Fibromyalgia Support Group
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The post on Hashimoto's and the responses made me think about this and i want to know what everyone thinks. Here is a way to look at fibro. This speaks to Maika's point that people differ on the best way to understand things, to Leo 's point about symptoms, and to the well made point that fibro is a syndrome, not a disease.
I think of what causes fibro as a Monkey Wrench that hits us and depending on where it lands/how hard it hits/when it hits in our lives/whatever, it messes up those specific systems. So some people are more severely affected in their digestive system, others have more endocrine problems, others have more immunological problems, and so on.
However, there do seem to be some commonalities. I think that all or most everyone becomes much more sensitive than is normal (sensitive = pain). To me this means that something like "a bad back" bothers us much more than it does others. We go to the doctor and walk out with a diagnosis of degenerative disc disease. It doesn't mean that fibro caused it. It means that we became aware of it because we are so sensitive.
How does this sound? Anything you would add or modify?
I think of what causes fibro as a Monkey Wrench that hits us and depending on where it lands/how hard it hits/when it hits in our lives/whatever, it messes up those specific systems. So some people are more severely affected in their digestive system, others have more endocrine problems, others have more immunological problems, and so on.
However, there do seem to be some commonalities. I think that all or most everyone becomes much more sensitive than is normal (sensitive = pain). To me this means that something like "a bad back" bothers us much more than it does others. We go to the doctor and walk out with a diagnosis of degenerative disc disease. It doesn't mean that fibro caused it. It means that we became aware of it because we are so sensitive.
How does this sound? Anything you would add or modify?
I think we're going to have that one of these days. We'll still have what we have but it will make more sense and understanding will lead to better treatments.
Actually I like the concept you are conveying about causation. I just couldn't help but express my frustration that we are having to experience this at all.
I too look forward to the day when genetic testing is a common practice. I think so many illnesses/conditions could be prevented or caught before getting out of hand.
Some get lucky and find that needle in the haystack that helps them, for most of us that is not the case.
I have just been referred to the women's college hospital (18 month waiting list) they will be doing environmental and genetic studies on me (at least that is my understanding)
My sister and brother have both recenlty been diagnosed with fibro. My sister after a car accident like me, (mine was an accident and near fatal allergic reaction to dilantin) and my brother after a very stressful time (my niece was born with down syndrome with severe physical problems) she flatlined several times in her first 7 months of life and had open heart surgery twice as well as several other surgeries.
I am rambling...my point is I am hoping that I will be a useful guinea pig in them figuring what the heck is making us feel like crap! lol
It's like all the neuros seeking a "WHY" for myepilepsy. The smartest one, at Massachusetts General Neurology (one of the best in the country), simply said< "We're not smart enough yet to make a test for whatever it is."
That's how I feel about FM. We'll figure it out... till then, remember that until the relatively modern era, physicians thought the uterus wandered the body and caused ailments! Who knows how our great-great-grandkids will see health care and medical science of today?.... They may laugh as hard as we do at the wandering-uterus theory. (Or be as disgusted!)