Wednesday, December 23, 2009

Online Patient Educational Video's of Teens and Young Adults Living with Fibromyalgia


Please visit our website to view our online video's in our patient educational programs. These video's will give you insight to the struggles teens face living and attending school with Fibromyalgia.

We also hear the difficulties/joy a 3rd grade teacher and graduate student faces: Teaching, Learning and Living with Fibromyalgia.

http://www.hffcf.org/videos.php



Saturday, November 28, 2009

Medication and Fibromyalgia Patients


Why are Fibromyalgia patients so sensitive to medications?
With Fibromyalgia, it is as if someone as turned up an amplifier within the body. Every response is amplified. Sounds, smells, sensitivity to touch and pain. All of these are overly exaggerated due to an overly sensitive central nervous system. As a result all body systems have the potential to over-respond to any stimulus presented to the body such as medications, chemical additives, perfumes, etc.

Does one drug work better than the others?
There currently is no single drug to cure Fibromyalgia and no drug is clearly superior to another. The best regimen is usually established through closely coordinated care with a physician interested in treating Fibromyalgia and its associated conditions. Often times by simply listening to the patient, the most effective medication regimen can be instituted.

Sunday, November 15, 2009

is it normal to have memory loss with Fibromyalgia?

Altered thought processing and memory loss or “Fibro Fog”, as it is commonly known, is one of the most common complaints voiced by Fibromyalgia patients. More specifically, they complain that they experience difficulty in remembering new information or details (short term memory loss) and feeling that their mind is in a fog. Fibro fog not only encompasses memory loss and cognitive impairment, but difficulties with language and learning as well. This symptom is most likely a result of chronic sleep deprivation. During a normal 8 hour night of sleep, the body will undergo the majority of its physical repair and restoration during the first 4 hours when the bulk of stage 4 sleep occurs. It’s during the second half of sleep that the body repairs and restores the mind. When an individual fails to get adequate amounts of both the first and second halves of sleep (i.e., Fibromyalgia, the elderly, hospitalized patients, especially those in intensive care units), the result most commonly observed is altered thought processing and memory loss…or in this case, fibro fog.

Symptoms of Temporomandibular Dysfunction (TMD)

The symptoms of temporomandibular dysfunction (TMD) include pain and dysfunction in the head, neck, face, and jaw. These symptoms are often multiple and varied.

If you think you may be suffering from TMD, here are a few questions you can ask yourself. However, keep in mind that a reliable diagnosis can’t be based solely on your answers to these questions. “Yes” answers just let you know that you or someone you know should seek professional advice.


• Do you hear popping, clicking, or cracking sounds when you chew?
• Do your jaws feel like they “catch”?
• Do your ears hurt?
• Do your jaws ache after eating?
• Does it seem like you cannot open your mouth as wide as you used to?
• Do you hear a grating sound (like crumpling newspaper) when you chew?
• Does it hurt to move your jaw open and sideways?
• Do you have stuffiness, pressure, or blockage in your ears?
• Do you hear a ringing or buzzing in either or both of your ears?
• Do you wake with sore facial muscles?
• Do you have frequent headaches?
• Do you experience dizziness frequently?
• Do your jaws feel tight and hard to open?
• Does your tongue go between your teeth, or do you bite on your tongue to separate your teeth?
• Do your teeth ache, and are they sensitive to cold?
• Do you clench or grind your teeth when frustrated or ­concentrating?
• Do you grind your teeth at night?
• Does your neck, the back of your head, or your shoulder hurt?
• Have you been hit in the jaw?
• Have you been put to sleep for surgery?
• Have you had a whiplash injury?
• Have you seen a neurologist, chiropractor, psychologist, or psychiatrist for unexplained head or neck pain?
• Are you under a lot of stress?


If you answered “Yes” to any of the questions on the list, you might be suffering with some form of TMD. The more “Yes” answers, the greater the odds of it.

Musculoskeletal Disorders
TMD is a musculoskeletal disorder, which means that it affects muscles and bones. Sometimes people refer to TMD as TMJ, the correct term, as recommended by the American Dental Association, is TMD, or temporomandibular disorders.


Musculoskeletal disorders are the most prevalent cause of chronic health problems, disabilities, and health care utilization. They are the second most common reason for restricting activity and consuming medication.

Temporomandibular disorders are not adequately recognized by the medical community and are reported by a large proportion of fibromyalgia patients. Both TMD and fibromyalgia affect the muscles of the face, head, neck, shoulders, and back. Unfortunately, both TMD and fibromyalgia often go undiagnosed.

Eighty-five percent of people who suffer from fibromyalgia also suffer from TMD. We see the disorder most frequently in women between the ages of 20 and 50. In 1993 I studied 400 TMD patients and found that 5–6% of them had symptoms similar to fibromyalgia symptoms.

Saturday, November 7, 2009

Chronic Pain Harms the Brain

People with unrelenting pain don't only suffer from the nonstop sensation of throbbing pain. They also have trouble sleeping, are often depressed, anxious and even have difficulty making simple decisions.

In a new study, investigators at Northwestern University's School of Medicine have identified a clue that may explain how suffering long-term pain could trigger these other pain-related symptoms.

Researchers found that in a healthy brain all the regions exist in a state of equilibrium. When one region is active, the others quiet down. But in people with chronic pain, a front region of the cortex mostly associated with emotion "never shuts up," said Dante,lead author and associate research professor of physiology at the Feinberg School. The region is stuck on full throttle, wearing out neurons and altering their connections to each other.

"The areas that are affected fail to deactivate when they should Chialvo said.
This is the first demonstration of brain disturbances in chronic pain patients not directly related to the sensation of pain. The study was published in, The Journal of Neuroscience.

Chialvo and colleagues used functional magnetic resonance imaging to scan the brains of people with chronic low back pain and a group of pain-free volunteers while both groups were tracking a moving bar on a computer screen. The study showed the pain sufferers performed the task well but at the expense of using their brain differently than the pain-free group Chialvo, said.

When certain parts of the cortex were activated in the pain-free group, some others were deactivated, maintaining a cooperative equilibrium between the regions. This equilibrium also is known as the resting state network of the brain. In the chronic pain group, however, one of the nodes of this network did not quiet down as it did in the pain-free subjects.

This constant firing of neurons in these regions of the brain could cause permanent damage,Chialvo said. "We know when neurons fire too much they may change their connections with other neurons and or even die because they can't sustain high activity for so long," he explained.

If you are a chronic pain patient, you have pain 24 hours a day, seven days a week, every minute of your life, Chialvo said. "That permanent perception of pain in your brain makes these areas in your brain continuously active. This continuous dysfunction in the equilibrium of the brain can change the wiring forever and could hurt the brain."

Chialvo hypothesized the subsequent changes in wiring "may make it harder for you to make a decision or be in a good mood to get up in the morning. It could be that pain produces depression and the other reported abnormalities because it disturbs the balance of the brain as a whole."
He said his findings show it is essential to study new approaches to treat patients not just to control their pain but also to evaluate and prevent the dysfunction that may be generated in the brain by the chronic pain.

Monday, November 2, 2009

Rheumatologists debate whether fibromyalgia is really a disease

What defines a “disease?” At what point does a collection of symptoms and causes make the transition from “condition” to disease? Is it when a consensus forms around a concrete, observable, and repeatable set of biochemical and/or physiological processes and outcomes? Surely there is little doubt that diabetes or hypertension qualify as a disease under the standard paradigm. But what of the quite large range of complex chronic conditions for which there is no known cause (almost all autoimmune inflammatory diseases, for example)? How do patients, the medical community, and society decide what gets to be called a disease, and how does that process inform the ways in which we treat the patients who have the disease?

On Monday, October 19, at the 2009 American College of Rheumatology/Association of Rheumatology Health Professionals, Anthony Russell, MD, and Leslie Crofford, MD, debated whether fibromyalgia is a true disease, and discussed the best way to approach patients who present with the characteristic symptoms.

Russell basically took the position that fibromyalgia does not rise to the level of discrete, measurable, observable disease, instead preferring to view it as a social disorder that is determined by societal, historical, and other factors and contexts. “Is fibromyalgia the cause of suffering or a term used to describe it, equivalent to chronic somataform disorder?’” he asked. He spent much of his allotted time discussing the phenomenon of how the label we attach to a disease or condition, and how our perception of that disease, changes over time. This mutability of language and perception, and the need that patients and clinicians have to give a name to the cause of illness or distress, what Russell referred to as pathoplasticity, has led to a whole host of loose collections of commonly experienced symptoms to be elevated to the status of disease.
Russell returned several times to the concept of memes and the important ways that our social context leads us to identify, characterize, and communicate about the causes of sickness, pain, and anguish. This can build up a kind of critical mass in our collective conscious and lead to the phenomenon Russell called “diagnosis of the month.” He pointed to sick building syndrome and multiple chemical sensitivity syndrome as other examples of this. We will go to great lengths, he said, to try to explain and put a name to medically unexplained symptoms.


Leslie Crofford, MD, began by asking the audience, “If fibromyalgia is ‘disease,’ what is the role of rheumatologists in the diagnosis and management of patients with fibromyalgia?” Crofford said that a disease is any abnormal condition that impairs bodily function and is associated with specific symptoms or signs. She asked, “Do you need to have a cause to have a disease?” and pointed to several chronic diseases with no known cause (including the aforementioned autoimmune inflammatory diseases). Other questions to consider as part of this slippery process of naming a disease: When does a patient have a disease that needs to be acknowledged? Who decides and why?

Crofford said that she thinks the debate over “disease or not” boils down to whether professionals can recognize a common set of symptoms and signs, whether patients with these symptoms have anything in common (genetic factors, triggering factors, psychologic changes), and whether patients benefit from understanding the nature of the symptoms and display a predictable response to rational treatment.

She said that, whatever their flaws, the ACR criteria for fibromyalgia identify a discrete group of patients, and that patients meeting ACR criteria for fibromyalgia exist on a spectrum regarding symptom domains, heavily weighted to psychological distress & coping issues. She also identified three key categories of information to consider:

Etiology: Genetic vulnerability factors for fibromyalgia are likely shared with depression, anxiety, and chronic regional pain syndromes. Trigger for fibromyalgia , both physical and psychological, can be identified. The physiology of central pain and biochemical alterations in the cerebrospinal fluid have been identified.

Treatment: Developing a treatment plan requires that the patient have a conceptual framework of their condition (the first step of which is being able to put a name to the cause of their affliction). Most patients seem to do better with non-pharmacologic treatments in which they can participate (the self-actualizing patient). Patients treated with pharmacologic interventions tend to do better when treatments address central rather than peripheral targets.

Approach to patient: Although there is some concern that labeling patients with a disease makes them worse, there is no evidence supporting this.

In closing, she said clinicians should remember that whatever their position is in the disease/not a disease debate, they need to be aware that their patients have symptoms that adversely affect their quality of life and/or function, and they deserve thoughtful consideration. While acknowledging the abilities of primary care physicians and other healthcare professionals to treat patients with fibromyalgia, Crofford said the rheumatologists are uniquely trained and qualified to evaluate these patients, provide the best information, and devise the most effective treatment plan that meets the unique needs of each individual patient.

Sunday, November 1, 2009

Mind Body Approaches for Fibromyalgia

Mind–body approaches begin by recognizing that fibromyalgia is a real medical disorder, accompanied by measurable changes in a variety of biological systems. Fibromyalgia has dramatic effects on the body and the mind of the patient. Until quite recently, many patients could not persuade their physicians to believe in the reality of their symptoms. The term fibromyalgia was used in a disparaging way, and many health care professionals believed that the majority of fibro­myalgia patients’ symptoms were either imaginary or a byproduct of depression.

In fact, fibromyalgia is not new and is not imaginary. It was first described by Dr. William Balfour, a Scottish surgeon at the University of Edinburgh, in 1816. Yet fibromyalgia was not officially recognized as an illness by the American Medical Association until 1987, and as a syndrome by the World Health Organization until 1993. Modern systematic diagnostic criteria were developed by the American College of Rheumatology in 1990, and the current official definition was created by an international conference of physicians and researchers in Copenhagen in 1992. The “Copenhagen Declaration” document recognized that fibromyalgia is the most common cause of widespread musculoskeletal pain.

Mind–body therapies for fibromyalgia include sleep hygiene, exercise, biofeedback, progressive muscle relaxation, neurofeedback, audio-visual entrainment, heart rate variability training, relaxation skills, hypnosis, and imagery training.

The Signs and Symptoms of Fibromyalgia
Fibromyalgia literally means “pain in the fiber of the muscles.” The most prominent feature of fibromyalgia is the presence of pain throughout the musculature, often burning, either constant or recurrent, and varying in severity. However, the muscle pain is often confusing to the patient and the health practitioner, because the pain fades and intensifies, and changes location within the body, without a clear trigger. The pain often (not always) begins at the site of an injury, but becomes systemic, spreading around the entire musculature. Over time the entire musculature shows changes, including hyperalgesia—extreme sensitivity to exertion, strain, or trauma, with many routine activities triggering intense and severe pain.


Further, the muscular pain is accompanied by a confusing variety of seemingly unrelated symptoms. Patients frequently report fatigue, low energy, sleep disturbance, morning stiffness, symptoms of irritable bowel syndrome, emotional symptoms such as depression and anxiety, and cognitive deficits such as poor concentration, impaired memory, and a clouding of their consciousness (“fibro-fog”).

Mechanisms of Fibromyalgia Addressed by Mind–Body Therapies
The baffling and fluctuating pattern of muscle pain, and the wide range of accompanying symptoms, tells us that fibromyalgia is not a local muscle problem.

Chronobiological Disturbance
One view is that fibromyalgia is a “chronobiological disorder.” It involves changes in basic biological rhythms. The sleep–wake cycle is disturbed in fibromyalgia patients, so that patients experience difficulty falling asleep, frequent awakening, early morning awakening, and chronic low energy and loss of interest in activity. Sleep studies show a lack of the deeper delta range sleep necessary to refresh the person physically and emotionally. Many individuals display a serious disorganization of the sleep cycle, with brief intermittent periods of fitful restless sleep throughout the day and night. The resultant sleep deprivation contributes substantially to disturbance in a variety of biological and psychological functions, including brain rhythms and mood.


Muscle Dysfunction
Individuals with fibromyalgia show a number of abnormal patterns in muscle physiology. Stuart Donaldson, a researcher in Calgary, Alberta, has identified several key patterns in the muscles of fibromyalgia patients:
• High basal levels of muscle tension, even at rest
• Asymmetries—higher levels of muscle tension in the same muscle on one side of the body than on the other
• Co-activations—muscles that are not functionally involved in a movement tense anyway during activity
• Failure to recover after exertion—muscles do not relax again following use
• Long-term atrophy of muscle tissue, with shortening of muscle fibers and increased sensitivity


Many of these abnormalities make sense, in terms of the patient’s body reacting to the presence of pain. When human beings feel pain, they tense and brace against the pain. Sometimes they will twist their posture defensively around the pain site. Finally, the tensed torso and musculature lose flexibility, and, for example, when the individual in pain moves his or her head, large areas of the torso musculature will tense and activate as well. In addition, individuals in severe pain avoid activity to minimize pain. This results in a muscle disuse syndrome, which includes the atrophy of muscle tissue and muscle deconditioning, and the loss of flexibility and strength.

Abnormal Patterns in the Brain and Nervous System
Sleep disturbance, which is so characteristic of fibromyalgia, is associated with a disturbance in the electrical rhythms of the brain. The presence of excessive amounts of alpha activity (8–12 cycles per second) during sleep is associated with the absence of restorative, restful sleep in fibromyalgia patients. Many fibromyalgia patients fail to reach the deeper delta rhythms (1–3 cycles per second) that mark restorative sleep. During the deepest stages of sleep the muscles are able to completely relax. Sleep disturbance, and especially the absence of deep restorative sleep, contributes to the presence of pain and clinical depression in fibromyalgia.


Autonomic Dysfunction
Many individuals with fibromyalgia show chronic disturbances in the functioning of the autonomic nervous system that regulates many of the internal functions of their bodies. The autonomic nervous system (ANS) is commonly known as the involuntary nervous system, and is responsible for regulating blood pressure, heart rate, skin sweating, core temperature, and digestion. The ANS is made of two parts, the stimulating part, known as the sympathetic nervous system, and the calming part, known as the parasympathetic nervous system. Several research studies have reported an over-activation of the sympathetic nervous system in people with fibromyalgia. When the sympathetic nervous system is activated in someone who has fibromyalgia, their muscles contract, causing increased pain. Sympathetic activation also provokes the familiar biological “fight or flight response” in the face of threat or danger; this is the body’s means of mobilizing to fight danger. However, this sympathetic activation can also become chronic and habitual, producing physiological fatigue, depletion of coping resources, and impaired immune function.


Precipitating Factors or Events Leading to the Onset of Fibromyalgia
Primary fibromyalgia occurs spontaneously in individuals not suffering from any related or triggering condition. There is no clear cause for “primary fibromyalgia,” but over time the severity of primary fibromyalgia is affected by factors such as sleep deprivation, muscle atrophy, emotional stress, coping style, the weather, and of course, the pain itself. The course tends to be chronic, with unpredictable periods of greater and lesser severity.


Secondary fibromyalgia occurs in patients whose pain was preceded or triggered by another illness, such as arthritis, bursitis, or lupus, or from abnormal structural conditions such as disc tears and herniations, and nerve entrapments. The course and appearance of secondary fibromyalgia is very similar to primary fibromyalgia. The picture is complicated because the patient’s other illness or illnesses continue to cause symptoms and require treatment. It is often a difficult medical challenge to know when a triggering factor, such as a disc herniation, should be addressed surgically or whether other pain control methods should be pursued. A great many patients with fibromyalgia respond poorly to surgery, so it has been suggested by some experts that, for fibromyalgia patients, nonsurgical options should be the first course of action when conditions permit.

Finally, post-traumatic fibromyalgia begins with a specific injury, often one with localized pain. Over time the more widespread pattern of fibromyalgia pain develops and the other symptoms of fibromyalgia emerge. The intervention plan must include treating and rehabilitating the original injury, as well as treating and rehabilitating the individual for fibromyalgia. The patient may also continue to suffer fibromyalgia symptoms even if the original injury heals. This occurs when the body reacts to the pain of the fibromyalgia as it did with the post-traumatic injury, by producing more pain—via muscle dysfunction, sleep disturbance, and so on.