A Guide to CIND

Turning The Spotlight on Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encelphomyelitis

A Guide to CIND

(C)opyright 1997-2001 RESCIND, Inc.

DO YOU SUFFER FROM PERSISTENT

Pain? Aching?

FATIGUE?

These are all symptoms of little-known conditions that go by the names of ME (myalgic encephalomyeletis, used in most of the world)/CFS (chronic fatigue syndrome, used in the U.S.), FMS (fibromyalgia syndrome), MCS (multiple chemical sensitivity syndrome), and GWS (gulf war syndrome). These syndromes affect significant numbers of the population, predominantly women, and are seen in all age groups, including young children. These conditions are characterized by generalized pain or aching in the connective tissues, poor sleep quality, and numerous other symptoms. These conditions are referred to as syndromes because the symptoms occur in combination. People often liken the conditions to having a very bad case of the flu or having been run over by a truck.

Many health-care professionals familiar with these syndrome suspect that they are related. For purposes of this page, we will refer to all of the above as chronic syndromes.

Although these chronic syndromes can be severe, and often disabling, conditions that affect vast numbers of people, they are often overlooked or given limited attention in facilities that train medical professionals. Because of this, many people with these chronic syndromes find themselves inappropriately referred for psychiatric evaluation. These syndromes are also frequently misdiagnosed because their symptoms mimic those of other serious conditions, such as rheumatoid arthritis, lupus, or other auto-immune diseases (i.e., the body’s tissue is attacked by the body’s own defense system, which mistakes it for foreign material). These chronic syndromes are not considered to be inflammatory or auto-immune disorders since no permanent damage is done to the body. Auto-immune disorders, however, can co-exist with these chronic syndromes. These syndromes are also considered nonprogressive, although symptoms may worsen after onset if appropriate treatment is not undertaken. Before a diagnosis of one of these syndromes can be made, other illnesses, such as those mentioned above, should be considered by your physician.

Although fibromyalgia syndrome is the only one of these syndromes with a diagnostic test at this time, an alert, competent and supportive medical professional who is familiar with these syndromes can, along with taking a careful and comprehensive history, make an educated diagnosis. For fibromyalgia syndrome, your doctor can conduct a simple “tender point” exam. If 11 of the 18 specific tender points on the body hurt when pressed, and aching or pain has persisted for more than three months, the diagnosis is confirmed.

The cause of these syndromes is not known. There is some evidence that the predisposition is hereditary. These chronic syndromes appear to be triggered in susceptible individuals by a flu-like illness, stress, abuse (emotional or physical), or trauma (such as an auto accident). It is important to note that these are not psychological disorders. Studies have demonstrated that people with these chronic syndromes are no more likely to have psychological problems than others with chronic pain or fatigue.

Severity of symptoms varies from person to person, as does response to treatment. These symptoms, which can fluctuate from day to day, include, but are not limited to:

Pain (often debilitating)
Widespread body aches
Non-restorative sleep
Fatigue (sometimes severe)
Lack of energy
Depression
Anxiety
Numbness or tingling in the arms or legs
Migraine headaches
Tension headaches
Irritable bowel
Irritable bladder
Cold intolerance
Restless legs
Cognitive problems
Irritability
Vision problems
Sinus problems
Allergies
Dryness of the eyes or mouth
Tinnitus (ringing in the ears)
Fluctuating hearing loss
Heightened sensitivities (to food, meds, light, etc.)

The Myofascial Pain Syndrome (MPS) Connection: This condition, in which pain may be extreme, can develop in muscles that are overstressed, overused or injured, and is characterized by localized “trigger points”, which are different from the “tender points” of fibromyalgia syndrome. People with these chronic syndromes may also develop myofascial pain syndrome (MPS). MPS pain from trigger points, which refer pain to other locations, is mechanical in nature. Generalized aching of these chronic syndromes is biochemical and systemic in nature. Many patients meet the criteria for both, in which case it is important that both be treated appropriately. MPS is treatable by strategies including trigger point injections, massage therapy, daily stretching, and the elimination of stressors. Proper identification and treatment of MPS is of great benefit in reducing many symptoms incorrectly attributed to these chronic syndromes. A physician knowledgeable about trigger and tender points will be able to distinguish between them reliably. A physical medicine doctor or licensed massage therapist familiar with Travell and Simons Trigger Point Manuals is the most competent health-care professional to help relieve or eliminate trigger points.

With proper treatment, many people with these chronic syndromes can learn to manage their symptoms, thereby lessening their pain and fatigue.

The first symptom generally treated is the problem of insufficient deep, quality sleep. When quality sleep is achieved, the pain level often decreases, since tissue healing takes place during deep restorative sleep. Certain medications have been found to be effective in improving the quality of sleep. Other medications have been found helpful in treating the depression and anxiety which often occurs in conjunction with these chronic syndromes. People with these syndromes frequently have unusual reactions to medications. Often, finding the right medication is a process of trial and error, which can be time-consuming and frustrating. However, it is very important that you and your health-care team actively work together in finding the right treatment or combination of treatments.

Experts agree that stretching and gentle aerobic exercise are essential. Walking, pool therapy and stationary exercise equipment are most suitable for people with these chronic syndromes. The optimum time of day for aerobic exercise is believed to be approximately five hours before bedtime. If this is not feasible, any time of day would be beneficial. Stretching can and should be done several times a day – simple things like shoulder rotation can be done in almost any setting. It is important that stretching be a part of the every-day activities of people with these chronic syndromes, since the muscles have been contracted. Frequently muscle tone has suffered as a result of inactivity or improper body mechanics. It is important that repetitive exercises not be performed, since these can exacerbate pain. Those people who cannot tolerate aerobic exercise may respond better to a program of simple basic stretches. Many people with severe pain have found water therapy in a heated pool provides some relief. Most importantly, people with these chronic syndromes need to listen to their bodies and not push too hard. A general rule of thumb is, “always stop exercising while you still could do a little more”.

Also helpful for some people with these chronic syndromes are massage done by a person familiar with the conditions, warm and soothing baths, relaxation techniques, stress reduction, proper body mechanics and posture, acupuncture, chiropractic, meditation, biofeedback, and a healthy diet. It is important to find the treatment, or combination of treatments, that is most effective for each person, since none are effective for all people with these chronic syndromes.

It is also important to avoid stressful situations, since stress intensifies symptoms. This may require lifestyle changes. The symptoms wax and wane, and many people with these chronic syndromes find it difficult to slow down and be gentle with themselves when they are feeling better. People with these chronic syndromes who are Type A personalities may mistakenly believe that they can push through the pain and fatigue, which can lead to a “flare” – a worsening of symptoms.

Helpful resources include books, videos, newsletters, and local and internet support groups. Support groups are especially useful for people with these chronic syndromes, since their condition is often invisible to their families, significant others, friends and co-workers to whom they “look normal”. In order to better cope with these sometimes debilitating conditions, people with these chronic syndromes need all the help and support they can get from others who understand what they are experiencing. Learning more about these conditions will enable you to be your own best champion.