Fibromyalgia: Unreal or Misunderstood?
EmPower Research
August 06, 2008
By Jayanti Shekhar
The Womensday.com story - Living in pain - simply does not discuss the experience of Carolyn Bishop but reflects the suffering of entire humanity from fibromyalgia.
Carolyn says in her article, "When the nurse told me that I had fibromyalgia, I started crying. Finally someone was taking me seriously. Lyrica isn´t a miracle drug, but as soon as I started taking it, I began to feel better. When my daughter too was diagnosed with fibromyalgia, she started taking Lyrica as well as a number of other drugs and supplements. I do not worry about her being on some of these drugs at such a young age… Best of all, she won´t have to spend decades in pain wondering what´s wrong."
The story inspired me to find out what actually fibromyalgia is? Why it takes decades to get diagnosed?
Fibromyalgia has been studied since the early 1800s and referred to by a variety of former names, including muscular rheumatism and fibrositis. The term fibromyalgia was coined in 1976 to describe the symptoms more accurately, from the Latin fibra (fiber) and the Greek words myo (muscle) and algos (pain).
Fibromyalgia is a human disorder classified by the presence of chronic widespread pain. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. It can affect every aspect of a person's life. While neither degenerative nor fatal, the chronic pain associated with fibromyalgia is pervasive and persistent.
Symptoms of fibromyalgia are often aggravated by unrelated illness or changes in the weather. The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, and disturbed sleep. It is often seen that those suffering from fibromyalgia will have other associated conditions and symptoms like a heightened and painful response to gentle touch (allodynia), needle-like tingling of the skin, weakness in the limbs, nerve pain, and functional bowel disturbances. Many patients also experience cognitive dysfunction. It is because of these overlapping symptoms that fibromyalgia diagnosis becomes difficult. The difficulty with diagnosing fibromyalgia is that, in most cases, laboratory testing appears normal and that many of the symptoms mimic those of other rheumatic conditions such as arthritis or osteoporosis.
In general, most doctors diagnose patients with a process called differential diagnosis, which means that doctors consider all of the possible things that might be wrong with you based on your symptoms, gender, age geographic location, medical history and other factors. They then narrow down the diagnosis down to the most likely one. The most widely accepted set of classification criteria for research purposes were elaborated in 1990 by the Multicenter Criteria Committee of the American College of Rheumatology.
According to these guidelines, to be diagnosed with fibromyalgia one must have experienced widespread aching pain for at least three months and have a minimum of 11 locations on the body that are abnormally tender under relatively mild, firm pressure. Not all doctors agree with these guidelines. Some believe that the criteria are too rigid and that one can have fibromyalgia even if you don't meet the required number of tender points. Others question how reliable and valid tender points are as a diagnostic tool.
Fibromyalgia is seen in about 2% of the general population and affects more females than males, with a ratio of 9:1 as per American College of Rheumatology (ACR) criteria. It is most commonly diagnosed in individuals between the ages of 20 and 50, though onset can occur in childhood.
Still the validity of fibromyalgia as a unique clinical entity is a matter of some contention among researchers in the field. And the January 14, New York Times article – Drug Approved. Is Disease Real? put the stage on fire. The article cited Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia. Dr. Wolfe remained skeptical of the condition and said that he now considers the condition a physical response to stress, depression, and economic and social anxiety.
It´s true that current diagnostic criteria are insufficient, but does not mean that the disease is not real.
Fibromyalgia was recognized by the American Medical Association as an illness and a cause of disability in 1987. In an article the same year, in the Journal of the American Medical Association, a physician named Dr. Don Goldenberg also called the disorder fibromyalgia. The ACR published a criterion for fibromyalgia in 1990, and developed neurohormonal mechanisms with central sensitization in the 1990s.
Even the FDA, CDC, and Mayo Clinic believe the condition to be real. Low levels of serotonin, norepinephrine, and a certain growth hormone and high levels of substance P and nerve growth factor in fibromyalgia patients support the fact.
For scientific and clinical purposes, pain is defined by the International Association for the Study of Pain (IASP) as "an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage." It is important to note that pain is subjective in nature and is defined by the person experiencing it. So, why could not fibromyalgia pain be called real, if the person says it is? Why a section of the medical community says that it´s all in their (patients´) head, it does not exist in reality? Why a drug or a company has to be blamed to treat a questionable disease?
We are in an era where we can define human disease more accurately and more uniquely and diseases are being classified by their anatomic or physiological features rather than by symptoms only.
Also, according to Dr. Jacalyn Duffin, a professor of the history of medicine at Queens University in Ontario, the shift from symptoms to anatomical measurements had big implications for patients. She says, "Up until the 18th century, you had to feel sick to be sick. But now people can be considered sick based on measurements like high blood pressure without feeling ill at all." She adds, "People who feel sick nowadays don´t get to have a disease unless the doctor can find something and instead might be told that it´s all in their head." Doctors argue, for instance, about whether fibromyalgia or chronic fatigue syndrome, which has no obvious anatomical causes, is really a disease.
It indicates our insufficiency and the agony of fibromyalgia patients when Lynne Matallana, president of the National Fibromyalgia Association, says, "The new drugs would help people accept the existence of fibromyalgia. The day that the F.D.A. approved a drug and we had a public service announcement, my pain became real to people."
It´s true that the fibromyalgia symptoms are very confusing, too unclear, and highly overlapping. Also, the degree of symptoms varies greatly from day to day with periods of flares or remission. But the actual problem is the lack of specific diagnostic criteria, due to which the disease is usually misunderstood and misdiagnosed (under diagnosed or over diagnosed).
It is anguish that the scientific community is talking about cloning a human but we do not have proper diagnostic criteria for a condition which is affecting a portion of the existing population.
Many patients are able to ease their symptoms with a combination of medication, exercise, physical therapy and relaxation, as well as other alternative therapies. So, it is the sole responsibility of medical community to develop a specific and accurate diagnostic criterion so that fibromyalgia sufferers would not have to suffer for their disease to be identified and avail proper treatment.
References:
1. New York Times- Drug Approved. Is Disease Real?- January 14, 2008 by Alex Berenson
2. New York Times- Redefining Disease, Genes And All- May 06, 2008 by Andrew Pollack
3. Woman´s Day- Living In Pain - August 2008 by Carolyn Bishop
4. http://www.mayoclinic.com/health/fibromyalgia/DS00079
5. http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp
The Womensday.com story - Living in pain - simply does not discuss the experience of Carolyn Bishop but reflects the suffering of entire humanity from fibromyalgia.
Carolyn says in her article, "When the nurse told me that I had fibromyalgia, I started crying. Finally someone was taking me seriously. Lyrica isn´t a miracle drug, but as soon as I started taking it, I began to feel better. When my daughter too was diagnosed with fibromyalgia, she started taking Lyrica as well as a number of other drugs and supplements. I do not worry about her being on some of these drugs at such a young age… Best of all, she won´t have to spend decades in pain wondering what´s wrong."
The story inspired me to find out what actually fibromyalgia is? Why it takes decades to get diagnosed?
Fibromyalgia has been studied since the early 1800s and referred to by a variety of former names, including muscular rheumatism and fibrositis. The term fibromyalgia was coined in 1976 to describe the symptoms more accurately, from the Latin fibra (fiber) and the Greek words myo (muscle) and algos (pain).
Fibromyalgia is a human disorder classified by the presence of chronic widespread pain. Fibromyalgia means pain in the muscles, ligaments, and tendons – the soft fibrous tissues in the body. It can affect every aspect of a person's life. While neither degenerative nor fatal, the chronic pain associated with fibromyalgia is pervasive and persistent.
Symptoms of fibromyalgia are often aggravated by unrelated illness or changes in the weather. The primary symptoms of fibromyalgia include widespread musculoskeletal pain, severe fatigue, and disturbed sleep. It is often seen that those suffering from fibromyalgia will have other associated conditions and symptoms like a heightened and painful response to gentle touch (allodynia), needle-like tingling of the skin, weakness in the limbs, nerve pain, and functional bowel disturbances. Many patients also experience cognitive dysfunction. It is because of these overlapping symptoms that fibromyalgia diagnosis becomes difficult. The difficulty with diagnosing fibromyalgia is that, in most cases, laboratory testing appears normal and that many of the symptoms mimic those of other rheumatic conditions such as arthritis or osteoporosis.
In general, most doctors diagnose patients with a process called differential diagnosis, which means that doctors consider all of the possible things that might be wrong with you based on your symptoms, gender, age geographic location, medical history and other factors. They then narrow down the diagnosis down to the most likely one. The most widely accepted set of classification criteria for research purposes were elaborated in 1990 by the Multicenter Criteria Committee of the American College of Rheumatology.
According to these guidelines, to be diagnosed with fibromyalgia one must have experienced widespread aching pain for at least three months and have a minimum of 11 locations on the body that are abnormally tender under relatively mild, firm pressure. Not all doctors agree with these guidelines. Some believe that the criteria are too rigid and that one can have fibromyalgia even if you don't meet the required number of tender points. Others question how reliable and valid tender points are as a diagnostic tool.
Fibromyalgia is seen in about 2% of the general population and affects more females than males, with a ratio of 9:1 as per American College of Rheumatology (ACR) criteria. It is most commonly diagnosed in individuals between the ages of 20 and 50, though onset can occur in childhood.
Still the validity of fibromyalgia as a unique clinical entity is a matter of some contention among researchers in the field. And the January 14, New York Times article – Drug Approved. Is Disease Real? put the stage on fire. The article cited Dr. Frederick Wolfe, the director of the National Databank for Rheumatic Diseases and the lead author of the 1990 paper that first defined the diagnostic guidelines for fibromyalgia. Dr. Wolfe remained skeptical of the condition and said that he now considers the condition a physical response to stress, depression, and economic and social anxiety.
It´s true that current diagnostic criteria are insufficient, but does not mean that the disease is not real.
Fibromyalgia was recognized by the American Medical Association as an illness and a cause of disability in 1987. In an article the same year, in the Journal of the American Medical Association, a physician named Dr. Don Goldenberg also called the disorder fibromyalgia. The ACR published a criterion for fibromyalgia in 1990, and developed neurohormonal mechanisms with central sensitization in the 1990s.
Even the FDA, CDC, and Mayo Clinic believe the condition to be real. Low levels of serotonin, norepinephrine, and a certain growth hormone and high levels of substance P and nerve growth factor in fibromyalgia patients support the fact.
For scientific and clinical purposes, pain is defined by the International Association for the Study of Pain (IASP) as "an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage." It is important to note that pain is subjective in nature and is defined by the person experiencing it. So, why could not fibromyalgia pain be called real, if the person says it is? Why a section of the medical community says that it´s all in their (patients´) head, it does not exist in reality? Why a drug or a company has to be blamed to treat a questionable disease?
We are in an era where we can define human disease more accurately and more uniquely and diseases are being classified by their anatomic or physiological features rather than by symptoms only.
Also, according to Dr. Jacalyn Duffin, a professor of the history of medicine at Queens University in Ontario, the shift from symptoms to anatomical measurements had big implications for patients. She says, "Up until the 18th century, you had to feel sick to be sick. But now people can be considered sick based on measurements like high blood pressure without feeling ill at all." She adds, "People who feel sick nowadays don´t get to have a disease unless the doctor can find something and instead might be told that it´s all in their head." Doctors argue, for instance, about whether fibromyalgia or chronic fatigue syndrome, which has no obvious anatomical causes, is really a disease.
It indicates our insufficiency and the agony of fibromyalgia patients when Lynne Matallana, president of the National Fibromyalgia Association, says, "The new drugs would help people accept the existence of fibromyalgia. The day that the F.D.A. approved a drug and we had a public service announcement, my pain became real to people."
It´s true that the fibromyalgia symptoms are very confusing, too unclear, and highly overlapping. Also, the degree of symptoms varies greatly from day to day with periods of flares or remission. But the actual problem is the lack of specific diagnostic criteria, due to which the disease is usually misunderstood and misdiagnosed (under diagnosed or over diagnosed).
It is anguish that the scientific community is talking about cloning a human but we do not have proper diagnostic criteria for a condition which is affecting a portion of the existing population.
Many patients are able to ease their symptoms with a combination of medication, exercise, physical therapy and relaxation, as well as other alternative therapies. So, it is the sole responsibility of medical community to develop a specific and accurate diagnostic criterion so that fibromyalgia sufferers would not have to suffer for their disease to be identified and avail proper treatment.
References:
1. New York Times- Drug Approved. Is Disease Real?- January 14, 2008 by Alex Berenson
2. New York Times- Redefining Disease, Genes And All- May 06, 2008 by Andrew Pollack
3. Woman´s Day- Living In Pain - August 2008 by Carolyn Bishop
4. http://www.mayoclinic.com/health/fibromyalgia/DS00079
5. http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp
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