A Real Life Perspective Understanding the Basics Of Fibromyalgia — The ‘I Hurt Everywhere’ Syndrome

Six to 10 million Americans suffer from fibromyalgia. 

While much more is known today about the diagnosis and treatment of this chronic pain syndrome, some physicians still treat it as a ‘wastepaper diagnosis’ for anyone experiencing widespread pain, chronic fatigue, and a seemingly permanent state of confusion. Some doctors won’t even acknowledge the syndrome’s existence and treat patients with fibromyalgia, or FM, as nothing but ‘chronic complainers.’

To those who truly suffer from fibromyalgia, however, the syndrome is very real, and it can wreak havoc on their health, their lives and their family. What follows are the basics to begin putting fibromyalgia into real life perspective.

Fibromyalgia, to many sufferers, has been termed the ‘I hurt everywhere’ syndrome. This definition seems most easily relatable to sufferers and helps to establish common ground for discussion.

A more technical definition of fibromyalgia, however, involves breaking down the word into three pieces: ‘fibro’ describes the soft tissues in the body; ‘my/myo’ means muscles; and ‘algia’ describes pain. Together, these three pieces lead to the technical definition of fibromyalgia as ‘pain in the muscles and soft tissues of the body.’

Simply knowing what the word means, however, doesn’t mean that we fully understand fibromyalgia. To do this we need to gain a more specific understanding of how and why it comes about in the first place and what it means to the sufferer.

A Sensitive Subject

Most recently, fibromyalgia has been termed a Central Sensitivities Syndrome, or CSS for short. CSS simply means that something has caused the central nervous system to become overly sensitive. This oversensitivity has the potential to cause various symptoms. When multiple symptoms exist concurrently, the malady is then called a syndrome. Although there are many symptoms, patients most commonly report (98{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5}) widespread pain as their major concern.

Putting pain and suffering into perspective is a crucial part of understanding fibromyalgia. Pain is subjective; so what one person considers painful may not even affect another. In the past, the perception of pain was thought to exist only in one’s mind and feelings, as there didn’t seem to be any way to document evidence of pain hence nothing to measure objectivity.

It is easy for a patient to rationalize pain when they feel a sense of control.

We are gaining ground however. We know that a very real, neurological and chemical mechanism exists within the brain that actually accounts for a patient’s personal experience/interpretation of pain.

There are endless possibilities to how the nerves and chemicals in the brain can interact to form an interpretation, opinion, and reaction to any given situation. The medical world is gaining understanding of these mechanisms; however, as pain is subjective, it is doubtful that we will ever be able to truly understand each other’s experiences and pain tolerances. You can feel pain, and you can describe how you feel, but another person will never be able to experience your pain as you do.

The medical world has and continues to deal with the concept of pain as if it were purely abstract in nature. In a court of law, pain would be considered hearsay and not be admissible, as it’s impossible to document objectively hence would not be used as evidence. In a doctor’s office, however, your doctor will be the judge of whether the pain you say you feel is ‘admissible.’ Where there is evidence that your pain exists your doctor may accept it as real. Where there isn’t, your doctor may not believe that you are actually in pain. Unfortunately, some of you who are in pain may have already experienced this rejection.
At first glance, we may assume that where there is pain, there is suffering. However, we find that this is not always the case.

Suffering, when noted, is a frustration and embarrassment to the medical community. Suffering inherently suggests an emotional component. A woman in childbirth may be in great pain but not feel as though she is suffering.(1)

In The Nature of Suffering, author EJ Cassell defined suffering as “the state of severe distress, associated with evidence that threatens the intactness of a person.” We find that if a person realizes purpose in their pain and has understanding, there is hope. They then can rationalize that the pain they feel holds no threat to their intactness. It is easy for a patient to rationalize pain when they feel a sense of control hence minimizing suffering.

Fibromyalgia, however, is difficult for patients to rationalize, as it brings both pain and suffering. Patients feel pain due to the transmission of nerve signals within their brain; patients suffer because the pain is ongoing, seems out of control, and has no rhyme, reason, or purpose.

Why is it that some sufferers seem to cope with fibromyalgia better than others? A reasonable explanation may lie in interpretation. Patients with a positive attitude, who have learned mental and physical exercises to help them literally train their brain to interpret pain signals differently (it can be done!) may seem to endure the pain and cope rather well. Others may have expectations that cause them to interpret pain in a way that reduces their ability to cope.

Case and Point

For example, I had confirmed the diagnosis of FM in a 46-year old patient in 1999. She had suffered for seven years. She expressed a feeling of hopelessness because she couldn’t seem to feel the way she did when she was 24 years old: young, full of energy, healthy and happy. She felt as if there was no sense to go on living. Her expectations and attitude sabotaged her every effort to feel better. Every ounce of suffering we feel is related directly to our personal interpretation of pain signals in our brain.

Quality Living

Interpretation, is based on attitudes and expectations, that define the meaning and severity of the pain we feel and will likely determine the degree to which we suffer.

This brief explanation of the major emotional components of fibromyalgia is just one piece of the puzzle that leads to a full understanding of fibromyalgia and fibromyalgia-like conditions. However, we find that realizing the basic emotional issues surrounding the syndrome can help confused sufferers understand their complaints rather than seem to just be complaining. With new understanding communication improves, allowing doctors and patients alike to realize the pain is very real. This validation brings hope.

Dr. Robert Langone is a chiropractic physician. His postgraduate interests in neurology and nutrition have led him to specialize in fibromyalgia. His book “Fibromyalgia, It’s Not Your Fault” will be out in 2006.

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