Fibromyalgia

What the textbook says: Fibromyalgia is a prevalent yet complex condition, most commonly recognized by its defining symptoms of widespread pain and profound fatigue. This disorder is often referred to as an “invisible illness,” a term that aptly captures its elusive and often misunderstood nature.

You are here for one of two reasons

1. you or someone you love received the diagnosis of fibromyalgia
2. you looked up your symptoms and you are pretty sure you have fibromyalgia (what i call “I-Dont-Feel-Good-ITIS”. Either way you are in the right place

I am here to tell you. DO. NOT. ACCEPT. THIS. DIAGNOSIS.

This does NOT MEAN that your symptoms aren’t real. Of course they are real. You wouldn’t have landed on this page if you weren’t suffering and searching for answers.

Please, when you read this you should know that I AM ON YOUR SIDE. I believe you. I KNOW its not in your head  (I even wrote a book about it), 

This article, will walk you through the basics. What the diagnosis is, How its diagnosed, how its treated etc.

Then I will tell you why its not an acceptable diagnosis – not because your symptoms aren’t real – but because they are so real that you should want more.

Why?

Because you always KNEW there was a better way (that’s why I called my company the KNEW method)

The Invisible Illness

Fibromyalgia is called the “Invisible Illness”  for two reasons. First, the symptoms are not visible. People can’t see your pain, you don’t have broken bones, your labs are often normal – you are in distress but no one can see your symptoms on the outside.

The second reason it’s called “invisible” is because after a while you will feel invisible. After going from medical provider to medical provider being told that you are fine, there is nothing wrong with you, maybe just exercise more, sleep more, lose weight, and take antidepressants. Hear that enough and you will start to feel invisible.

And if you received the diagnosis of Fibro, you might for a moment feel like “finally, someone sees me! I have a diagnosis! I’m not crazy!” However, you will soon discover that the diagnosis of fibromyalgia – makes you even more invisible- because it means all medical providers will stop searching. You will be branded as “that patient with fibro” and you will be more invisible. 

Trust me, I know, I’ve been a practicing nurse practitioner for decades. Many of my colleagues roll their eyes when the patient comes in with the diagnosis of  Fibromyalgia. 

The standard approach to managing this condition involves a range of medications. These may include pain relievers and antidepressants, among others. These treatments are primarily aimed at alleviating the tangible discomfort and emotional stress that are so often associated with this condition, but do often do little to address the underlying causes.  Therein lies the problem. 

You know you don’t feel good, you’ve been given a diagnosis, but you still don’t know what’s causing it.

What is Fibromyalgia

Ok what is fibromyalgia? 

Fibro (tissue) – Mya (muscle) –  Algia (pain). 

It literally means TissueMusclePain. Not a very original name is it? IT JUST DESCRIBES WHAT YOU HAVE IN LATIN. Thanks for being so helpful (not).

Fibromyalgia is the diagnosis given when someone has  chronic pain that can’t be explained by anything. Fibromyalgia is characterized by widespread muscle pain, tenderness, fatigue, and other symptoms.  Basically your body hurts all the time.

Who has it?

Around 4 million adults in the United States, or approximately 2 percent, have been diagnosed with fibromyalgia. The majority of cases are diagnosed in females, and most people are diagnosed in middle age, although it can affect children as well.

Common Symptoms:

• Musculoskeletal pain and tenderness
• General fatigue
• Waking up from sleep feeling unrefreshed
• Sleep and cognitive disturbances (“Fibro Fog”)

The condition can be difficult to diagnose because there are no lab tests or X-rays that can prove that you have fibromyalgia. Instead, your doctor will evaluate your symptoms and order blood tests to rule out other possible causes of your symptoms, such as anemia or hypothyroidism.

Fibromyalgia Symptoms

Fibromyalgia can be hard to understand and diagnose, even for healthcare professionals. Symptoms often mimic other conditions, and there are no specific tests to confirm a diagnosis. As a result, it has been frequently misdiagnosed in the past.

The symptoms of fibromyalgia vary from person to person, but common manifestations include:

Musculoskeletal Pain

The hallmark symptom of fibromyalgia is widespread pain in the muscles and joints. This pain can range from a dull ache to a severe discomfort that affects daily activities.

Tenderness

Fibromyalgia is often associated with increased sensitivity to touch, and certain tender points may be identified during a physical examination.

Fibromyalgia Tender Points

Previously, fibromyalgia diagnosis relied on the identification of tender points. These are specific areas on the body that are exceptionally sensitive to pressure. However, the diagnostic criteria have evolved, and tender points are no longer the sole focus. Diagnosis now considers widespread pain in specific regions of the body, rather than relying solely on tender points.

Fatigue

Profound fatigue and exhaustion are common in individuals with fibromyalgia, even after sufficient rest and sleep.

Sleep Disturbances

Many people with fibromyalgia experience sleep disorders, such as insomnia or nonrestorative sleep.

Cognitive Disruptions

Cognitive difficulties, often referred to as “fibro fog,” can impair memory, concentration, and overall mental clarity.

Disruptions in mental functioning refer to alterations in cognitive abilities, memory, and attention spans that disrupt everyday routines. These may encompass mental disorientation, an inability to maintain focus, compromised concentration, and challenges in decision-making or strategic planning.

Other Symptoms

Fibromyalgia can be accompanied by various other symptoms, including headaches, abdominal pain, bladder problems, depression, anxiety, dry eyes, itching, and rashes.

How Do You Diagnose Fibromyalgia?

You don’t. Well you do. But you don’t.

It’s called a “Diagnosis of Exclusion” Which means your conventional medicine provider will do all the tests they can think of and and when they all come back negative, meaning they can EXCLUDE all other possibilities, then they just assume you have fibromyalgia.

That’s it. Fibromyalgia is diagnosed in a process that ends with “We can’t find anything else – so you must have it”. K. Bye.

How can this be enough?

Now that being said… be sure that you take the time to do all the tests your medical provider suggests- don’t skip this part – be as thorough as you can to be sure you don’t miss anything – and once they land on fibromyalgia- you just say thanks and move on.

But here is what your medical provider will start

Physical Assessment

Your medical provider  will perform an examination of your joints, muscles, and tendons for any signs of pain or tenderness. They will also look for other conditions that might produce similar symptoms, such as arthritis or thyroid malfunctions. A thorough physical exam is an important first step.

Blood Tests

The provider will likely request blood tests to exclude other conditions that generate similar symptoms, such as diabetes, thyroid issues, and anemia. If these tests turn out negative, but fibromyalgia remains a suspected diagnosis, additional blood tests may be ordered. This can include testing for autoimmune issues like lupus, rheumatoid arthritis and others. If these subsequent results also come back normal, it increases the likelihood that you indeed will be diagnosed with fibromyalgia.

Remember there are NO TESTS for fibromyalgia – the diagnosis is made when everything is negative.

Other Tests

There are even more tests that some provider will do that look for a specific pattern of inflammatory markers. Tests such as neutrophil-lymphocytes ratio (NLR), platelet-lymphocyte ratio (PLR), mean platelet value (MPV), red cell distribution width (RDW), and C-reactive protein (CRP) are being used.  The reason these tests are done is because there have been some studies that show that those suffering from Fibromyalgia had higher CRP, MPV and PLR levels than the control group.

The problem with these tests is that they just indicate that the patient has INFLAMMATION. I think anyone with fibro will tell you that they are inflamed.  I’m not trying to be too cynical here, but isn’t kind of obvious that people who are in pain all the time have inflammation. The problem is that a lot of people who are in pain for MANY DIFFERENT REASONS, will also have these elevated inflammatory markers. So it doesn’t really tell us much.

Hope For A Fibro Test?

There is talk about a newer test called the FM/a test which is in its first phases that claims that it can diagnose fibromyalgia because it can test for something called cytokines. These are special cells that are elevated when a person is inflamed.. But again, these are high in many types of patients, not just for people with fibro. 

But you know what? It doesn’t matter. Even if the test can accurately tell us that you have inflammation and we all agree that this pattern of inflammation is only found in people with Fibro – it still doesn’t give us the why? Why is this inflammation happening? Why is it causing pain and what can I do about it?

Whether we have a new miracle inflammatory test or not – we are still in the same exact boat which is when you are given the diagnosis of Fibromyalgia you are no better off than before the diagnosis. There is no why or how. Just a label.

What Causes Fibromyalgia?

Well that depends on who you ask.

First let me give you the usual answer – and then my take on things will come a little later. I want to be sure that you get the basics down first.

When you ask the experts the answer is pretty much … a shoulder shrug.

There are some theories out there some say there is a genetic predisposition.

Research suggests that certain genetic factors may increase the risk of developing fibromyalgia. It often runs in families, indicating a possible hereditary component. In our experience, the genetic predisposition to allergies such as gluten or mold offer more hope for coping with this disease rather than simply blaming the “FIBRO gene.”

Some research suggests that it may be related to changes in how your brain processes pain. That people with fibro are more sensitive to pain and that change has been seen on imaging in the brain.

How do you treat fibromyalgia

OK SO FAR YOU READ FIBROMYALGIA is a disease diagnosed when nothing else is found and no one knows the reason why it happens. Given this information how effective do you think the treatment will be? I hope the answer is clear to you- it is not possible to actually treat a disease if you don’t know what it is or what causes it. At best, you can treat the symptoms of the disease

Here is how fibromyalgia is treated traditionally.

1. Patient education

The very first recommendation is to spend time explaining to the patient what the disease is, the uncertainty of where it came from and the uncertainty about how to treat it ( I swear I’m not making this up- feel free to go to the source). These are the guidelines taken from UP TODATE

Part of the education is also to discuss sleep hygiene, exercise, stress management and other modalities if lifestyle changes should be implemented.

2. Address the Comorbidities

The next step of “treatment” is to address the patients other comorbidities. – in other words, fixing the other things that may be going on in your body. , If you are diabetic, manage your diabetes, if you are obese lose weight etc.

3. Medication

The third step is Medication. No not medication for Fibro (there aren’t any medications, because, remember, we don’t know what causes it) Instead, the medication is for antidepressant, muscle relaxers, anticonvulsants and other medications that will help with the SYMPTOMS of fibromyalgia

IMPORTANT: I want you to understand that I am not against taking medication. You don’t get extra points for suffering. Take what you need to help you get through this as you keep reading and searching for actual answers

Ok i think you get by now that I think there is so much more to fibromyalgia than the above. I am not the only one who thinks this way, by the way, there are many of us who are trained in Functional Medicine who see FIBRO in a whole different way.

I want to share this with you because I want you to find the reason behind WHY you feel this way and get your life back.

I am not selling any miracle cure or 90 day protocol. I don’t care if you sign up to work with me – in fact, I make it pretty hard to book a consultation with me. I am writing this because I care and I want everyone to have access to information.

Ok here is the bottom line about FIBROMYALGIA in the functional medicine perspective – It’s not the end diagnosis – it is just the beginning of the journey.

Living with Fibromyalgia

For some of you these symptoms are just the beginning stages of a disease process. The stage that I call “pre-disease”. The reason the lab results are negative is because the markers we use in conventional medicine are very limited. Give it a few more years and they will be positive. These are the patients I call Pre-Disease.

Pre-Disease

For this group of people, functional medicine starts to treat the root cause of your symptoms and can help you feel better – even though all your labs are negative. In fact, by treating the root cause you not only start to feel better but you may actually reverse this impending disease process and never have your labs pop up positive!

Just like you have pre-diabetes you have pre-autoimmunity. This is sometimes called SERO NEGATIVE autoimmunity (that means you look like an autoimmune patient but your SERUM (blood) is NEGATIVE.

Reactive

There is another group of people in this “fibromyalgia” group who do not and will not have an autoimmune disease but the reason they have these symptoms is because of issues that conventional medicine doesn’t test for.

I’ll talk about some of those issues in a moment, but what is important to understand for anyone in this group again is that finding the root cause of your symptoms means you can actually TREAT the cause of your pain instead of just the symptoms

Again you may have all of these or none of these, but the point here is that finding the root cause means you can have actual fibromyalgia TREATMENT instead of just medications that mask the pain.

Fibromyalgia Triggers

Like every chronic illness, Fibromyalgia may be triggered or exacerbated by physical or emotional trauma, infections, hormonal changes, or prolonged stress. These triggers can lead to an overactive pain response and sensitization of the nervous system.

Microbial Imbalance

The body’s microbiome is a bustling community of trillions of bacteria, assisting in food digestion, controlling immune responses, hormone creation, nutrient processing, and infection protection. However, when this microbiome loses balance, it messes with our ability to manage pain, deal with anxiety, depression and ignite inflammation that spreads all over the body, potentially causing muscular discomfort and joint pain.

SIBO and Increased Intestinal Permeability (aka “Leaky Gut”)

Small Intestinal Bacterial Overgrowth (SIBO) is a condition characterized by an excessive amount of bacteria in the small intestine, leading to issues with digestion, gassiness, bloating, and diarrhea

Increased intestinal permeability, often referred to as “leaky gut syndrome,” is a state where your gut lining becomes sufficiently compromised to allow foreign substances to infiltrate your bloodstream. This “invasions” sets off an immune response that creates a cascade of inflammation across the body, resulting in symptoms like joint pain and exhaustion.

Reactions to Foods

Food sensitivities are distinct from allergies because they do not trigger a typical allergic response. When you’re intolerant to certain foods, your body reacts to them in a wider variety of ways including, headache, joint pain, muscle pain fatigue. Sound familiar? I can’t tell you how many of my patients symptoms improve when we change their nutrition.

Thyroid Complications

Thyroid complications are a prevalent cause of fibromyalgia. An underactive thyroid gland is known as hypothyroidism, while an overactive one is referred to as hyperthyroidism. Both conditions can present many of the same symptoms as fibromyalgia, such as fatigue, muscle discomfort, and stiffness.

Those suffering from both fibro and thyroid issues will be well served to dig into the root causes as often the cause is triggering complications in both.

Lack of Essential Nutrients

A lack of essential nutrients often contributes to fibromyalgia. Deficiency in Vitamin D is a known risk factor for conditions like fibromyalgia, osteoporosis, and cancer. A shortage of Vitamin B12 can also elevate the risk of developing fibromyalgia.

Other potential deficiencies could involve magnesium and vitamin C, both crucial for supporting muscle function and fighting inflammation. While not always the root cause of fibromyalgia, these nutrient shortages could suggest an underlying health issue that warrants further exploration.

Adrenal Fatigue

Adrenal fatigue, everyone thinks that stress is about too much cortisol. It is at first, but for anyone with chronic stress over time, you actually deplete your cortisol levels and you are left tired, depressed, unmotivated and the list goes on. Balancing your adrenals is part of treating the root cause of many of the symptoms associated with fibromyalgia.

Mitochondrial Dysfunction

Not to get to technical here but mitochondrial dysfunction basically the internal batteries of your cells are going haywire. The Mitochondria are the “powerhouse of the cell” ; it’s the reason we are alive. When these guys get damage – nothing feels right. Targeting therapies to help mitochondria is a crucial piece to getting better.

Mold Toxicity

Mold is everywhere and not all mold is bad and not every person is affected by mold. But there are millions of people who are mold toxic. These are people who are unable to detox their body from mold and it just builds up causing all the symptoms of fibromyalgia. Testing and treating for mold is another potential treatment for some people who have the symptoms of fibro.

Lyme

Lyme and other tick borne diseases are more prevalent than we think and the worst part about it is that conventional medicine tests miss so many people who are positive. There are specialized labs that can run much more accurate testing for lyme and other tick borne diseases. These diseases infiltrate every part of the body and can cause anywhere from mild to severe debilitating disease. Testing and treating this is another key component of comprehensive fibro treatment.

I hope you are beginning to understand that if you have been diagnosed with fibromyalgia , conventional medicine testing and treatment is just your FIRST STOP. Their job is to rule out other diseases, your job is to keep hunting for actual answers.

Future Perspective on Fibromyalgia

Fibromyalgia is a complex condition that affects millions of people worldwide. While there is no cure, various treatment options and self-care strategies can help manage symptoms and improve quality of life. If you have received the diagnosis of Fibromyalgia, I encourage you to work with a healthcare professional who can help you determine the triggers and root cause of your symptoms and help you get your quality of life back.