Join Date: Feb 2006
Re: Something I still don't understand...
The bottom line is no one can honestly tell you what your final destination will be. Listen to YOUR body and follow your intuitive judgment on what YOUR body is telling you IT needs.
Each individual has only their own personal experience to go by, and can share only what they have experienced. That does not mean their experience is the final destination for everyone. For me I had several intermittent bedridden/wheelchair experiences that I recovered from before it became medically determined *fixed and permanent*, a condition I have had lasting for 2 years. Though doctors have determined it is fixed and permanent, I have still not accepted that, and I am fighting back against it with the Guaifenisin Protocol treatment.
As for doctors saying it is not progressive. They have said that for years, but they are now learning different. Yes, you will find it still written and stated in accordance with *old school* thought (Note the dates on the books and articles). Two of the Kevorkian cases were FM patients in their early 40s. I don't think people make decisions like that because they weren't experiencing progression. All they have to do is read these message boards and the actual experience of those of us who have had severe symptoms for 15-20 years or more.
Dr. St. Amand, as an Endocrinologist, states it IS progressive. And, he firmly believes that science will eventually prove that FM is in fact a precursor to many other diseases. The biology of it is complex and can't be explained in message board post, at least not with my FF.
FM is an energy (ATP) deficiency disorder. It causes dysfunction in other body functioning areas, like the Central Nervous System. It is the cause of all these strange symptoms we experience. Events and activities that deplete your body’s already limited ATP reserves causes and worsens your pain, flares and fibrofog.
Unquestionably there are many differing opinions and theories about the cause of FM; however, NO ONE disagrees that stress/trauma/injury makes it worse. That is written everywhere----think about that. It takes huge amounts of ATP to cope and recover from stress/trauma/injury. Therefore, it is really critical for us to not overextend and overexpend our limited ATP.
As to why there are differences among us? Part of it is that someone diagnosed only 5 years ago is going to respond differently than someone who was diagnosed 15+years ago. And, even among the same year range folks, bodies are different. Our bodies have differences in ATP levels, and ATP is what determines how we handle pain and recover from flare episodes. Secondly, differences are determined by how we respond AFTER the flare. Some, like Bluelake lady, were smart enough to learn early and she started managing her life different and now seems to live a full great life. Unlike me, the workaholic perfectionist who just kept stupidly pushing myself beyond my body's limits. THAT is a KEY difference. You can be like Blue or end up like me, but it means making different choices in how you manage your life.
The only way to manage your FM is get in touch with your own body's ATP recoverability and modulate your activities accordingly. I didn't do that. And, now I am *fixed and permanent* disabled.
If your activities are putting you into flare you are exceeding your ATP capacity and putting yourself at possible risk. If your bad days are now outnumbering your good days or you no longer have good days, listen up----you ARE headed for serious trouble and MUST make change NOW or risk the possibility ending up disabled like me.
Use and manage your ATP level like a bank account. Don't write checks that your body can't cash. A lot of people don't manage their cash very well, and it is quite likely they won't do any better with managing ATP levels. Its all free will and personal choice of responsibility. Dance today and don't worry about tomorrow. Sorry to seem so blunt, but everyone deserves a good full ride of quality of life so you can enjoy your life and your family.
All we can do is share our various stories and experiences. After that, each person has to make personal choices about how to use that information, if at all. Just know that not responsibly managing your risks now is like playing russian roulette with your future. I sure wish someone had told me all this years ago as I would like to think I would have made MUCH different choices along life's journey.
I am 57, and though I have had substantive symptoms since a child, I wasn't officially diagnosed until 15 years ago. By then I had already experienced temporary bedridden experiences lasting from a few days to a few weeks with each lasting a little longer than the last. Then it started happening more frequently and lasting longer periods of time. This last time it has lasted more than 2 years, making it determined to be *fixed and permanent*, but as I previously stated....I am not accepting that and I am fighting back. I am NOT letting this damned disease rob me of my life. Just because I stupidly did not protect myself from getting like this does not mean that I am not smart enough to figure out how to back myself out of it. Dr. St. Amand says it can be done, and I believe him. Unlike all other doctors I have seen, he rejects that I am *fixed and permanent*. I believe that with the Guaifensin I can get the excess calcium phophates out of my body. I already see it in my urine and already experience pain relief in certain areas, so something is very differently improving.
Apart from the above things, you can also do things that will help you build ATP. And, that will help you endure pain, flares, and reduce fibrofog. There are things that will increase your ATP; e.g., specific supplements, certain foods, all exercise, and deep breathing exercises. That is why Sam-E, Malic Acid, Magnesium, COQ10, all help. And, ole Popeye was right about spinach, lol, it increases ATP. Walking, Yoga, & Meditation....all will increase ATP.
Don't wait until you get like me to have to fight your way back. Develop your plan and do something now. Today truly is the 1st day of the rest of your life. Make better choices, starting today.
Ok, lol, stepping off my soap box now <wink>
Last edited by jam338; 11-17-2007 at 12:55 PM.