Why All The Confusion?

Lady Gaga recently told the public that Fibromyalgia is the chronic pain illness that she has been dealing with in recent years. As I read through some of the comments, I noticed that most of them said “get well soon!” Now these comments are sympathetic and well meaning in nature, but they also show that there is a common misconception about this disease. It is not a cold that will pass or a broken bone that will heal. There is no cure for fibromyalgia. It is a disease that one must wrestle with for the rest of their life.  But it doesn’t stop there.

I was recently reading a blog about this same announcement from Lady Gaga, and the comments that this writer found were of a very different nature. Not only were these comments harsh, but they were down right mean and hostile, insinuating that she was either faking her condition for attention , or blowing it out of proportion, because how could she do the things she does if it was that bad? This is so saddening on so many levels!

So why is Fibromyalgia so misunderstood? What is Fibromyalgia? Is it even real?  Yes, Yes, YES! Fibromyalgia is real!  Not only is it real, but it’s been around for over a century. But don’t take my word for it. In 1992, the World Health Organization recognized it as real and included it in its report on the classification of diseases (more precisely, the 10th Revision of the International Statistical Classification of Diseases and Related Heath Problems.)  So why does it seem like it is a relatively new disease? Perhaps even a made up disease to validate hypochondriacs and get them out of the doctors office? Well, have you ever heard someone refer to having rheumatism? They will probably be from an older generation and the reason for this is that Fibromyalgia has had several names over the last century and only been known as Fibromyalgia Syndrome since 1976. Now admittedly my info on the previous FM names (Rheumatism and Fibrositis) previously came from a book that did the leg work for me in terms of research and connecting the three names to the same illness. How do I know this to be true? Well the research of a doctor much more learned than myself, and if that was not enough, the WHO also classifies Fibromyalgia, Rheumatism and Fibrositis as one and the same in their report on disease classifications.

Okay, so if this is a real disease, then why all this confusion? At least partially to blame, in my opinion,  is that many doctors don’t seem to have a sufficient handle on the condition. For instance, every accepted theory on FM that I have come across, agrees that FM is not inflammatory or autoimmune in nature, yet my GP did not know this, and tried to explain a high inflammatory marker on FM. What?! Part of diagnosing FM is ruling out other possible diseases and how can any doctor do that unless they know what it is and what it is not. Now why these board certified doctors don’t understand widely accepted aspects to a disease that affects millions of people is beyond me. Guess they are able to swept it under the rug of practicing medicine and move on…oh vey!?!

Now if the medical community has a deficit in its understanding of FM, then think how vast that deficit  is throughout the general community. Goodness knows, renaming a disease, not once, but TWICE, will also have its own negative effects on public awareness, but the commercials for FM drugs don’t help either. “Fibromyalgia is thought to be cause by overactive…” Yada yada. The thing that is introducing most people to this disease is also instilling the thought that we don’t know anything about it but here, buy our drugs!  Little disclaimer, I couldn’t find  a poll listing how people first heard about FM, but I think it is safe to say, or it is my opinion at least, that how ever the public has been introduced to FM it was not in an educational or effective manner. The reason I say this is because so many seem to (a) not know what it is at all, (b) think it is a fake/wastebasket diagnosis or more mental in nature, or (c) think it is no big deal and we all are just complaining or looking for attention.   Most individuals that have any real idea of what FM actual is, are either themselves suffering from FM or is close with some one that is.

Now the controversy over Fibromyalgia seems to boil down to a lack of knowledge and compassion that leads to various forms of doubting FM sufferers. It’s okay to to not know about something. Gracious! In all my education, the biggest thing I learned was how much I don’t know! Friends of mine have not always known what FM is but because they are compassionate people, they asked about it with an open mind, willing to learn! The problem is not having all the facts and calling someone a liar or a fake. The problem is telling someone there pain doesn’t matter or that it can’t be real, that it must be in their head. The problem is not caring enough to try to understand. And believe me, doubting those in pain is a problem! It’s bad enough to be in chronic pain, or have a chronic illness. It is even WORSE to have to prove it to people that it is a debilitating problem.  Can you really say that 2-4% of the population is actually only imagining that they are sick? It is said that roughly 10 million people in the US suffer from Fibromyalgia, but then I guess we are all just confused, right? Wrong!

Science and medicine have yet to prove exactly what causes fibromyalgia, but that does not disqualify it from being a valid medical issue. Nor is it disproved due to the current lack of a definitive diagnostic test. The medical validity of migraines are not questioned yet their cause is also unknown. There is no test that is done to prove that you have experienced a migraine nor how bad its severity, yet migraine sufferers are not questioned like they are on trial. So why the double standard? As the CDC reports on its website, “Fibromyalgia can cause pain, disability, and lower quality of life…If you’re a woman with fibromyalgia you may have 40% less physical function and 67% less mental health.”  And that’s not even all of the possible complications. Yet on the same page it also claimed that “Fibromyalgia can be effectively treated and managed with medication and self-management strategies.” Maybe I expect too much, but a 40-67% decline in my overall health doesn’t seem very effective to me.

I hope it is clear why there is so much confusion about FM and sometimes even heated controversy. Now, if you will indulge me, I’d like to share some of what I have learned about FM theories, treatment options and some other thoughts.  I have struggled a lot over this post, writing and re-writing and debating how in depth to go…. I’m gonna tell you about the main theory which is used by probably the majority of the medical community, and the theory that my FM specialist has cultivated across approx 55 years personal research and observations. OF course, there are all the holistic approaches that can encompass either just the way to health or cause and cure. For so many of these people, gluten free is the way, or anti-inflammatory diets, or any one of dozens of new fad health crazes which all promise to cure you of anything from the common cold to cancer it seems……I digress but I will not include any of these holistic approches, because one, who’s got time for that?! And two, regardless of the illness, it seems that these approaches are kind of self explanatory anyway…  okay, so here we go.

Following the mainstream medical community’s theory on FM along with the American College of Rheumatology, the Mayo Clinic, and the Center’s for Disease Control and Prevention: Fibromyalgia is a “neurologic chronic health condition” that can cause the following symptoms:

  • Widespread pain
  • Tenderness to touch or pressure affecting muscles and sometimes joints or even skin
  • Severe fatigue
  • Sleep problems (waking up un-refreshed)
  • Problems with memory or thinking clearly
  • Depression, anxiety or other mood issues
  • Headaches
  • IBS
  • GERD
  • Pelvic pain
  • TMJ

This theory basically pegs FM as a Central Pain Amplification disorder that is  triggered by some stressful event, along most likely with  a genetic component, but NOT an autoimmune, inflammatory,  joint or muscle disorder in nature. They also state that there is no cure and the only treatments are drugs for symptom management (that don’t always work, if at all) and general good health practices like a healthy diet, exercise, stress management and coping strategies though CBT or Cognitive Behavioral Theorpy.  That will still leave you with a health deficit of 40-67% according to the CDC>

Thankfully there is another theory, and this one comes with a treatment plan that works not just to manage symptoms but to actually reverse the diastase itself.  As I mentioned in my previous post, I was introduced to Dr. Paul R St. Amand, whose work in the field of Fibromyalgia spans decades and whose observations led not only to a plausible theory but a treatment protocol that has helped thousand of patients (if not tens of thousands) reverse the debilitating symptoms of Fibromyalgia and truly manage this lifelong disease!

This theory of St. Amand’s is the culmination of almost 60 years in the field, or rather, the trenches, of Fibromyalgia. You see, Dr. St. Amand and many in his immediate family also have fibromyalgia, so it is easy to see why he would have such a personal stake in finding real answers. Back in the 50s, before the term Fibromyalgia was even coined, St. Amand observed among his patience  that “there existed a prevalent, unidentified, unexplored, but very real disease.” After one thing and another, St. Amand started to treat these patients with gout medicine to help the body expel the build up that was causing system wide havoc.  Gout meds do come with side effects so in the 90s he switched to Guaifenisan and it has proven to be just as effective and has no side effects!

But Ronni, you skipped to the treatment without really talking about this other theory?! Kinda… You see I have not only read this doctor’s website, but his book that he wrote detailing his journey of discovery, his theories on the disease and his treatment protocol. So, trying to figure out how to give a complete picture without writing a novel has been difficult for me, so I’m kinda going backwards. Here is his theory on FM in short, and in his own words:

“We now postulate that a defective metabolism, possibly a kidney enzyme, forces a minuscule retention of phosphate, which gradually accumulates to detrimental levels in many tissues. The excess results in inadequate energy formation (ATP), cellular fatigue and other malfunctions that explain all the symptoms of fibromyalgia.”

In other words, there is a problem in the body, either in the body’s metabolism and/or with the kidneys, that cause stuff to build up in various tissues that shouldn’t and that is what causes all the various symptoms of FM. Also, his list of possible symptoms is larger than the other theory.  (See I kinda said the theory before it was just really hidden.) If you want the details, his book is fantastic! It also gives many details on the aspects of his theory that have already been proven, other studies done that support the rest of his theory, and countless tesimonials from patients. (ANNNNNND shameless plug for his book.)

The best part of this protocol is that there are patients that have been following it for upwards of twenty years and they are still living full lives. The treatment didn’t help for a bit then leave them hanging after a short respect, and the reason for that is that this treatment address the issue at hand not just the symptoms. If you don’t need want to read an entire book, you can go to this doctor’s website to read countless success stories from is patients.  An aspect that also sold me on his theory (other than it just made sense) is that St. Amand does not have ulterior motives, he simply wants to make people feel better and to find out more about the disease so that it can be fully understood and hopefully easier to diagnosis and treat in the future. You see all money made from his practice (that is not used to keep the lights on) goes to fund research that is being conducted at City of Hope on FM, and his book tells you all you need to know about his treatment protocol so that those who are unable to see him to still benefit from his protocol! The medicine used is over the counter thus no incentives for him except to see his patients succeed.  St. Amand has treated over 10,000 patients in his decades of practice and cares about you getting your life back.

Fibromyalgia is a very real, and often, very debilitating disease that can completely over take your life.  Only one option even claims to reverse this disease in its tracks, the others are just proverbial band-AIDS that may or may not help. So even though St. Amand’s protocol is not for the faint at heart and not widely accepted, why not do both? Try to reverse the disease AND do what you can to ease your symptoms in the mean time? Even if it is just a Hail Mary, can you really afford not to take a chance with it? Can you afford to not seek out and try every available aid? Because this is not a game, it’s your life. The quality of your life with your family, your relationships with friends and coworkers, your ability to do beloved hobbies and daily chores.  Are you really willing to gamble all of that?

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