to other areas of aide and comfort.
    In the bible God says 'draw close to me and I will draw close to you' and yes many things are easy to say yet much more difficult to do,so I will pray that you both will gravitate towards one another and that God will guide you and protect you mentaly, physicaly and spiritualy.And if you do drink I will suggest bottled water.God bless.
    [This Message was Edited on 12/06/2005]
    [This Message was Edited on 12/06/2005]