I know this is a terrible thing to even think about, BUT...

Discussion in 'Fibromyalgia Main Forum' started by ayhatch, Jan 1, 2007.

  1. ayhatch

    ayhatch New Member

    I'm curious as to the "survival rate" of Fibro patients. That is, taking into account that symptoms progress even though you try to ease them. What is the average age that a person will live to with this condition? (Worst case and best case scenario.)
  2. LostHearts

    LostHearts New Member

    I have always thought of diseases such as Fibro, Chronic Fatigue, RSD etc. as potentially fatal conditions. How long one can survive with them is no doubt a highly individual matter.

    Besides the pain, the utter exhaustion and the nearly total loss of everything that made the victim the person that she/he was, it seems that these conditions have a high rate of suicidal ideation/attempts/successes.

    Unlike "fatal" diseases, I have often thought that these invisible diseases sometimes force a person to seek to end their life. It's like they are fatal, but force the sufferer to do the dirty work.

    Any disease that is so bad to drive a person to try suicide is, in my mind, a fatal disease.

    The question remains as to how long one can go on suffering and living with the fact that their hopes, dreams etc. are probably gone forever. I've been living with continuous worsening of fibro, RSD and CF since 1992. How much longer can I go on? I have no idea. It is a subject that is difficult to think about.

    Your question is an excellent one that has crossed my mind as well. How to obtain an answer is quite difficult. Hopefully others will have some idea as to how to figure out if there even exists any quantitative data or even if research has actually been done on this subject.

    The excellent book about CF, STRICKEN, addresses these personal feelings and the question of survival. When you come down to it, I believe it is a personal matter that involves a number of factors--length of time, how bad it gets, etc.

    Thank you for asking such an important question that certainly is thought-provoking. Sorry I cannot provide you with concrete data.
  3. ayhatch

    ayhatch New Member

    That's okay that you don't have concrete data...
    your message was one filled with honest and pure heart. I truly appreciate your point of view. I know that it is a positive attitude that will be my salvation.
    I just have to keep at it...
  4. Catseye

    Catseye Member

    I tried to look that up once, back when I thought I was dying. About the only thing I found was that cfs people usually die of "organ failure" and that cfs would not be listed as their "cause of death".

    But if you consider that fact with another, that we know we all need vitamins, minerals and amino acids to survive, then why do we not hear of anybody dying from an amino acid deficiency? Certainly someone has died who had too little of one of these vitally important chemicals, but why has it never been called that? It's probably listed as "organ failure". This means we can die from malnutrition and it be listed simply as "organ failure". When I realized this is when I realized that people are, in fact, dying from malnutrition. We just haven't heard it called that. I'm willing to bet if cfs people are dying, it's from malnutrition.

    I feel really good when I load up on nutrients. I'm making it a point not to die of "organ failure".

    karen
  5. LostHearts

    LostHearts New Member

    I'm happy that you have come through all the difficulties that you list. Personally if I did have to do a regimen where I had to take certain things to survive, at least it gives one a measure of control. With these conditions, there is no way to grapple with it when everything has been tried and has failed.

    I am now almost bedridden, and don't know from one month to the next if there will even be a roof over my head. My exercising days are long over; it was something I loved and to vegetate like this is the pits.

    I'm just saying that if one has excruciating pain that goes unrelieved despite all attempts to ease it, the quality of one's life becomes an issue, and this of course will impact on how long one can go on.

    About statistics, drug overdose (the most popular method of females) is listed as "cause of death" on death certificates when actually it was the unbearable conditions that were the real cause. But these will never show up as such, so it is almost impossible to ascertain with any certainty how long someone has survived with the disease(s).

    Again, severity of disease, social support and other factors will go into length of time one can exist under these conditions, so it is indeed a very personal thing.
  6. springlakeorphan

    springlakeorphan New Member

    Thank you so much for opening this topic. I often wonder if there are any stats.
    I will follow this closely to see if anyone has any concrete facts.
  7. lenasvn

    lenasvn New Member

    Maybe it would be fatal in a sense if a patient came to the ER and the symptoms were dismissed as "only FM or CFS" when in fact it is something else, sometimes serious?
  8. Slayadragon

    Slayadragon New Member

    My grandfather almost certainly had CFS, even though it wasn't identified as a disease until long after he died.

    He got adrenal cancer (which then spread) and died at age 76 (in 1984).

    Adrenals tend to be a weak spot of CFS, of course.

    I tend to think that there is some kind of virus that weakens the adrenals and eventually (maybe in 50-75 years.....he was sick since age 20) causes cancer.

    This is the same thing that happens with Hepatitis B. Liver function is decreased, and liver cancer is increased by something like 200x (not 200%) when it's present.

    Still, age 76 was a longer-than-average life for a man in the 1980s.

    Personally, I'm more concerned about quality of life than quantity of life. It would be even better to have both, of course.