Facts, Fictions, and Life stories
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Hello and Welcome, my name is Esta
Within you will find information on and about the condition known as, Fibromyalgia. This site is for those who have Fibromyalgia, as a means of learning more information about the disorder and sharing your own story. Contained within, are also tips and self help for those with the disorder. As well as, information for relatives, friends and care givers.
You will find this site is a bit different than most sites you might find out on the Web on FM, for the simple reason, save for bits quoted from researchers, every single bit of it, was written by a person with Fibromyalgia. So what you are about to read, is the facts, figures and as up to date information as I can manage. But also you will be able to read about life with FM, our thoughts on treatments, medical care and more ... from a personal perspective.
Throughout the site, you will see that I generally short hand the disorder as FM, not FMS ( unless it is a direct quote from research ) ... there is a reason for that. The S is for syndrome and it has been deliberately dropped off, not only by myself, but by many others. Including many doctors and researchers who shorten it.
As the S stands for syndrome, which FM, by current medical classification is, but calling it that is often one of the biggest problems in the public mind with the disease, due to mind set it creates when many people hear the word. Please see Syndrome VS Disease, on site link, for full details on how in error this understanding often is.
There is almost a mythology if you will, that surrounds Fibromyalgia. If you have read many sites on it at all, you have seen over and over that it is often called, "mysterious", "perplexing" , or "baffling" or "poorly understood"... I think you can see the trend here. In short, most consider it a great big question mark that defies explanation and therefore ... to be blunt, they often don't bother looking for an explanation.
The same goes for calling it, incurable. As long as it's thought of this way, so it will remain, as there is no incentive to find a cure for it. So, calling it any of these things, is not only not helpful, it's counter productive to finding answers.
The fact is, it's not such a huge question mark. There is plenty of research and therefore, explanation for it. Considering it a incurable mystery is yet one more way of, quite bluntly, avoiding doing anything about it. Thankfully, not everyone feels that FM is some great untold mystery that cannot be solved and have made the reverse assumption and researched accordingly.
On this site, I have made a point to share some of that research, with you the reader. You will find quite a bit of rebuttal for what you might typically see on most Fibromyalgia sites and that is deliberate. As most such sites, even if very well intended, do tend to propagate a great deal of misleading information, that is often very out dated, and/or whose base line research, has long since been refuted.
I have made considerable effort, not to repeat that error here, with many out links for you to go read the research and findings, for yourself. Please see the links page on site link, for all the references, in one place.
Anything that is not defined by research, is my personal prospective, or thoughts on the matter. A prospective that is based on 20 + years ( from date of diagnosis ) and well over 25 years, of real life experience and extensive personal study.
It is almost impossible to explain Fibromyalgia in brief, which is the one thing that is often said of it, that is true. That being, that it is complex, therefore, I won't even make the attempt to outline it here on the front page. But I invite you to read on and make the discoveries yourself and I hope you find my missives, enlightening.
This site will be updated, as new information becomes available, and I have the energy to write it :)
The information in this website is not intended to be medical advice, or as a means for diagnosis, you use any/all data, or suggestions, at your own risk