Fibromyalgia: Every Body System is Affected

"We believe there is a genetically defective kidney enzyme, which causes phosphate retention to accumulate to critical levels within cells. This interferes with energy formation, a substance called ATP, and to a malfunction in susceptible tissues. Excess phosphate induces calcium retention, and together they cause all of the manifestations of fibromyalgia.  Fibromyalgia would be more appropriately named Dysenergism to better describe the overwhelming fatigue and the metabolic disturbances throughout body tissues."    
~ Dr. St. Amand, practicing medical doctor in Los Angeles, CA who stumbled upon the reversal treatment for Fibryomyalgia/Chronic Fatigue Syndrome

For years, I've had one issue pop up after another.  I thought... it was just because I worked in an office environment in a sedentary job, I didn't exercise enough, I have 2, 3, 4 kids, I "do too much", I attend births in the wee hours of the night, I should have eaten more protein in pregnancy or hydrated better, it's pregnancy's fault, no, it is breastfeeding's fault.  I'm here to say, it sometimes takes us many years of suffering various conditions and recurring issues with a symptom big enough and painful enough to grab our attention, SHAKE US, and proclaim, "there is something really wrong with you!"

 No one wants to have anything medically wrong with them that is serious.  No one wants a terrifying, depressing diagnosis.  No one wants to suffer with chronic illness.  But, sadly, I do.  :(

As I'm writing this, my cousin on my mother's side of the family writes to tell me there are a few suffering with this condition in our family.  I suspected but didn't know anyone was diagnosed.  I'll have to get more info so I can understand my family history of this illness more.

For now, I'm going to attempt to remember (see the letter B above for why I say "attempt") all of my symptoms and issues to-date:

• Chronic fatigue
• Insomnia
• Restless legs and arms
• Muscle and joint pain in legs, arms, toes, fingers, back
• Feeling that I'm elderly and near death's door
• Anxiety, history of panic attacks
• Getting really hot but when I'm cold feeling super cold
• Chronic infections (yeast, mastitis, pneumonia, bronchitis, colds, stomach flu, etc...)
• Chronic low back pain before children
• Short-term memory loss (getting worse)
• Inability to focus and concentrate to finish a project efficiently or even a sensible conversation
• Post Partum Depression twice, other low points in life some caused by traumatic events
• Stress of being a busy mother of many, wife, running a household and finances, involved in organizations, work, studies
• Skin problems - new places popping up out of no where
• Low energy - hard to exercise when it makes me feel worse or exacerbates my low back issue
• Flu-like body symptoms following too much exertion like painting a room, day at Disney that takes 2 days to recover from the immense pain especially in my feet and legs
• Muscle weakness making daily activities hard like washing hair, brushing teeth, lifting baby, holding baby to breastfeed, changing the channel - the weight of the remote, typing, handwriting, knitting, driving - holding the wheel for long periods
• Digestively: stomach upset after eating, gas, bloating, nausea between meals
• Diagnosed in my mid-20s with Irritable Bowel Syndrome
• Diagnosed last month with dairy/egg allergy resolving a lifetime of constipation and regularity issues.
• Easily irritated due to the frustration of the above symptoms and any minor amount of stress
• Apathy at times feeling like giving up then determined at times to find a solution

Every part of my body feels dragged into this symptom nightmare.  In pregnancy with my fourth, I even had high blood pressure (from 90/60 to 130/80 with some bad days in the 140/90 to 148/101 range but thankfully not that last week), diagnosed with proteinuria using 24-hour urine test, diagnosed with hyperuricemia, had pitting edema, gained the most weight ever (so much was retained fluid!), and the metabolic panel showed changes but thankfully the liver enzymes though elevated were not outside of the normal range.  This all came to a head a few days before she just plopped out in one hour of labor making induction talk moot.

I refuse to give up searching for ways to reverse, eliminate, or lessen all of the above symptoms.

I want my life back.

Closer to My Inflammation/Pain Cure! What's Fibromyalgia Got to Do With It?

A week ago this time, I was reading up and researching inflammation.  I wanted to know everything I could about it and how to minimize it or even cure it!  Friday, June 22nd, God put a thought into my head to see what was on the Health/Auto-Immune bookshelf at Greetings & Readings in Hunt Valley.  I stumbled across what is the best kept secret in medicine today.  How to REVERSE Fibromyalgia!!

Fibromyalgia - the "Catch-All" Diagnosis or Is It?

After I picked up Dr. R. Paul St. Amand's book, and read through a few pages in the store, I was WOWed!  I immediately purchased it, and as of 4AM today, finished reading all 300+ pages of it!  Fibromyalgia is more than what you think it is and more than what I thought it was.  Most doctors, pharmaceutical companies and Fibromyalgia sufferers and their families believe this just causes painful muscles and joints. Dr. St. Amand explains that it is so much more!

Fibromyalgia (FM) symptoms include fatigue (especially chronic and severe fatigue), irritability, nervousness, depression, insomnia, impaired concentration/focus "FibroFog", impaired memory, anxiety, hunger tremors, palpitations, panic attacks, frontal headaches, occipital headaches, general headaches, dizziness, vertigo, eye irritation, nasal congestion, abnormal tastes (bad, metallic), ringing ears, numbness, restless legs, bloating, constipation, diarrhea, dysuria, pungent urine, bladder infections, vulvodynia, weight changes, itching, rashes, sensitivities (chemical, light, odor, sounds), and allergies.  FM sufferers also have chronic infections, skin rashes, itchiness, digestive upset, some have been diagnosed with Irritable Bowel Syndrome, some lose their hair, and the list goes on...  As you can see, the name Fibromyalgia isn't a good name. It means pain in the muscles/fibers.  It is so much more than that!

You may be treated right now for these conditions separately by more than one doctor.  This is how so many millions of sufferers go without treatment.  They don't realize they really have one condition causing all of these things!  Especially because your body goes through cycling - good days and bad days with flares then a period of remission or at least days that are better than your worst days.

FM is genetic.  Parents, siblings, grandparents, nieces, nephews, aunts, uncles - someone in your family suffers from FM whether properly diagnosed or not if you are a FM suffer.

FM can start in young children.  Children today diagnosed with arthritis or ADD might simply suffer from FM.  Most doctors wouldn't think of FM because it is such a confusing condition to many. (There's a whole book on this if you want to know if your child might be suffering - What Your Doctor May Not Tell You About Pediatric Fibromyalgia by Dr. St. Amand.)

FM has no diagnostic blood test (yet!!) but Dr. St. Amand and his team are very close to making that happen!  When that happens, finally, family doctors and rheumatologists can test patients blood and know right away what the problem is - Fibromyalgia. They have already proven with research that proteins in our blood are increased for FM sufferers.  This diagnostic tool will make lives change forever once it is finally fully developed and in use!

Another way to confirm FM today is to do "mapping" of the body to find the lumps and bumps in your muscles that show you do indeed have FM.  This can be done by a chiropractor or massage therapist or someone trained in how do perform mapping.  (Your provider, if willing, can even learn more about FM and mapping by purchasing Dr. St. Amand's CD on how to do perform mapping.)

How Many of the Below 18 Points are Tender on Your Body?

What is the Reversal Treatment Plan by Dr. St. Amand?  More Prescription Drugs?

No, not prescription.  Not drugs with dangerous or frustrating side effects.  Dr. St. Amand discovered that Guaifenisen, an over-the-counter medication in doses of 300mg or 600mg or 900mg or 1200mg twice a day will reverse your symptoms of FM!  The dosage depends on how your body reacts to the lowest does and if in time, that isn't producing the reversal effects desired (more pain before less pain), then the dosage is increased until your body begins to respond - you feel worse.  After so much time feeling worse, you'll finally feel amazing!  You'll have good days like you haven't known in years.

After all, you cannot forget that every drug you take for the above listed symptoms only mask the pain like putting on a band-aid and does not prevent the symptoms or reverse the symptoms like Dr. St. Amand's protocol will.


Why Should Anyone Trust This Doctor's Protocol Over a Rheumatologist Prescribing Anti-Depressants, Sleep Disorder Medications, Pain Medications, Anti-Convulsants, etc...?

Dr. St. Amand has been studying this condition and its symptoms for 50 years and he himself suffers from it.  His entire family suffered too.  He has devoted his career to doing a study in 1995 that failed but was also successful (more on that soon), writing recently published scientific articles, and treating 10,000+ patients suffering from FM.  That's a lot of experience!

The 1995 study was unsuccessful because it seemingly showed his reversal treatment didn't work.  However, it was a success because he learne two new things that patients must do in order for "the guai protocol" to work for them - 1) stop using all salicylates and 2) if you are also hypoglycemic (HGs) adhere to his diet for HGs.

Thousands have benefits from his findings and have felt completely or partially cured by the guai protocol.  There is a web site, support group and list or providers who guide patients through this protocol and do the mapping to test to see if the bumps and lumps are going away as you take guafenisen each day without using salicylates.


Why do FM have to Avoid Salicylates?

Salicylates block guafenisen from working properly.  Dr. St. Amand describes how guai works by having us imagine there are little parking garages inside of receptors in our kidneys tubules that the guai must park in to remove the excess phosphate that is in our body.  But if we are using salicylates topically or taking them in concentrated form orally, we can block the guai and the salicylate will take the space in the garages first preventing phosphate from leaving the body.

What is the Cause of Fibromyalgia?

It is genetic, as I said, and it is triggered by life events, stressors, age, hormonal changes, injury, trama, etc...  Essentially, your body systems are suffering because your kidneys are not properly ridding your body of phosphate which is in so much we consume and are exposed to.  This surplus of phosphate then leaks out into the cells of our body;s tissues, muscles, organs and that is why the list of symptoms above is so long - this can (and usually will after years left untreated) affect the entire body and all its systems.

What is My Plan?

Well, I'm being the good patient and am waiting for my neurologist appt mid-July 2012 to rule out neurologic conditions.  Once that is done, I'm sent back to my rheumatologist who already says she suspects Fibromyalgia.  My first rheumatologist suspected Fibromyalgia and Chronic Fatigue Syndrome.  Dr. St. Amand believes both conditions are one and the same and that there are millions of suffers in the U.S.

I also have to set up an appt with someone who can do "mapping" on my body and mark on a chart where all of the lumps/bumps are on my body.  This will also confirm a diagnosis of FM and give me a starting point to work from.  Once I've done this, I can go on the guai protocol at 300mg twice a day and if my symptoms get worse, I'll know that it is working.  If they don't do anything after awhile, my dosage will be bumped up until it does get worse.  Getting worse is what I have to do to get better.  I long for the good days I know are ahead of me!

In the meantime, I'll start replacing products with salicylates in them.  It isn't easy but I've been practicing already on how to read the labels using the great resources in Dr. St. Amand's book and his web site.  I'll also begin a journal of my symptoms so that I can know what my bad days are like now to compare them to the worse days coming when the body is ridding my tissues of phosphate and then compare that to the days I long to see - the good days when I'm symptom free!


My Hope

One day, I hope to report to you that I am free and clear of all symptoms (as long as no permanent damage has been done but I'm hoping considering how young I am that has not happened).  I hope to take what I've learned and help others.  I hope that all I know with symptoms like the ones above will understand each person suffers differently with FM and no two suffers are exactly alike but very similar to one another and that they will take this information and apply it to their lives and live normal again.

Many FMs stop living, live in their home, don't work, can't work, withdraw socially, have guilty feelings because of all they cannot do, don't pay bills on time, have depression from all of this, cannot stop sleeping in cars, feeling too tired to even begin their list of to-do's, can't take care of their kids/family well so their relationships suffer, have strained relationships because no one around them understands mostly because most FM don't even understand their own condition.

I don't want to be this way forever.  I don't want to get worse.  I want to be pain-free, live without digestive upset, have my memory back, my ability to focus and concentrate returned, my energy to be awake all day long, etc...

I will find my cure!


Resources:



The Fibromyalgia Treatment Center - operated by Dr. St. Amand and Claudia Marek, his medical assistant

What Your Doctor May Not Tell You About Fibromyalgia
 by Dr. St. Amand and Claudia Marek

Mapping Chart

Research behind the Guafenisen Protocol by Dr. St. Amand

Salicylate-Free Products Guide


Find a Doctor Near You that Knows of Dr. St. Amand's Treatment


Hypoglycemic or Think You Might Be?

The Medical System is Broken but You Can Find Answers!

"THE medical world has built an infinite literature without any (except erroneous and vacillating) ideas of cause.  Medicine is rich in science, but now, as well as in all past time, it suffers from a death of practical ideas. The average doctor is often educated out of all the common-sense he was born with. This, however, is not his fault. It is the fault of the system. He is an educated automaton. He has facts—scientific facts galore—without ideas. Ford has mechanical and philosophy facts—not more, perhaps, than thousands of other mechanics, but he joined them to an idea which made him a multimillionaire. Millions have facts, but no ideas. Thousands of doctors have all the scientific data needed, but they have not harnessed their science to common-sense."  ~ J. H. Tilden, M.D. from Toxemia Explained: The true interpretation of the cause of disease. 

How the System is Broken

Wow, what powerful words of truth and insight into the crux of the problem with healing disease today.  Medical technology and advancement is quite amazing and we are all thankful for it.  But a big problem exists when the medical system does not create more room for stepping outside the medical norm in diagnosing and treating a specific condition.  We have experts in natural remedies, out-of-the-box testing, nutrition, exercise, alternative health care modalities, changes in lifestyle, etc...  These experts are naturopaths.

However, naturopaths are not licensed but in 16 states so how a naturopath can care for you like in Maryland where naturopathic physicians are not licensed yet is greatly limited.  For instance, if you present to a naturopath with complaints of symptoms that require blood testing with a blood draw, they cannot perform this test without violating the law.  They can only educate you about what might be going on and recommend you get testing, etc... from other providers who are licensed.  Naturopaths cannot even diagnose you.  This is truly an insult to these professionals and a huge problem for consumers needing this unique testing, care and advice on nutrition, exercise and lifestyle.

(Get involved in licensing Maryland Naturopathic Physicians - www.MDANP.org) 

 How are YOU affected?

As a consumer of healthcare looking for your diagnosis like I am or at least the underlying cause or causes so you can "fix" your medical issues once and for all, you are negatively impacted by the broken medical system and how it is set up.  We must go to our Primary Care Provider (PCP) and get assessed.  From there, we are shipped out to an "expert" in certain types of medical conditions like if arthritis is suspected, you are sent to a Rheumatologist.  If digestive problems are plaguing you, you are sent to a Gastroenterologist.  If your gums hurt, you are sent to a Periodontist.

Our medical system today contains doctors who are not specialists in nutrition, exercise, and lifestyle changes.  Certainly, that does not mean you won't get such advice from a physician, but most medical doctors would submit that they do not consider themselves experts in such advice.  Especially when it comes to use of homeopathic remedies, herbs, supplements, vitamins and which alternative health care practitioner can best take care of the patient's needs.


Do We Really Need Care by This Many Specialists?

The simple answer is probably not.  If all ailing consumers were receiving care, diagnostic testing and treatment from a naturopath first and foremost, most consumers wouldn't need to have highly specialized testing and medications prescribed by a medical specialist like a neurologist, a psychiatrist or a dermatologist.  Amazingly, just altering diet, exercise, habits, lifestyle, reducing stress, getting more rest, taking supplements or vitamins, etc... are all most people need to correct their ailments.

Some consumers might need testing outside of the normal CBC, metabolic panels, lipid panels, etc... not offered or sometimes just not thought of by PCPs or specialists.  Some digestive or arthritic or auto-immune conditions would never prompt the typical medical doctor to refer you for further testing like to look for allergens, toxic metals, etc...  A licensed naturopath can do all of these things and help you avoid going through the frustration of weeks of waiting to see a specialist, highly technological and even invasive testing, receiving a diagnosis and then medication to relieve the symptoms.  However, none of this will get rid of the underlying CAUSE of your newly diagnosed condition and most medications come with side effects that cause other health issues to occur.

Understanding the Root of ALL Problems within Our Bodies

Let's start with what is inflammation and why it should matter to you.

"The most powerful concept in disease prevention and treatment today is inflammation...  Inflammation touches every aspect of our health.  In a series of medical breakthroughs, scientists have discovered that inflammation is a common thread linking heart disease, some forms of cancer, diabetes, osteoarthritis, asthma, migraine, headaches, Alzheimer's disease, fibromyalgia, periodontal disease, sinusitis, irritable bowel syndrome, inflammatory bowel disease, and chronic fatigue syndrome...What they thought was a relatively simple body function turned out to be massively complex,  involving many different types of body cells and occurring in multiple stages...Until recently, most inflammation research has been disease-specific, mainly because research scientists tend to specialize in particular areas of medicine".    ~ William Joel Meggs, MD, PhD from The Inflammation Cure

Dr. Meggs believes all conditions go back to inflammation in our bodies.  He also believes there is a cause for all types of inflammation whether you have diabetes, heart disease, arthritis, muscle pain, memory issues, digestive complaints, etc...

 Many of us think our conditions of the body are isolated and are not connected.  Research is showing scientists and doctors who will listen that all of our body's conditions are related to one or more causes that when removed, the condition would be cured providing the body has not experienced irreparable harm in the time since becoming inflamed.  Dr. Meggs wants us to set aside compartmentalization of medical conditions we've all been trained to do, and instead to think outside the box...

"When the artificial boundaries of specialization are ignored, a pattern emerges: inflammation is not disease-specific.  It affects the entire body, not just individual body parts.  And research has shown that disease we thought were unrelated are actually intimately linked...This inflammation connection tells us that caring for our health means more than just caring for individual body parts...When we treat inflammation in one part of the body, other parts of the body also become healthier."  ~ Dr. Meggs

Using My Medical History as an Example

Over the years, I've been diagnosed with or experienced the following symptoms with no diagosis:  anemia, irritable bowel syndrome, anovulation, amenorrhea, anxiety, heart palpatations, chronic bronchitis, low-back pain (pre-pregnancy), extreme fatigue, unusual systemic body itch lasting months with no relief from any type of treatment nor any diagnosis after three bags of IV antibiotics, muscle pain, joint pain, nerve pain, inflammation of nerves in my neck and back, hot flashes, freezing cold in arms/legs, memory issues, focus problems, cat dander allergy, food allergy (dairy/eggs), sensitivity to all kinds of fragrances/detergents/odors, vitamin D deficiency, yeast infections vaginally/breast, mastitis, and in my last pregnancy, proteinuria, high blood pressure for me although under 140/90, hyperuricemia and nearly pre-eclamptic (liver enzymes were elevated but still inside the normal range just days before delivery). 

Today, I primarily suffer from pain in my back, arms, legs, feet, hands, toes, fingers off and on.  I also suffer from mental focus issues, memory issues and chronic yeast infections, colds (recently pneumonia), extreme fatigue (dangerous while driving and experiencing this), nausea, digestive upset, low energy for hours or days, and all over weakness which leads to irritability.

My most recent cause of immune system issues came after my naturopath gave me a home finger prick blood test kit so I could test myself for IgG and IgA food allergies.  That's when I learned I have a high immune reaction to eggs and a moderate to moderately high immune reaction to all dairy from bovines including milk, cheese, yogurt, etc...


How I'm Doing Today


I have experienced a drastic reduction in pain, an increase in energy and strength since going dairy/egg free in the last few weeks.  But my symptoms are not completely resolved.  Dr. Meggs said we may have more than one cause.  I think mine is certainly multi-faceted.  I have my theories and will explore them later on this blog.

Why I Don't Just Pump My Body Full of  Medications to Relieve Symptoms and Neither Should You

A couple of weeks ago I had a very inflammed nerve in my back that was so painful it felt like I was being constantly stabbed.  I went to the chiropractor and then another one who uses physical therapy.  It helped but didn't take the pain away that prevented me from moving, holding my children, breastfeeding my daughter, sitting and standing or any other normal function of a mother of four.  I simultaneously had a horrible cough that was worsening with unusual noises.  With my history of bronchitis, I knew it wasn't that.

I went in on a Saturday to see my PCP.  She gave me an antibiotic for my pneumonia (yikes!) and a steroid to relieve my back pain.  For days, I had been living with ice affixed to my back most of the day.  Within a very short period of time after taking the steroid, my back pain was gone.  The steroid took away that inflammation but also took away inflammation I felt in other areas - I had more energy and less pain all over.

This was a welcomed relief!  However, with every anti-inflammatory drug there is also the down side - it can lower our immune function.  Getting over the pneumonia and cough was now even harder for me.  It was also only safe for the short 3 days I took it for my daughter who is exclusively breastfed and is only 6 months old.  This remedy was a nice quick fix and a great "break" from the chronic inflammation I experience daily but it was only that, a quick fix.  It didn't remove the cause and it wasn't "the cure".

There is so much more to explore from here.  For now, I'll end with Dr. Megg's words...

"Inflammation is influenced by what we eat, how much exercise we get, the level of pollutants in the air we breathe, the toxins in the cleaning products we use, the insectisides we spray, the amount of sleep we get, how much stress we experience, the intensity of our emotions, and the quality of our social relationships.  In short, everything we eat, breathe, think, feel and do has an effect on inflammation." 

Coming soon... "My Inflammation Story"  -- a post about my journey to-date and what daily life has been like for me and my family.  


More about inflammation:  William Joel Meggs, MD, PhD is a professor and chief of toxicology division of Brody School of Medicine at East Carolina University and is board certified in Medical Toxicology, Internal Medicine, Emergency Medicine, and Allergy & Immunology.  You can buy his book, The Inflammation Cure.

Inflammation: The first of many posts on this topic...

Do you suffer from an "-itis"?  Do you have a disease condition?  Are you undiagnosed but in daily misery with symptoms you aren't sure what they are? And maybe or maybe you didn't see a physician or other provider for more insight?

Welcome to The Inflammation Club.

(Note:  There is no exclammation point because this isn't an exciting moment.  It's a rather depressing and frustrating one.)

In addition to my other passions, I will explore inflammatory processes and treatments, as well as let you follow my own personal journey through this unexpected and ever-draining ordeal.  I welcome your comments and hope any info I provide helps you along your path.

I am a student midwife, a health researcher especially on topics relating to women's health, pregnancy and birth, a doula (labor assistant), a childbirth educator, a mother of four and a wife.  I am not your healthcare provider so everything I share is to be read with interest and discussed with your healthcare team of professionals guiding you on your own journey.

Join me until we find our own unique cures and become inflammation-free!