Valerie

Hi Hope and welcome to the board! So sorry to hear about your concussion and FM diagnosis!

It seems that if you have some kind of underlying condition that has similar symptoms to FM, then if you can fix that underlying condition, such as a thyroid problem or severe candida overgrowth, then you get rid of the symptoms. As Rachael (Ciocc) and Kim and Gary and many folks here can tell you, the search is often long and difficult because there are so many possible causes of these symptoms and not all of the tests are good and few doctors are aware of all the possibilities or how to go about testing for them. That's why you will keep reading here that it is important to keep learning and pushing your health care providers and take primary responsibility for your own health care, including seeking specialists, changing docs, and so on.

I will go on my guaifenesin bandwagon again and tell you about a dr. who has developed a treatment for FM that doesn't cure it, but that puts many people into remission from their symptoms. Dr. St. Amand is an endocrinologist who began treating patients having FM symptoms with gout drugs (uricoserics) about 30 years ago. The patients improved. About 10 years ago, he discovered that guaifenesin, an expectorant that has been around for a long, long time, also puts people with FM into remission with fewer or no side effects compared to the gout drugs. He isn't sure exactly why it works, but his theory is that people with FM have a genetic predisposition to this. He observes that some people have the symptoms from birth, while others develop them after some kind of traumatic event, such as your concussion, or a car accident, or a very stressful life or health event, such as having children or going through menopause or losing a dear one or divorce. He believes that the genetic weakness prevents the kidneys from excreting the excess phosphates that are produced as a byproduct of basic cellular metabolism. The body doesn't allow the excess phosphates to remain in the bloodstream, so they are stored in various sites all over your body, which is why the symptoms of FM are so many and varied and why so many body systems are eventually involved -- as the phosphates build up. Because there are excess phosphates in the cells where they are stored, it disrupts the action of calcium and messes up the Krebs cycle, with the result that the mitochondria in those cells fire and fire, until they become exhausted. He calls FM, MPS and CFIDS "dysenergy diseases." The guaifenesin (or the gout drugs) sits on the receptors in the kidneys that aren't working to remove the excess phosphates from the bloodstream and allows the kidneys to function correctly, so that the excess "stuff" is scoured out. Over time, the excess phosphates that are stored in cells all over the body are pulled out, back into the bloodstream, and then excreted. As the cells are relieved of their burdens, the mitochondria begin to work properly again, which means that your energy comes back and all the symptoms eventually disappear. Guai is not a cure for FM, but is something you need to continue taking in order to keep the phosphates from building up again. But many people who take it literally get out of their wheelchairs, go back to work, and resume normal lives.

The "catch" is that the reversal process causes your FM symptoms to be exacerbated. At first, just about everywhere you have stored phosphates is involved, so you may experience every FM symptom you've ever had at once. Then, the guai seems to concentrate on particular areas in your body, and you will have symptoms in those areas as they clear. It seems to work on one area at a time, so you will have pain in your back, for example, for a few weeks or a month or so, and then it will suddenly stop, you get a few good hours, days or weeks, and then it will go to work on another part of your body. Over time, however, this "cycling" eventually stops and you just have the symptom-free state with energy and it's over. The longer someone has had FM and has been storing phosphates, unfortunately, the longer it will take to reverse and the more "cycling" they will have to go through. Dr. St. Amand has treated over 3000 patients with guai by now, and it does seem to help most of them.

So, this is a long answer to your question and I'm sorry. But since you are new to this dd, I wanted to tell you about it because it might work well for you without alot of cycling and symptom exacerbations!!

Take care,

Val