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Fibromyalgia (FM) is characterized by chronic and widespread body pain. It affects about 2% of the population, or about 4 million adults in the US, according to the CDC. The National Fibromyalgia Association (NFA) however states that it affects anywhere between five to eight million Americans. It is one of many medical syndromes that I consider “invisible” for the fact that on the surface, a person may look healthy and as if nothing ails them. Underneath, however, it is an entirely different story. 

For decades, people who had FM were often not listened to, disregarded, mis-diagnosed or worse, were considered attention-seekers or even mentally unstable (a family friend of mine was one of those unfortunate victims). But in recent years, as more research has been conducted, FM has become more widely accepted as a syndrome. Fortunately as a result of that, more treatments and ways to live with less pain or side effects has become more readily available.

The history of fibromyalgia

The concept of FM was first really given weight in 1977 when Smythe and Moldofsky mentioned fibrositis in a paper. In 1981, the first controlled study as relating to FM as a syndrome was conducted. More papers were written and research was conducted throughout the 1980s, but it wasn’t until 1987 when an article published in the Journal of the American Medical Association first used the term “fibromyalgia syndrome”. In the same article they also referred to it as a “controversial condition”. 

It was a few years later, in 1990, when The American College of Rheumatology published its first classification criteria for the syndrome. But from what I’ve gathered speaking to various doctors trying to diagnose my own syndromes, it took many more years for FM to become as widely accepted as it is today. 

A personal journey

I need to jump in with my personal journey at this juncture, following the above paragraph, because when I was diagnosed about 15 years ago, I was truly lucky to have gotten an appointment with a progressive rheumatologist. After years of suffering, and after having seen doctor after doctor and having no answers and only increasing amount of pain and discomfort, my rheumatologist said that I had a clear case of FM. 

I can’t tell you the relief that I felt after talking with her and getting the results back. After years of suffering without answers or relief, I now knew what was wrong with me. But further, I now knew that I wasn’t… well, crazy. The pain that I felt was real and it was there for a reason. It was caused by abnormalities in how pain signals were being processed by my central nervous system. 

My rheumatologist shared with me that, at the time, some doctors were still coming to terms with this syndrome. That is why I said above that she was progressive, and she had me diagnosed within minutes! I was just astounded over the fact that I had spent years with unnecessary pain and discomfort because the doctors I had seen prior to her either didn’t know or didn’t believe in FM. 

Fortunately, now some 15 years later, FM has become more widely accepted and main stream. Case in point, last year I saw a television commercial for a new treatment. 

What is fibromyalgia?

Before we get further along, let me explain more specifically what FM is and how it manifests. As mentioned it is widespread chronic pain throughout the body, and there is no cure. It occurs most often in women but men and children can also develop it, but globally about 2% of the population from all ethnic backgrounds are diagnosed with it. The International Classification of Diseases places FM in the “chronic widespread pain” category whereas, as mentioned above, it is caused by abnormalities in how pain signals are processed in the central nervous system. 

Widespread pain is only one of the symptoms of FM though. The pain is profound, however, as well as chronic. The pain can migrate within a patient’s body and the intensity of the pain can vary. According to the NFA’s website, “FM pain has been described as stabbing and shooting pain and deep muscular aching, throbbing, and twitching. Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of patients. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress.” 

Before continuing I just want to point out that there are seemingly oxymoronic things happening with FM, and that is also something that I found very frustrating when I was first diagnosed. For example, if a person with FM doesn’t sleep well then their FM can flare up. Yet, FM also causes sleep problems. We, the FM patients, can suffer from chronic fatigue and so exercise seems very daunting in those times, causing us to be inactive while we ride out the pain. But exercise can help to make us feel better and alleviate or lessen pain at times. Yet, too much physical activity can also cause a flare-up. It just doesn’t seem fair, does it?

Anyway, moving on. 

Other FM symptoms can include fatigue, sleep problems, cognitive problems and brain fog as well as hypersensitivity, but there can also be overlapping conditions such as irritable bowel syndrome, migraines, and other syndromes too, like in my case, I also have Sjogren’s syndrome. And people with fibromyalgia can also develop other syndromes such as rheumatoid arthritis, which I am checked for every time that I see my rheumatologist. 

The list doesn’t stop there because FM is often associated with mental health such as anxiety and depression as well as bipolar disorder and post traumatic stress disorder. Wikipedia states that, “Patients with fibromyalgia are fives times more likely to have major depression than the general population. Experiencing pain and limited activity from having fibromyalgia leads to less activity, leading to social isolation and increased stress levels, which tends to cause anxiety and depression.” 

Much more can be said about FM and how it manifests, please visit NFA or other such sources if you’d like to learn more, but I’d like to move onto the next topic at hand.

Risk factors and diagnosis

There is no known cause for FM, there are numerous risk factors as well as predispositions, genetic and environmental, that have been linked to it though. 

According to Wikipedia, “Genetics play a major role in fibromyalgia, and may explain up to 50% of the disease susceptibility.” For me, my maternal grandmother has it as well as my paternal aunt. 

Stress can also be linked with people developing FM. Essentially, some doctors believe that high levels of stress and trauma can result in a person developing the syndrome. Wikipedia even states that, “… exposure to stressful conditions can alter the function of the hypothalamic-pituitary-adrenal (HPA) axis, the development of fibromyalgia may stem from stress-induced disruption of the HPA axis.”  That said, research has shown that one personality type over another is not more susceptible or inclined to develop FM. 

Further, doctors and scientists believe that other factors are at play for people developing FM such as their immune and digestive systems, to name just two.

The American College of Rheumatology has a diagnosis standard that they go by to diagnose FM. In my case, it was my rheumatologist that diagnosed me. The NFA shares this when it comes to diagnosis:

• The FM classification criteria, established by the American College of Rheumatology (ACR) in 1990, includes a history ofwidespread pain in all four quadrants of the body for a minimum duration of three months, and pain in at least 11 of the 18 designated tender points when a specified amount of pressure is applied.
• New diagnostic criteria were developed by the American College of Rheumatology (ACR) in 2010. These criteria do not use tender points but focus upon pain being widespread and accompanied by allied symptoms such as sleep problems, problems with thinking clearly, and fatigue.
• Since people with FM tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the disorder is necessary to make a diagnosis.
• Physicians should rule out other causes of the symptoms before making a diagnosis of fibromyalgia. To learn more please visit their website here. 

For diagnosis, it is imperative to see a physician and specifically a rheumatologist, I advise from my personal experience. 

Treatment and life with FM

There is no cure for FM, and so “treatment” revolves around managing symptoms and flare-ups. There are some medicines available, some new even, but admittedly I have refused any medication since I was diagnosed so I am not the best person to speak of these. And quite frankly, FM is a very personalized syndrome and so treatments and management should be discussed with your rheumatologist who is familiar with your specific body, ailments, and case of FM. 

I must add that every person who has FM that their symptoms can vary greatly. For example, I know of people whose pain is so severe that they are simply unable to function or get out of bed. I am grateful for the fact that most of the time my FM is not so severe, but I have also made it my mission in the last 15 years, since being diagnosed, to live a life where FM doesn’t stop me from living, and to avoid getting flare-ups. What that involves is living a relatively stress-free lifestyle where I try to eat well or eat foods that literally make me happy while trying to sleep and exercise so that my body feels happy. But as with a busy life, sometimes it is hard to keep up with these things all the time, and in those moments sometimes I have symptoms flare up to remind me that I have to take care of my mind and body. 

And I will tell you, if I am feeling a little down mentally or just having a bad day, it is like an immediate message to my FM to flare up. Likewise, if I get physically cold or am feeling a little under the weather, that is as if my body sends a signal for my FM to flare up. 

I will also add that FM is an extremely frustrating syndrome because there is no rhyme or reason to it. For example, every time I have a flare-up I will have sporadic and extreme pain all over my body that seems unrelated and it is very frustrating for a logical and cerebral person like myself. Why does my right elbow throb with pain when a minute ago my left ankle was on fire, only to be followed by shooting pain between my shoulder blades? There’s no rhyme or reason. It is just FM running amuck with my nervous system that’s resulting in me often crying and screaming in pain. Oh yes, it can be that severe and it’s no walk in the park.

National Fibromyalgia Awareness Day

Today, the day we publish this article, May 12 is National Fibromyalgia Awareness Day, and it is for that reason that I wanted to share not just information about this extremely frustrating and painful syndrome, but why I also share a bit about my own personal story and struggles with FM. 

I will end this article by simply and directly quoting the NFA on this year’s Awareness Day Campaign message from their website: 

“For over a dozen years the FM community has felt underserved and has been asking for the introduction of new and effective treatment options. The NFA has heard your expressions of frustration, fear and hopelessness, and we have fought for change and improved help for our community of millions! We are pleased to finally be able to celebrate and recognize that the FM and chronic pain communities have NOT been forgotten! 2024 will provide: new treatments, a better understanding of pain and the needs of people in pain, expanded education for both patients and HCPs, the building of a better well connected FM community, and the expansion of patient centered medicine providing patients with new ways to express their wants and needs! This year we will help you the FM community to learn about these NEW WAYS to help improve your health and show you that there are thousands of people who are working diligently to find ways to help improve YOUR quality of life!”

To learn more about FM, the FNA and their research or to donate, please visit https://www.fmaware.org

*Disclaimer: All medical claims made in this article are information provided by the subject. The information is general in nature and not specifically meant for any particular individual. You should always seek out medical assistance from a medical professional based on your individual needs and circumstances.