I can totally identify with what you're feeling this morning. One of the hardest things for me is the pain and disturbing sensations that have no explanation. Last night I was up late with chest pains. And like you said I know that my heart's ok, had an encephalo cardiogram a few years ago that showed everything is okay besides a PVC (premature ventricular contraction). But it still worries me. And I know doctors think that because they tell you that the pains you are having are not because something is wrong with your heart/kidneys/bladder etc. that you should just "get over it". But pain is a signal from your body that something is wrong, right? I mean, that's the whole point of pain; your body is saying "hey, you need to pay attention to me!". So you're stuck in this position where you have this constant back ground noise of your body sending you signals, and you're supposed to learn to just ignore it. Which I am good at doing some of the time (I've had the pain for about
15 years now, steadily getting worse), and other times I fail completely and I can't stop thinking and worrying about
what feels like an impending heart attack or kidney failure and it put's me into a tailspin as I go to that place in my mind where I think "they'll find me dead of a heart attack at 31, and then they'll realize they had it wrong!". Pain is a vicious enemy to have to fight on a daily basis, I always say that it is absolutely demoralizing!
And you're right it's NOT just the pain (so many people who don't have fibro don't realize this); it's feeling totally sick; l compare it to when I was a child and you wake up and you know you have the flu and you cant go to school. It's a whole body thing. It doesn't make any sense! I have found a few doctors and theories that seem to get it right (I'm a biologist so for years I've been researching possible fibro causes and treatments) but usually they just have what seems to be a piece of the puzzle; we are still waiting for a comprehensive explanation and an effective, affordable and widely available treatment.
I am overwhelmed with you. It's not just the debilitating symptoms, it's those symptoms plus the fact that the people in my life (including my doctors) have no idea what's going on. Sometimes I actually wish I had MS or Lupus or any disease that is understood to the point that the community makes accommodations for sufferers. I'll share something that gives me hope: "In the early days of polio...before a blood test was developed, some physicians intimated that the children on iron lungs were simply having a psychosomatic illness, The same thing occurred with Lupus, even though many women died of the disease. Indeed, relief came for lupus sufferers only when a blood test was developed. The same thing is now occurring with CFS (Chronic Fatigue Syndrome) and fibromyalgia. Fortunately, the CDC and the National Institutes of Health, the two main governmental agencies responsible for CFS and fibromyalgia research, are now getting more serious about
making it clear to physicians that these are very real and devastating syndromes--and not simply psychosomatic. The CDC is spending millions of dollars in advertising to help correct mis-impressions about
CFS and to educate both physicians and the public about
how real and devastating these syndromes are. The recognition is coming just in time, as the prevalence of these syndromes is skyrocketing." (Jacob Teitlebaum M.D.) That puts it in perspective for me: maybe we're not suffering pointlessly. Maybe we are the poor warrior souls that have to endure an illness in the time before medicine has an answer. It takes extra ordinary courage. But imagine that day in the future when science finally discovers the cause and we get the respect we deserve! Let's all keep our hopes up and focus on making that day a reality in whatever ways we can! And Sheila, thanks for complaining