Fibromyalgia

The truth is mainstream medicine doesn’t know what causes fibromyalgia. The word fibromyalgia literally means fibrous tissue (fibro), muscle (my) pain (algia). That isn’t a diagnosis. It’s a label.

When a person seeks help for wide-spread muscular and joint pain that’s lasted at least three months, the healthcare provider runs tests and asks about other symptoms.

When the tests come back negative and other symptoms include fatigue, trouble thinking or waking up exhausted, the healthcare provider can keep investigating or give the label of fibromyalgia [1].

This is why fibromyalgia is sometimes called a waste-basket, garbage-can or junk diagnosis. It is a discarding of the investigation into the cause of the symptoms.  It is a label, and it can be devastating to hear.

My Experience with Fibro

I remember when a rheumatologist told me with no trace of empathy that I’d have to learn to live with the deep aching pain and unrelenting fatigue I’d been experiencing for about two years. His words crushed my hope. I imagined living in relative agony and lack of physical and mental energy for another 60 years or more. I could not contain the tears welling in my eyes. His response was callous. He wrote in my records that I needed a psych eval because I cried.

It was then that I learned I had to become my own advocate.

But There is a Cause!

Our bodies don’t produce pain or overwhelming fatigue without reason. Pain is a signal from the body that something is wrong. Fatigue is signal that the body is being stressed and needs to recover from something.

Then what’s the cause of fibromyalgia?

Research shows a strong a correlation of immune system activity and fibromyalgia [2]. We are constantly exposed to pathogens, such as viruses, mycoplasma, protozoa, fungi and bacteria. Some of these micro-organisms, known as stealth microbes or pathogens, can evade the immune system [3]. Many also go undetected by lab tests as they burrow into tissues rather than floating around in the blood stream [4].

Therefore, the logical conclusion is that there is some type of stealth pathogen involved with the symptoms of fibromyalgia.

The Cause of Fibromyalgia in My Body

For nearly two decades I had been searching for cures to the symptoms of fibromyalgia and advocating for my own health. Then I ran across an article that changed my life. It was about stealth mycoplasma and the symptoms they can cause. Those symptoms were the same symptoms as Fibromyalgia.

The author of the article, was a scientist who had studied mycoplasma, Professor Garth Nicolson. I Googled him, found his email address and sent him a message asking how to get tested. He suggested I go to my rheumatologist and ask to have the test run at a particular lab.

I was on my third rheumatologist by then and had only been to the latest new one once. So, when I saw him on my second visit, he didn’t really know me. He was not receptive to my request for testing, despite my explanation that he didn’t need to treat me. I just needed someone to order the test. Instead, he came in with pamphlets about fibromyalgia and told me, as all the doctors before him, to do light aerobic exercise.

I left in tears. Angry tears. I had been researching and dealing with the symptoms probably as long as he’d been practicing medicine. Yet he treated me like he was just delivering the diagnosis.

Why I was not allowed to order a test myself still baffles me. I was at the mercy of doctors who just seemed unwilling to figure out the underlying cause of the symptoms.

Getting a Real Diagnosis

I reached out to Professor Nicolson again and told him what had happened. He told me to find a Lyme literate medical doctor, aka LLMD.

The LLMD clinically diagnosed me with an infection with stealth pathogens, including borrelia burgdorferi that causes Lyme Disease.

I discovered that Lyme disease tests are not very reliable. Many people with Lyme disease test negative. The reasons include the fact that the standard tests look for the body’s response instead of the actual bacteria; the test may not be sensitive enough, the standard tests aren’t designed to detect all species of the bacteria and do not cover co-infections like Bartonella, Mycoplasma pneumoniae, Babesia, Ehrlichia, and others [5]. 

He explained that every patient who came to him with a previous diagnosis of fibromyalgia or chronic fatigue syndrome were found to be suffering from some form of pathogenic infection.

Turns out that I’m not sure if it was mycoplasma or Lyme disease or bartonella or all of them and more. But it didn’t matter. The answer was infection. It was finally the start of my recovery.

Fibromyalgia treatment

Being “diagnosed” with fibromyalgia means the journey to uncover the cause has ended. It means learning to live with the pain, brain fog, and fatigue while taking measures to reduce, but not eliminate the symptoms. It’s important to find a healthcare provider who will not give you that label.

Real fibromyalgia treatment means discovering and treating the cause while managing the symptoms. Everyone’s journey is unique and will take trial and error to determine the safest and most effective treatments.

Both natural supplements and pharmaceuticals have helped me in my recovery.

For pain, I use magnesium citrate and ibuprofen. Although, I do my best to limit the latter as it can damage the kidneys. I have not tried the prescription drug, Lyrica, but I know it helps some people.

To get the microbes under control, I used prescription and natural antibiotics, antifungals and antiparasitics. It was also important to get my hormones back to an optimal level, like that of a 25-year old, and clean up my diet and emotions so that my immune system was functioning at its best.

Reducing stress was key to the getting over the last hump in my recovery. This meant figuring out relationships and work environments. It wasn’t easy to move on, but I had to prioritize my health.

I haven’t been on prescription meds to control the microbes for about 4 years. While I have minor relapses, they are nothing compared to the state I was in when I met the LLMD. I’ve gotten to know my body’s signals and can take action to get back to feeling good.

 Health Coaching Advice

The advice I can give is to not settle for the diagnosis of fibromyalgia. Find a doctor that is willing to investigate and work toward healing the cause.