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Definition

A great deal of debate has surrounded the issue of how best to define CFS. In an effort to resolve these issues, an international panel of CFS research experts convened in 1994 to draft a definition of CFS that would be useful both to researchers studying the illness and to clinicians diagnosing it. In essence, in order to receive a diagnosis of chronic fatigue syndrome, a patient must satisfy two criteria:

1. Have severe chronic fatigue of six months or longer duration with other known medical conditions excluded by clinical diagnosis; and
2. Concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours.

The symptoms must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue.

Other Commonly Observed Symptoms in CFS

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequencies of occurrence of these symptoms vary from 20% to 50% among CFS patients. They include abdominal pain, alcohol intolerance, bloating, chest pain, chronic cough, diarrhea, dizziness, dry eyes or mouth, earaches, irregular heartbeat, jaw pain, morning stiffness, nausea, night sweats, psychological problems (depression, irritability, anxiety, panic attacks), shortness of breath, skin sensations, tingling sensations, and weight loss. These symptoms do not contribute to the diagnosis of CFS.

Symptoms

Chronic fatigue syndrome can be misdiagnosed or overlooked because its symptoms are common to other many disorders. Fatigue, for instance, is found in hundreds of illnesses. The nature of the symptoms, however, can help distinguish CFS from other illnesses.

Primary Symptoms

As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, it's not the kind of fatigue we experience after a particularly busy day or week, after a sleepless night or after a single stressful event. It's a severe, incapacitating fatigue that isn't improved by bed rest and that may be worsened by physical or mental activity. It's an all-encompassing fatigue that results in a dramatic decline in both activity level and stamina.

People with CFS function at a significantly lower level of activity than they were capable of prior to becoming ill. The illness results in a substantial reduction in occupational (work-related), personal, social or educational activities.

The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include:

* difficulties with memory and concentration
* problems with sleep
* persistent muscle pain
* joint pain (without redness or swelling)
* headaches
* tender lymph nodes
* increased malaise (fatigue and sickness) following exertion
* sore throat

Other Symptoms

The symptoms listed above are the symptoms used to diagnose this illness. However, many CFS patients may experience other symptoms, including:

* irritable bowel
* depression or psychological problems (irritability, mood swings, anxiety, panic attacks)
* chills and night sweats
* visual disturbances (blurring, sensitivity to light, eye pain)
* allergies or sensitivities to foods, odors, chemicals, medications or noise
* brain fog (feeling like you're in a mental fog)
* difficulty maintaining upright position, dizziness, balance problems or fainting

It's important to tell your health care professional if you're experiencing any of these symptoms. They may be related to CFS, or they may indicate that you have another treatable disorder. Only a health care professional can diagnose CFS.

What's the clinical course of CFS?

The severity of CFS varies from patient to patient, with some people able to maintain fairly active lives. For most symptomatic patients, however, CFS significantly limits work, school and family activities.

While symptoms vary from person to person in number, type and severity, all CFS patients are functionally impaired to some degree. CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.

CFS often follows a cyclical course, alternating between periods of illness and relative well-being. Some patients experience partial or complete remission of symptoms during the course of the illness, but symptoms often reoccur. This pattern of remission and relapse makes CFS especially hard for patients to manage. Patients who are in remission may be tempted to overdo activities when they're feeling better, which can actually cause a relapse.

The percentage of CFS patients who recover is unknown, but there is some evidence to indicate that the sooner a person is treated, the better the chance of improvement. This means early diagnosis and treatment are important.

Who's at Risk?

More than one million Americans have CFS. This illness strikes more people in the United States than multiple sclerosis, lupus, lung cancer or ovarian cancer.

Researchers continue to explore possible causes and risk factors for CFS. Many questions remain, but there are some characteristics that may help indicate who is most at risk for CFS:

* CFS occurs four times more frequently in women than in men, although people of either gender can develop the disease.

* The illness occurs most often in people in their 40s and 50s, but people of all ages can get CFS.

* CFS is less common in children than in adults. Studies suggest that CFS is more prevalent in adolescents than in younger children.

* CFS occurs in all ethnic and racial groups, and in countries around the world. Research indicates that CFS is at least as common among African Americans and Hispanics as it is among Caucasians.

* People of all income levels can develop CFS .

* CFS is sometimes seen in members of the same family, but there's no evidence that it's contagious. Instead, there may be a familial or genetic link. Further research is needed to explore this.

Diagnosing CFS

Diagnostic Challenges

Diagnosing chronic fatigue syndrome (CFS) can be complicated by a number of factors: 1) there's no diagnostic laboratory test or biomarker for CFS, 2) fatigue and other symptoms of CFS are common to many illnesses, 3) CFS is an invisible illness and many patients don't look sick, 4) the illness has a pattern of remission and relapse, 5) symptoms vary from person to person in type, number and severity, and 6) no two CFS patients have exactly the same symptom set.

These factors have contributed to an alarmingly low diagnosis rate. Of the four million Americans who have CFS, less than 20% have been diagnosed.

Clinical Evaluation

Because there is no blood test, brain scan or other lab test to diagnose CFS, it's a diagnosis of exclusion. Your health care professional will first take a detailed patient history, including a review of medications that could be causing your fatigue. A thorough physical and mental status examination will also be performed. Next, a battery of laboratory screening tests will be ordered to help identify or rule out other possible causes of your symptoms. Your professional may also order additional tests to follow up on results of the initial screening tests.

Diagnostic Criteria

Your clinician should consider a diagnosis of CFS if these two criteria are met:

1. Unexplained, persistent fatigue that's not due to ongoing exertion, isn't substantially relieved by rest, is of new onset (not lifelong) and results in a significant rEducation in previous levels of activity.

2. Four or more of the following symptoms are present for six months or more:
* Impaired memory or concentration
* Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
* Unrefreshing sleep
* Muscle pain
* Multijoint pain without swelling or redness
* Headaches of a new type or severity
* Sore throat that's frequent or recurring
* Tender cervical or axillary lymph nodes

Exclusionary Conditions

Chronic fatigue syndrome can resemble many other illnesses, including mononucleosis, chronic Lyme disease, lupus, multiple sclerosis, fibromyalgia, primary sleep disorders, severe obesity and major depressive disorders. Medications can also cause side effects that mimic the symptoms of CFS.

Because CFS can resemble many other disorders, it's important not to self-diagnose CFS. It's not uncommon for people to mistakenly assume they have chronic fatigue syndrome when they have another illness that needs to be treated. If you have CFS symptoms, consult a health care professional to determine if any other conditions are responsible for your symptoms. A CFS diagnosis can be made only after other conditions have been excluded.

It's also important not to delay seeking a diagnosis and medical care. CDC research suggests that early diagnosis and treatment of CFS can increase the likelihood of improvement.

Treatment Options

Introduction

Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure yet, no prescription drugs have been developed specifically for CFS, and symptoms vary considerably over time. These factors complicate the treatment picture and require you and your health care team to constantly monitor and frequently revise treatment strategies.

It may take some time to find a combination of traditional and alternative therapies that works for you, but it’s important not to delay symptom management. For instance, untreated sleep problems can actually make other symptoms—like pain and memory problems—worse.

One key to managing CFS is working with your doctor and other health care practitioners to create an individualized treatment program for you. This program should be based on a combination of therapies that address coping techniques, symptoms and activity management.

A multidisciplinary team of health care professionals working together to develop this individualized care plan is ideal. This team might include physicians and other primary care professionals, mental health professionals, rehabilitation specialists and physical or exercise therapists. Other professionals, like a sleep therapist or dietician, can be added as needed, and you may only need one or two consultations with such specialists.

If you live in an area where you don’t have access to specialists, or if your insurance professional doesn’t cover such consultations, you can still work with your primary care professionals to develop an effective treatment plan.

Coping with CFS

Living with chronic fatigue syndrome can be difficult. Like other debilitating chronic illnesses, CFS can have a profound impact on daily life, requiring patients to make significant lifestyle changes and adapt to a series of new limitations.

Common Difficulties

Common difficulties for CFS patients include problems coping with:

* the severe, changing and unpredictable symptoms of varying severity
* a decrease in stamina that interferes with activities of daily living
* memory and concentration problems that seriously impact work or school performance
* an uncertain prognosis that makes it hard to plan for the future
* loss of independence, livelihood and economic security
* alterations in relationships with family and friends
* worries raising children
* concerns about the potential impact of decreased sexual activity on intimate relationships
* skepticism and misconceptions about the illness

Feelings of anger, guilt, anxiety, isolation and abandonment are common in CFS patients. While it's normal to have such feelings, unresolved emotions and stress can make symptoms worse, interfere with pharmacological therapies and make recovery harder. It's important for patients to acknowledge the life-altering changes imposed by their illness and to develop effective coping strategies to deal with these changes.

Professional Counseling

Consulting a trained professional will help most patients build effective coping skills. A supportive counselor can help you cope with the prospects of long-term illness, as well as the anxiety, depression, grief, anger and guilt that often accompany chronic illness. A competent therapist, using problem-solving techniques and standard psychotherapy and counseling methods, can help you work through these issues. In some cases, a therapist may recommend a combination of medication and psychotherapy.

Because chronic illnesses like CFS impact the entire family, not just the patient, you may want to consider family education and counseling. Consulting a behavioral health professional may be helpful to address changes in family dynamics related to living with CFS.

Cognitive Behavioral Therapy (CBT)

Cognitive behavioral therapy, or CBT, is often prescribed to help chronically ill patients cope with illness and develop behaviors and strategies that help alleviate symptoms. It has been successful in helping patients with cardiovascular disease, diabetes and cancer, and recent studies indicate that CBT can be useful in treating some CFS patients.

CBT is frequently prescribed as part of therapeutic process; it help patients learn to manage activity levels, stress and symptoms. Optimally, CBT can help you better adapt to the impact of CFS and improve your level of function and quality of life.

Symptomatic Treatment

People with CFS present with different patterns of primary symptoms. Symptom severity can also vary considerably. Clinicians should query patients about which symptoms are most disruptive or disabling and tailor the management plan accordingly. Treatment can be directed toward the most problematic symptoms as prioritized by the patient, but only after underlying conditions applicable to those symptoms have been investigated and excluded.

Primary symptoms may include sleep problems, muscle and joint pain, cognitive dysfunction, fatigue, headaches and sore throat. Gastrointestinal complaints, orthostatic instability, depression and allergies are also seen in many patients. Aggressive symptom management for these and other disruptive symptoms is indicated.

Alternative Therapies

Deep breathing and muscle relaxation techniques, massage and healing touch, and movement therapies like stretching, yoga and tai chi can be beneficial for some CFS patients in reducing anxiety and promoting a sense of well-being.

Be sure to discuss all potential alternative therapies with your health care professional since many so-called cures and treatments for CFS that are promoted on the Internet are unproven and could be dangerous.

Support Groups

Many people with CFS find it therapeutic to meet with other people who have this illness. Support groups can provide patients with useful, current information, and they can provide a sense of community with people who understand what you're going through.

Managing Activity and Exercise

Avoiding Extremes

For patients with CFS, learning to manage activity levels is key to managing the illness itself. This requires a new way of defining exercise. While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can't tolerate traditional exercise routines. Exercise programs aimed at optimizing aerobic capacity are not recommended.

The majority of people with CFS are affected by postexertional malaise, which is defined as an exacerbation of symptoms following physical or mental exertion, with symptoms typically worsening 12-48 hours after activity and lasting for days or even weeks. It's important, however, not to avoid activity and exercise altogether. Such avoidance leads to serious deconditioning and can actually worsen other symptoms. It's also important not to engage in an endless "push-crash" cycle in which patients do too much, crash, rest, start to feel a little better, do too much again, and so on.

Instead, CFS patients must learn to pace activities and work with their health care professionals to create an individualized exercise program that focuses on interval activity or graded exercise. The goal is to balance rest and activity to avoid both deconditioning from lack of activity and flare-ups of illness due to overexertion. Effective activity management may help improve mood, sleep, pain and other symptoms so patients can function better and engage in activities of daily living.

Developing an Exercise Program

It is imperative that any activity plan be started slowly and increased gradually. When beginning an activity program, some CFS patients may only be able to exercise for as little as a few minutes Patients who are severely deconditioned or who are caught in the "push-crash" cycle should limit themselves to the basic activities of daily living - getting up, personal hygiene, dressing, essential tasks - until they have stabilized.

Several daily sessions of brief, low-impact activity can then be added. Simple stretching and strengthening exercise using only body weight for resistance is a good starting place for most people with CFS. All exercise needs to be followed by a rest period at a 1:3 ratio, exercising for one minute, then resting for three minutes. These sessions can be slowly increased by one to five minutes a week as tolerance develops.

Daily exercise can be divided into two or more sessions to avoid symptom flare-ups. Activity should be intermittent, brief, spread throughout the day and followed by rest. If patients experience a worsening of symptoms, they should return to the most recent manageable level of activity.

Strength and conditioning exercises are an important component of the overall activity program. Standard rehabilitative methods, such as resistance training and flexibility exercises, may help improve stamina and function, increase strength and flexibility, reduce pain and increase range of motion.

Activity should begin slowly with simple stretching and strengthening exercises. Examples of functional exercises include repeated hand stretches, sitting and standing, wall push-ups or picking up and grasping objects. Patients can begin with a set of two to four repetitions, building to a maximum of eight repetitions. Once this stage is mastered, resistance band exercises can be added to build strength and flexibility. Patients should be careful to adhere to the principle of brief intervals of exercise, followed by adequate rest, to avoid postexertional malaise.

Severely Ill Patients

A subset of people with CFS are so severely ill that they're largely housebound or bedbound. They require special attention, including a modified approach to exercise. Hand stretches and picking up and grasping objects may be all that can be managed at first. Gradually increasing activity to the point patients can handle essential activities of daily living-getting up, personal hygiene and dressing-is the next step.

A realistic goal with severely ill patients is focusing on improving flexibility and minimizing the impact of deconditioning so they can increase function enough to manage basic activities.

Source:
Centers for Disease Control and Prevention
http://www.cdc.gov/cfs/

Lwilliams · Guest

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