What is Fibromyalgia (FMS) – NOT a pain symptom!

If you are asking “What is fibromyalgia”, you may be surprised that it is not just about pain! Whilst symptoms of widespread pain are a core symptom of fibromyalgia, so is sleep disturbance, fatigue and cognitive impairments and there are many more symptoms.

The word Fibromyalgia is derived from the Latin word fibra (fibre) and Greek words myo (muscle) and algos (pain). This suggests the condition is one of fibrous tissue and muscle pain, however, the types of pain that people experience is actually much more complex than the understanding that existed when the condition was named.

But fibromyalgia is about a much greater range of symptoms than pain, so it is no surprise why with a name like that, there is so much confusion around what fibromyalgia is. This disconnect between the name and the actual symptoms has given rise to the term ‘fibromyalgia syndrome’ and is often abbreviated as FMS.

Fibromyalgia Symptoms

When people ask 'what is fibromyalgia syndrome', they often think the answer has solely to do with pain.  However, whilst there is a core set of symptoms, the extended list of symptoms is large and varies between patients.

The core symptoms include:

  • Various form of pain including deep muscle pain, flu-like aches and stabbing or burning pain as well as pins and needles
  • profound fatigue not alleviated by rest;
  • cognitive impairment;
  • sleep disturbance;

But there can be many more symptoms of fibromyalgia including nervous and digestive system symptoms and sensitivities to stimulation and foods and medicines. For a full list please explore the article on fibromyalgia symptoms.

Fibromyalgia symptoms often exacerbate when triggers occur, which is called a flare-up. The triggers can be due to a range of things including physical or mental stress or strain, exposure to certain foods or chemicals or even a change in the weather. These fibromyalgia flare-ups can last days, weeks or even months. 

Severity of Fibromyalgia

Fibromyalgia syndrome is a serious and disabling illness that affects people to varying degrees.  The severity can fluctuate over time leaving people very ill and house-bound at times, but being able to engage in some study or work when the illness is milder. However, even when people experience milder fibromyalgia, it usually impacts their ability to engage in leisure and social activities often leading to isolation.

Fibromyalgia is real

Having discussed the range and severity of Fibromyalgia symptoms, it might seem strange to talk about whether fibromyalgia is real or not.  However, with so many of the symptoms difficult to measure and based on patient reporting, the myth that the illness isn’t real can occur. Unfortunately, this is sometimes expressed by suggesting that patients are hypochondriacs, depressed or attention seekers making up their symptoms. 

This is extremely distressing for a patient, given the genuine symptoms they are experiencing. People already find it difficult to deal with the illness and are often very vulnerable, so fibromyalgia advocacy and awareness play an important role in supporting people experiencing fibromyalgia.

Another reason why some people think the illness isn’t real, is that they view the symptoms as a collection of separate dysfunctions. However, once you understand the pathogenesis of the illness as described in CFS Unravelled, you can see that the different dysfunctions are connected and not a random coincidence.

Not only have I had this illness myself, but I have interacted with thousands of people experiencing this illness and I can categorically assure you that any suggestion that fibromyalgia isn’t real is simply not true and not fair.

Who gets Fibromyalgia

Anyone can experience Fibromyalgia Syndrome, although it is usually suggested that more women get the illness than men. However, fibromyalgia diagnoses are often not readily made and the difference in how men and women engage with their doctor may contribute to the difference in the fibromyalgia diagnosis rates between men and women.

It appears that family history plays a significant component in fibromyalgia diagnosis, which has given rise to there being a genetic component to the illness. However, whilst genetic predispositions occur for many illnesses, given the triggers seen at onset as well as other commonalities in the patient population, other factors within family histories may play a greater role.

Fibromyalgia is usually triggered by a significant stressor such as an injury, illness, emotional stress or other physical stressor such as exercise, child birth or surgical procedure.

Prevalence of Fibromyalgia Syndrome (Epidemiology of Fibromyalgia Syndrome)

Fibromyalgia rates reported vary drastically with some sources claiming rates as high 10% in the US, whilst the American College of Rheumatology states rates of 2-4% on their website.  One research paper that studied worldwide epidemiology of fibromyalgia reports the mean rate for women at 4.1%, for men 1.4% and overall at 2.7%.

However, given poor diagnosis rates for fibromyalgia, actual figures may be higher.

Cause of Fibromyalgia

Fibromyalgia is triggered by a large range of events including infections, toxic exposures, physical trauma or stress as well as psychological trauma or stress – this may be referred to as the etiology of fibromyalgia.

It is generally understood and reported that researchers have not found the cause of fibromyalgia, meaning they have not found the root cause or root mechanism of the disease and that they don’t understand the disease process (ie. the pathogenesis of fibromyalgia).

However, it may be more accurate to say that the cause of fibromyalgia is not widely understood or agreed upon.  The challenge for the medical community is that fibromyalgia affects multiple bodily systems and hence there can be multiple ways or disease processes that lead to the symptoms (the pathophysiology of fibromyalgia).

Fibromyalgia is also an illness with a large range of symptoms, many of which present in other diseases.  In addition, the vast majority of tests show either normal or somewhat abnormal function, as opposed to a definitive abnormality.   This reflects the fact that the body is in a deep state of dysfunction in fibromyalgia rather than a particular system/organ being “broken”. (such as in heart disease or Addison’s disease)

In CFS Unravelled, the complex dynamics and etiology, an explanation for the pathogenesis, pathophysiology and recovery mechanisms are proposed and explored in detail. Understanding the root cause and focussing on resolving it is key for recovery.

Since the publication of the book, we have seen a slow movements towards a concensus and demystification of the illness and the American College of Rheumatology has now stated on their website that fibromyalgia is a neurological health problem, and makes the point to state that it is not an autoimmune, inflammation, joint or muscle disorder.

What is Fibromyalgia - Summary

Fibromyalgia Syndrome is a neurological illness that affects every system of the body creating a large range of symptoms. It can occur at any age and can last a shorter time of six to twelve months or it can last longer. Some people experience full remission and can have a flare up again later in life, however some people experience a full and lasting recovery.

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