What is Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome is a condition characterized primarily by prolonged, persistent, all encompassing fatigue that cannot be relieved or alleviated.  According to the Centers for Disease Control and Prevention, a diagnosis for chronic fatigue syndrome requires that the level of exhaustion is severe enough to cause at least a 50 percent decrease in the patient’s ability to participate in ordinary activities. Like most autoimmune disorders, chronic fatigue syndrome occurs more frequently in women than in men.  It usually develops between the ages of thirty and fifty. In most cases lack of energy and exercise in chronic fatigue patients can lead to unexpected weight gain, if this is a problem, a good resource is www.weightlossobesity.com

Many of the symptoms of chronic fatigue syndrome are similar to those associated with the flu, such as muscle aches, headache, and fatigue. However, with this disorder, these symptoms never actually seem to go away. The most notable symptom of chronic fatigue syndrome is a new onset of exhaustion that persists for at least six months and cannot be relieved or alleviated.  Other symptoms include forgetfulness, joint pain, low-grade fever, lymph node tenderness, muscle weakness and sore throat.  At present, chronic fatigue syndrome is treated with a combination of medications to alleviate each of the different symptoms.  A well-balanced diet and exercise are also recommended, however many patients who suffer from this condition find it difficult to prepare meals or exercise.

What Is Fibromyalgia Syndrome?

Sometimes called fibrositis, fibromyalgia syndrome is a condition characterized by widespread musculoskeletal pain and fatigue.  People with fibromyalgia also generally experience stiffness in their joints and pain in at least eleven of the eighteen tender points on the body.  These tender points are located on parts of the body such as the neck, back, buttocks, shoulders and hips.  As with chronic fatigue syndrome, more women than men are afflicted with the condition, and it usually develops sometime in adulthood. Malabsorption of nutrients is common in fibromyalgia patients. Use a product called Oxy-Powder to keep the intestines and colon clean. More information is available at  www.colon-cleanse-constipation.com . Other symptoms of fibromyalgia include diminished cognitive ability, fatigue, sleep disorders, and depression. For more help with stress and depression associated with fibromyalgia go to www.stress-anxiety-depression.org

Fibromyalgia is usually treated with a combination of dietary changes, exercises, and over the counter pain remedies. A powerful topical pain formula to help relieve the joint stiffness and pain is available at www.ghchealth.com

What’s The Difference?

Research shows that between 50 percent and 70 percent of people with fibromyalgia also display the symptoms of chronic fatigue.  The reverse is also true. Because the symptoms are so similar, the difference between one diagnosis and another often rests in the specialty and education of the diagnosing physician.

Despite their similarities, there are a few documented differences between fibromyalgia and chronic fatigue syndrome. Although the exact cause of either condition is unknown, fibromyalgia is often linked to a previous injury or physical trauma, whereas chronic fatigue syndrome usually begins with the flu or other viral infection. In addition, the severity of symptoms is different in these two conditions. Patients who suffer from fibromyalgia may experience exhaustion, but this is different from the incurable, all-encompassing fatigue of chronic fatigue syndrome. Similarly, patients with chronic fatigue syndrome may experience widespread pain but not the tender point pain characteristic of fibromyalgia.  Researchers have also found that people with fibromyalgia may have a chemical imbalance that disrupts the body’s ability to transmit and respond to pain signals.

Until researchers are able to untangle the exact fundamental biological, neurological and psychological differences between these two syndromes, their diagnosis and treatment methods may continue to be intermingled.

Diagnosing Yourself

If you think you may be suffering from chronic fatigue syndrome or fibromyalgia, it is important for you to be evaluated by a health care professional. Your doctor will take a close look at your medical history as well as your symptoms to help you determine which syndrome is at the root of your symptoms.  Be sure to discuss with your doctor any concerns you may have about your condition and the possible treatment methods you could use to work towards recovery.

• Approximately 90 percent of all fibromyalgia patients are women.
• Between 50 and 70 percent of patients with fibromyalgia also have chronic fatigue syndrome.
• The inability to absorb nutrients is common in fibromyalgia patients. Use a product called Oxy-Powder to clean the intestines – http://www.colon-cleanse-constipation.com/.
• Patients with fibromyalgia have significantly less blood flow to parts of the brain that deal with pain.
• Neck injuries increase the likelihood of developing fibromyalgia.
• Many Fibromyalgia sufferers have had a previous emotional trauma and suffer from stress, anxiety or depression. For help go to http://www.stress-anxiety-depression.org/
• Individuals with fibromyalgia have significantly higher levels of the brain chemical substance P, which helps nerve cells communicate about pain, than people who don’t suffer from fibromyalgia.
• Studies note less than normal blood flow in the skin above tender points on fibromyalgia patients.
• Fibromyalgia sufferers generally have a lower thermal pain threshold than people who do not have fibromyalgia.
• Individuals with fibromyalgia have lower blood levels of cortisol than those who do not have fibromyalgia.  A cortisol deficiency can cause fatigue, weakness, muscle pain, mood and sleep disturbances.
• Research suggests that the effects of fibromyalgia decrease over time.
• Scientists theorize that fibromyalgia is an oxidative disorder as individuals with fibromyalgia have abnormal levels of free radicals and oxidant/antioxidant balances.
• Individuals with fibromyalgia experience more oral symptoms such as lesions and  ulcerations than those who don’t suffer from the condition

In some cases lack of exercise due to pain can lead to unexpected weight gain, if this is a problem, a good resource is http://www.weightlossobesity.com/

“Contemporary Overview of Fibromyalgia,”

by Robert M. Bennett, M.D.

Research Objectives: Providing a deeper understanding about fibromyalgia

Research Conclusions: “Fibromyalgia is a syndrome of chronic widespread pain. It is a construct developed by rheumatologists to account for a common group of patients that they see in their routine practice. Indeed, fibromyalgia subjects account for 20-30% of rheumatology referrals. Epidemiological studies suggest that fibromyalgia is at one end of a spectrum of chronic widespread pain and is defined in terms of such pain plus 11 or more out of 18 tender points. The overall prevalence of fibromyalgia is 3-10%, with a 10:1 predominance in women.

The clinical spectrum of fibromyalgia is much more than a pain syndrome and commonly includes fatigue, headaches, irritable bowel syndrome, irritable bladder, restless legs, neurally mediated hypotension, psychological distress and varying levels of dysfunction. There is compelling evidence that the pain and accompanying symptoms are a manifestation of amplified sensory processing at the level of the spinal cord and brain – “central sensitization.” The disordered neurophysiology and molecular events underlying central sensitization are now being unraveled.

The events leading to the development of fibromyalgia commonly include other pain sites, injuries, infections, inflammatory diseases and persistent stress. Why only a minority of people experiencing such problems go on to develop fibromyalgia involves familial, genetic and environmental influences. The possibility that congenital abnormalities of the hindbrain (Chiari I malformation) a possible predisposing influence is of great interest to rheumatologists and patients alike. Irrespective of pathogenesis, chronic pain states have profound secondary effects in terms of altered neuroendocrine function, disordered sleep, psychological distress (especially depression) and maladaptive behavioral changes. Until there are effective treatments for central sensitization, the mainstays of fibromyalgia treatment will continue to be pain medications, cognitive behavioral therapy, gentle exercise, minimization of peripheral pain generators (e.g., myofascial trigger points), treatment of depression and disturbed sleep.

“Pain Amplifying Neurochemical Mechanisms in Fibromyalgia Syndrome (FMS),”

by I. Jon Russell, M.D., Ph.D.

Research Objective: The goal of this study was to further understand the role of neurochemicals in the symptoms of fibromyalgia.

Study: A review of the published medical literature on fibromyalgia.

Conclusion: “The widespread body pain and tenderness which characterize FMS could result from central pain amplification mediated by the neurochemicals of nociception. Abnormalities in FMS brain regional blood flow, neuroendocrine function, autonomic neural function, and intestinal dysmotility could all result from imbalances of the same neurochemicals within the central nervous system.”

Here is the five-step process for a Fibromyalgia disability explained:

STEP ONE simply determines if an individual is “working (engaging in substantial gainful activity),” according to the SSA definition. Earning more than $810 a month as an employee is enough for disqualification from receiving Social Security disability benefits.

STEP TWO implies that the Fibromyalgia disability must be severe enough to significantly limit one’s ability to perform basic work activities needed to do most jobs; for example:

• walking, standing, sitting, lifting, pushing, pulling, reaching, carrying or handling
• seeing, hearing and speaking
• understanding/carrying out and remembering simple instructions
• use of judgment
• responding appropriately to supervision, co-workers and usual work situations
• dealing with changes in a routine work setting

STEP THREE has no medical listing for Fibromyalgia. At this level of consideration the adjudicator is required to consider “equating” a medical listing. To establish Fibromyalgia as a medically determinable severe impairment there must be evidence of widespread pain present for at least three months. There must be pain present on palpation in at least 11 of the 18 tender point sites as identified by the American College of Rheumatology and the Centers for Disease Control. There must be evidence of morning stiffness and/or stiffness after sitting for a short period of time. Fatigue is to be present. To equate a medical listing the signs, symptoms and laboratory findings must be equivalent to an established listing. In most claims with a diagnosis of Fibromyalgia a finding of disabled is usually at Step 5, i.e., functional limitations so significantly erode the occupational base for sedentary work that a finding of disabled is warranted.

STEP FOUR explores the ability of an individual to perform work he has done in the past despite his Fibromyalgia disability. If SSA finds that a person can do his past work, benefits are denied. If the person cannot, then the process proceeds to the fifth and final step.

STEP FIVE looks at age, education, work experience and physical/mental condition to determine what other work, if any, the person can perform. To determine Fibromyalgia disability, SSA enlists vocational rules, which vary according to age.

For example, if a person is:

Under age 50 and, as a result of the symptoms of Fibromyalgia, unable to perform what SSA calls sedentary work, then SSA will reach a determination of disabled. Sedentary work requires the ability to lift a maximum of 10 pounds at a time, sit six hours and occasionally walk and stand two hours per eight-hour day.

Age 50 or older and, due to his Fibromyalgia disability, limited to performing sedentary work but has no work-related skills that allow him to do so, SSA will reach a determination of disabled.

Over age 60 and, due to his Fibromyalgia disability, unable to perform any of the jobs he performed in the last 15 years, SSA will likely reach a determination of disabled.

Any age and, because of Fibromyalgia, has a psychological impairment that prevents even simple, unskilled work, SSA will reach a determination of Fibromyalgia disabled.

Problems To Overcome In Receiving Social Security Disability Benefits

More than one million people will file for benefits from the Social Security Administration this year. The bad news is, 60% who apply for benefits will be denied. The good news is, help is available to improve your odds of getting benefits, should you or a loved one become disabled.

All working Americans contribute 7.65 percent from every paycheck to FICA tax. Some of that payment goes toward disability insurance coverage by the Social Security Administration. However, bureaucratic problems plaguing SSA’s Disability Insurance program prevent fair and speedy distribution of benefits to people who are eligible.

These are some of the problems you’ll face if you choose to apply by yourself:

• A backlog of more than a million unprocessed disability claims;
• An average five-month wait after filing a claim before receiving an answer on the initial claim, and almost a year of additional delays if the claim is appealed;
• A backlog of 1.5 million disability cases now awaiting review, with another half million cases coming up for review each year.

The research mission of NIAMS is broad and diverse. Progress in one area of the Institute provides important clues for research in other areas. Similarly, progress in areas supported by other NIH institutes can and does provide valuable information for diseases within the NIAMS research portfolio. That is why it is essential to support studies across the research spectrum and to encourage cross-fertilization of knowledge from experts in many disciplines. Studies on the neuroendocrine system, pain and sleep disorders, and rheumatic and autoimmune diseases all may lead to a better understanding of fibromyalgia.

Since not all the outcomes can be anticipated, and it is hard to know where scientific advances will come from, NIAMS strives to support and maintain a diverse research portfolio. This is especially important in fibromyalgia, where many areas are being developed simultaneously. Advances against fibromyalgia require both basic and clinical research projects. Because basic research appears so far removed from actual patients coping with the disease, the benefits derived from this type of research may not be so obvious.

For many diseases and conditions, including fibromyalgia, basic research must be done in order to obtain fundamental clues that direct research in humans. Basic research is usually done in systems that are simpler than the human system, so that the experimental variables can be manipulated to observe changes in structure and function. This provides a general understanding of biological events that may affect humans. Simpler organisms used include bacteria, yeast, fruit flies (Drosophila), and mice. For example, researchers study the fruit fly because it is more complex than a bacterium, but can easily be maintained in a laboratory. In addition, fruit flies have been studied for many years, and a great deal is known about their genetics, biochemistry, and behavior. Scientists recently discovered that mutations in the human version of a gene that controls fruit fly growth and development are the likely cause of both the basal cell nevus syndrome, a rare inherited disorder, and sporadic basal cell carcinoma of the skin, the most common human cancer. In terms of fibromyalgia research, studies in fruit flies may tell us which molecules link sleep and consolidation of long-term memory. Understanding this relationship in fruit flies may provide clues and research tools that will enable investigators to learn why people with chronic sleep disturbances experience problems with memory.

Why Is Behavioral Research Important to Understanding Fibromyalgia?

Behavioral and social sciences research is an important area of investigation at NIH and cuts across a wide range of research topics. NIAMS has long supported behavioral research related to many rheumatic and musculoskeletal conditions. Behavioral and social factors are significant contributors to health and illness, frequently interact with biological factors to influence health outcomes, and represent critical avenues for treatment and prevention.

Behavioral and social sciences research encompasses a wide array of disciplines. The field employs a variety of methodological approaches including surveys and questionnaires, interviews, randomized clinical trials, direct observation, physiological manipulation and recording, descriptive methods, laboratory and field experiments, standardized tests, economic analyses, statistical modeling, ethnography, and evaluation. In addition, several key crosscutting themes are characteristic of social and behavioral sciences research. These include an emphasis on theory-driven research; the search for general principles of behavioral and social functioning; the importance ascribed to a developmental, life-span perspective; an emphasis on individual variation and variation across sociodemographic categories such as gender, age, and sociocultural status; and a focus on both the social and biological context of behavior.

Behavioral and social sciences research is important to understanding how to better treat some of the clinically challenging symptoms that are experienced by fibromyalgia patients. Research opportunities include behavioral research on all aspects of fibromyalgia, including the relationships among disturbed sleep, inactivity, pain, and depression that are often observed in patients with fibromyalgia, and the development of innovative approaches for treatment.

Office of Communications and Public Liaison
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institute of Health
Bldg. 31, Room 4C02
31 Center Dr. – MSC 2350
Bethesda, MD 20892-2350
Phone: (301) 496-8190
Fax: (301) 480-2814

What Is Fibromyalgia?

Fibromyalgia is a very common illness that affects millions of Americans. It is similar to rheumatoid arthritis, in that the suffer feels constant and chronic pain. But unlike arthritis, fibromyalgia does not affect the joints. Fibromyalgia is medically defined as a condition that causes widespread pain throughout the body and pain when touched at several of the designated tender points along the body. These tender points include areas around the head, neck, shoulders, buttocks, elbows, and knees.

What Is Disability?

The Social Security Administration defines disability as “an inability to perform any substantial gainful activity because of a medically determinable physical or mental impairment which can be expected to last for a continuous period of not less than 12 months.” To further explain this definition, in Social Security terms, “substantial gainful activity” means work that “(a) involves doing significant and productive physical or mental duties; and (b) is done (or intended) for pay or profit.” You cannot receive Social Security disability benefits if you:

• Are currently working even though you are ill
• Are capable of working
• Have recovered within 12 months of the onset of a disabling illness
• Have no medically determinable impairment

How Do I File A Claim For Disability Due To Fibromyalgia?

Your health care provider should advise you of the option to file for Social Security disability benefits when as soon as it appears that you will not be able to work because of your fibromyalgia for 12 consecutive months. With this prognosis, you can begin filing the appropriate paperwork within 6 months of disease onset.

Claims for Social Security disability benefits are made at the local Social Security District Office, either in person or by telephone (800-772-1213). You can perform the initial filing yourself, alerting the government to the fact that you are unable to work, the nature of your disease, the name of your health care provider, and your vocational background. You will need to involve your physician and an attorney for the subsequent steps in the disability process.

Once you have filed your claim, the Social Security Administration (SSA) will gather information about your medical, vocational and administrative status.

• Medical Information: The SSA will request information from your health care provider on the status and prognosis of your condition, including your capacity for lifting, walking, sitting, and standing.
• Vocational Information: The SSA will ask for a description of the duties you were performing and the date you last worked.
• Administrative Information: The SSA will need you to produce proof of citizenship and any medical insurance you currently hold.

Fibromyalgia Disability: Filing For Appeal

If your initial claim for social security benefits is denied, you can appeal to have your case reconsidered. However, this appeal must be made to the Social Security Administration within 60 days of from the mailing date of your rejection. The Social Security Administration will not have a legal basis to hear the matter if the filing is late.

You may wish to consult an attorney for this portion of the filing process. The attorney will charge 25% of back benefits – moneys that would have been received if payment of benefits had begun at the onset of illness – and he or she cannot legally receive any fees without approval by the Social Security Administration.

Fibromyalgia: Requesting a Hearing

If your request for reconsideration is also denied, you may request a hearing into the matter. As with your appeal, this request must be made within 60 days of the mailing date of the appeal rejection. The request for a hearing will result in a trial before an administrative law judge. This trial will usually occur within 4 months of filing the request. You will definitely want an attorney with you to assist you in handling your case. Your attorney will work closely with both you and your health care provider to present your case before this judge. If this trial also results in a finding that you are not disabled, you can make an appeal to the Appeals Council, but this appeal must be completed within the jurisdictional 60 days. In most instances, however, the Appeals Council decision, will uphold the decision of the trial judge.

The research on fibromyalgia supported by NIAMS covers a broad spectrum from basic research to clinical studies to behavioral interventions. For example, NIAMS investigators are examining the interactions between the nervous system and the endocrine (hormonal) system and regulation of adrenal function in fibromyalgia patients. Studies have shown that abnormally low levels of the hormone cortisol may be associated with fibromyalgia. Researchers are studying regulation of the function of the adrenal glands (which make cortisol) in fibromyalgia. People whose bodies make inadequate amounts of cortisol experience many of the same symptoms as people with fibromyalgia. It is hoped that these studies will increase understanding about fibromyalgia and may suggest new ways to treat the disorder.

Basic research studies to advance our understanding of the molecular and genetic basis of sleep and sleep disorders are also included in the NIAMS research portfolio. One specific project on mice focuses on identifying genetic factors that underlie molecular events involved in the regulation of sleep. A wealth of information on the neuroanatomy, neurochemistry, and neurophysiology of sleep provides a firm foundation for a genetic approach to studies of sleep. This project will use genetics to screen for single gene mutations that affect sleep patterns in mice. Understanding this in mice will advance understanding of how this translates to humans. Other basic research studies using animal models are investigating the link between sleep and long-term memory.

Examples of NIAMS-supported clinical research in fibromyalgia include comparing pain mechanisms in this disorder and low back pain; determining if aerobic exercise benefits patients with fibromyalgia through the action of the hypothalamus and pituitary and adrenal glands; and studying neuroendocrine changes in fibromyalgia and irritable bowel syndrome. The Institute is also funding a new clinical trial to determine the effectiveness of combining two antidepressants in treating the disorder.

In addition, NIAMS is currently funding research projects related to the role of behavioral factors in fibromyalgia. Investigators are evaluating the effects of two of the most promising nonpharmacologic interventions for fibromyalgia: cognitive behavioral therapy for pain management and physical exercise training. This study is designed to test the hypothesis that combining cognitive behavioral therapy and physical training will be more effective than cognitive behavioral therapy or exercise alone. If the cognitive and exercise interventions have synergistic effects in fibromyalgia patients, future studies could evaluate this combination in patients with other rheumatic diseases, or in those with stroke or burn injuries who are experiencing pain during exercise/rehabilitation regimens.

Providing social support and education about one’s disease or disorder has been shown to be an effective means for improving the health care status of individuals with chronic diseases. Studies are currently underway focusing on patients with fibromyalgia to advance understanding of how social support and education interventions may be helpful to these patients as well.

Office of Communications and Public Liaison
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institute of Health
Bldg. 31, Room 4C02
31 Center Dr. – MSC 2350
Bethesda, MD 20892-2350
Phone: (301) 496-8190
Fax: (301) 480-2814