ICU (Invisible Chronic Illness)
1. Arthritis

What is it? Arthritis refers to more than 100 different conditions that cause fatigue, inflammation, swelling, stiffness, and pain particularly in the joints. Included in the list of arthritis related conditions are lupus, fibromyalgia, osteoporosis, scleroderma, Sjogren’s syndrome, Reiter’s syndrome, and gout. The two most known forms of arthritis are osteoarthritis and rheumatoid arthritis. For many people osteoarthritis is part of the aging process: the gradual wear and tear on joints, especially the hips, knees, and spine. Osteoarthritis causes a breakdown of joint cartilage resulting in pain and loss of movement in the affected joints. Rheumatoid arthritis is an autoimmune disease and is less common than osteoarthritis. It usually causes damage symmetrically –ex., in both knees. A systemic disease, rheumatoid arthritis may involve other parts of the body.

Who gets it? Arthritis affects about 90 million Americans. People of all ages are affected by arthritis. Nearly 75 percent of the people who have osteoarthritis and rheumatoid arthritis are women. In general, rheumatoid arthritis starts between ages twenty and forty-five, while osteoarthritis primarily affects people after the age of sixty-five. Juvenile arthritis typically occurs in children between ages two and five and afflicts girls far more often than boys.

2. Charcot-Marie-Tooth Disease

What is it? Charcot-Marie-Tooth disease (also known as hereditary motorsensory neuropathy and peroneal muscular atrophy) is a hereditary disorder of the peripheral nervous system. Slow degeneration of the nerves cause impairment of normal use of legs, arms, and hands. The result of nerve degeneration is muscle wasting. Sensory perception is affected, making it difficult to feel hot and cold in the body’s extremities. Fine movement of the hands, such as in writing, becomes increasingly difficult for some people. A high arched foot is one of the first signs of the presence of CMT. Symptoms include the arched food, diminished sense of touch, pes cavus foot (foot drop and hammer toes), and in some cases chronic pain and fatigue. CMT is classified as Type I or Type II. In general, the two types are similar in presentation: they differ in nerve conduction velocities (speed with which messages are communicated in the peripheral nervous system). The severity of illness varies widely, even within the same family, although men tend to suffer more severe disability than women. People with CMT typically have a normal life span.

Who gets it? Men, women, and children are afflicted with CMT. It is inherited in an autosomal dominant pattern. In other words, there is a 50 percent chance that the illness will be passed on if one parent has the disease. Carrying the CMT trait does not predictably lead to the onset of symptoms. 125,000 people in the US are diagnosed with CMT.

3. Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)

What is it? Chronic fatigue immune dysfunction syndrome (CDIFS) is also referred to as chronic fatigue syndrome (CFS), chronic infectious mononucleosis, myalgic encephalomyelitis (ME) in England, Canada, New Zealand, and Australia. It has been derogatorily called “yuppie flu”. Research suggests that CFIDS is an immune dysfunction disorder triggered by a viral illness. The outstanding symptom of CFIDS is chronic fatigue. Fatigue, however, is only one of a complex constellation of symptoms, which include swollen and painful lymph glands, sleep disturbances, headaches, cognitive impairment (memory loss, confusion, decrease in ability to concentrate), and low grade fever. Symptoms come and go; they may velar up in six months or persist for years. CFIDS does not result in death. In some instances people with CFIDS spontaneously recover. The Centers of Disease Control have produced a provisional “working case definition” of CFIDS to guide physicians in the diagnosis of this illness. As of yet, there is no conclusive evidence of a specific cause of CFIDS, there is no lab test to identify the marker of CFIDS in the body.

Who gets it? Women are more typically affected by CFIDS than men, though both sexes are susceptible to the illness. People tend to contract the illness between the ages of twenty and forty.

4. Endometriosis (ENDO)

What is it? Endometriosis is a disease that involves endometrium, the tissue that lines the uterus. Normally this tissue builds up only in the uterus and is shed each month during menstruation. In women who have endometriosis, the endometrium also implants itself outside the uterus. The abnormal growths of endometrium can be found almost anywhere in the body but are typically found in the fallopian tubes, ovaries, bowel, bladder, and outer surface of the uterus. Not as usual are growths outside the abdominal cavity, such as in the rectum, external glands, lungs, arms, legs, and thighs. During the menstrual cycle, as the endometrium increases in the uterine cavity, the ectopic growths also build up outside the uterus. While the endometrium lining is eliminated from the uterus, these growths have no way of shedding the blood. The result is inflammation of the surrounding tissue and scar formation. If the growths are large, they can rupture or cause blockage in the bladder and bowel. As with the other ICI’s, the symptoms of endometriosis vary in kind and intensity from woman to woman. The symptoms include painful menstruation, painful intercourse, chronic pain (in the back, legs, gastrointestinal tract, and urinary tract), heavy and irregular bleeding, chronic fatigue, and infertility. The cause of endometriosis is unknown. A number of theories proposed and under investigation include a genetic predisposition for the disease and the possibility that remains from the embryonic stage develop later into adulthood into endometrium. The most widely held theory as to the cause of the illness is retrograde flow, that is, endometrial tissue that is shed through the fallopian tubes and deposited into the pelvis. This theory, however, does not explain the mechanism of endometriosis fully, since women with retrograde flow do not develop endometriosis. Some research suggests that a dysfunction of the immune system may be involved in endometriosis. Endometriosis is a benign disease. It can not be cured but it can be clearly diagnosed with tests, and there are treatments that can relieve the intensity of symptoms. Ignorance in the general and medical population is an additional battle that women who suffer with endometriosis must confront. The suspicion that the disease is psychosomatic is lessening, but slowly.

Who gets it? Effects about five million American women during their reproductive years.

5. Fibromyalgia (FM)

What is it? Fibromyalgia is a musculoskeletal condition that is sometimes referred to as fibrositis, myofibrositis, fibromyositis, and myofascial pain syndrome. It is characterized by the presence of diffuse and persistent pain and chronic fatigue. Sleep disturbance is another common symptom. Sleep disorders that affect people with fibromyalgia are myoclonus (spasms in legs and arms at night), alpha-delta sleep disruption (delta sleep disrupted by alpha waves), and nonrestorative sleep (waking after sleep with stiffness and soreness). Less common symptoms are frequent headaches, dry eyes, hair loss, sun sensitivity, and irritable bowel syndrome. Symptoms tend to fluctuate and do not necessarily occur simultaneously. They may appear slowly or attack suddenly. Although fibromyalgia may have been a condition plaguing mandkind forever, it has only recently been given serious attention by the medical and research communities. Research in the 1980’s and 1990’s proliferated and suggested a basis for diagnosis. Fibromyalgia may be identified when patient’s reports a history of pain over an extended period of time in eleven out of eighteen specific tender points. Tender points are zones of the body that when pressed are excruciating painful. For many people with fibromyalgia, sleep is not restful. The symptoms of fibromyalgia are so similar to those of chronic fatigue syndrome that some researchers believe that they “are different strains of the same disorder”. They do differ, however, in that “CFS patients have grater fatigue while FM patients have greater pain.” There are no cured for fibromyalgia, but some symptoms can be treated. The cause of fibromyalgia, as with all ICIs, is unknown. Some areas of possible causes that are being investigated are central nervous system abnormalities, viral triggers of FM such as human T-cell lymphotropic virus, head and neck trauma, bacterial infections, low level amino acids, metabolic disturbances, and traumatic events.

Who gets it? Primarily women suffer with fibromyalgia. It may be that more women then men are diagnosed with fibromyalgia because women, in general, tend to seek medical attention more often then men. There may be, however, a link between fibromyalgia and hormones, since there appears to be an increase in flare ups of symptoms before menstruation. This however, does not explain the symptoms in men and children.

6. Human Immunodeficiency Virus (HIV)

What is it? Human immunodeficiency virus is the most widely accepted cause of acquired immune deficiency syndrome (AIDS). When a person is infected with HIV, the potential for AIDS and AIDS related complex (ARC) is ever present. I am primarily focusing on the HIV stage of AIDS since that condition is characterized by the invisible chronic illness factors. First of all, it is not possible to detect from casual observation that a person has HIV. Someone with HIV generally appear healthy. People with HIV face the inevitable progression of the illness and development of AIDS, but the illness develops in different patterns and the nature and severity of the symptoms are different for each person. Symptoms that may occur in the early stages of infection include fever, fatigue, render and swollen lymph glands, and headaches. Often these symptoms temporarily recede. When the disease becomes more active, new symptoms occur, such as chronic diarrhea, chronic fatigue, weight loss, cognitive changes, skin disease, night sweats, lymphoma, and ear-nose-throat problems. HIV sufferers can experience years of exacerbations and remissions of these symptoms. Early recognition is vital for treatment and relief of symptoms and to assure longer survival. Opportunistic infections (infections that the healthy immune system routinely wards off) eventually weaken the immune system, allowing the onset of AIDS.

Who gets is? The early cases of diagnosed AIDS in the US were found in 1981 in LA and New York. During the early and middle 1980s AIDS was particularly found in the homosexual, Haitian, and hemophiliac population. Since that time, AIDS have been discovered in the heterosexual population, particularly among intravenous drug users and their sex partners. Men, women, and children are vulnerable to HIV infection. No race appears to be exempt.

7. Inflammatory Bowel Disease (IBD)

What it is. Included in the inflammatory bowel disease category are two disease, Crohn’s disease and ulcerative colitis, Crohn’s disease, also referred to as ileitis and regional enteritis, is an inflammatory disease that causes thickening of tissue in the small intestine and colon. The thickening can cause obstruction in these organs. Fistulae are formed when the inflammation spreads to the bladder and other parts of the bowel. Ulcerative colitis attacks the colon (the last section of the large intestine) and the rectum. Onset of colitis is marked by soft and loose stools (more so than usual) mixed with blood and a pressing sensation that signals an intense need to defecate. Symptoms common to inflammatory bowel disease are diarrhea, loss of appetite, weight loss, abdominal pain, and rectal bleeding. Severe cases of these two diseases can cause systemic symptoms; in other words, other systems of the body are affected, such as the liver, skin, joints, and eyes. Inflammatory bowel diseases are characterized by ICI conditions. Authors of The Crohn’s Disease and Ulcerative Colitis Fact Book, “The diseases are chronic and as yet their cause—is therefore their cure—are unknown. Some people have mild symptoms while others have severe and disabling ones.” In either case, symptoms exacerbate and remit. Treatment and surgery can alleviate the intensity of symptoms. Some causative agents being investigated are intestinal bacteria, virus, and dysfunction of the immune system, yet no single lab test identifies the disease.

Who gets it? 500,000 people in the US have been diagnosed with inflammatory bowel disease. Estimated that include people who suffer with the illness but have not been diagnosed may go as high as two million. Males and females are vulnerable to Crohn’s disease and colitis. Onset generally begins between the ages of twelve and the late twenties; a less frequent age onset is after the age of fifty. IBDs appear predominantly in developed countries.

8. Irritable Bowel Syndrome (IBS)

What is it? Irritable bowel syndrome (erroneously called spastic colon) is the common cold of the intestinal tract. Elaine Shimberg, author of Relief from IBS, estimates that twenty-two million Americans suffer with IBS. Common as it is, IBS makes people feel miserable. This syndrome is a functional disorder; in other words, tests can detect no evidence of pathology to explain the symptoms. Normally, the contents of the intestines are propelled by muscular contractions. In people who have IBS these contractions are irregular and uncoordinated, causing intestinal distress. Symptoms common to IBS are abdominal pain, constipation, diarrhea, alternating constipation and diarrhea, excessive gas, distension and bloating, appetite loss, headaches, and fatigue. Symptoms are aggravated by certain foods, alcohol, caffeine, and smoking. IBS does not lead to cancer or any other disease. Some symptoms can be relieved by changes in diet, eating habits, and medical treatment.

Who gets it? In the US, women are twice as likely as men to suffer with IBS. It occurs in young people, with more people identifying the symptoms of the syndrome before the age of thirty-five.

9. Lupus Erythematosus (LUPUS)

What is it? Lupus Erythematosus is an autoimmune disease that generally affects the skin, kidneys, joints, lungs, and blood. It may affect every system of the body. In lupus the immune system becomes hyperactive and produces excessive amounts of the blood proteins called antibodies. When functioning appropriately, these antibodies attack foreign invaders of the body, such as bacteria; during lupus flare ups, the antibodies attack healthy tissue and cells. Lupus can strike suddenly or appear gradually. Symptoms exacerbate and remit and in some cases may manifest themselves so slightly that they may not be noticed. Symptoms do not occur in a typical pattern, thus complicating diagnosis. One person with lupus may feel flu-like symptoms, while another may have kidney problems. There is not cure for lupus, though symptoms often respond to treatment. There are three kinds of lupus—discoid, systemic, and drug induced. Discoid lupus causes a pronounced rash of the face and scalp and severe hair loss and may leave scars on face and scalp. Typically, discoid lupus causes little internal disease; however, a small percentage (5 percent) of the people with discoid lupus may experience a systemic attack at some time in their lives. Systemic lupus involves not only the skin but also internal systems such as kidneys, blood, joints, tendons, and lungs. Symptoms such as sun sensitivity, sharp pains in lower parts of the chest, joint pain, fever, kidney inflammation, and anemia are common. The cause of lupus is presently unknown, but intensive research activity takes place worldwide. Some researchers are looking into the possibility that lupus is a viral disease; other causes being investigated are immune dysfunction, sun exposure, and infection.

Who gets it? Women develop lupus eight to ten times more often then men. The illness tends to attack women during their childbearing years. In some women the first symptoms and signs develop during pregnancy, in others they appear soon after delivery. While men and children contract lupus less frequently than women, they suffer similar symptoms. The Lupus Foundation estimates that there are 500,000 Americans who suffer with lupus.

10. Lyme Disease

What is it? Lyme disease is an inflammatory disorder that is transmitted by a tick borne spirochete. The disease gained recognition in the US in 1975, when an unusual number of cases were identified in Lyme, Connecticut- hence the name. Typically, a small red lesion identifies the presence of a tick bite. The symptoms become evident within three to thirty days after the bite’s occurrence. They include fatigue, headache, fever, and stiffness of neck. Less frequently occurring symptoms are backache, nausea, vomiting, sore throat, and swollen lymph glands. When the illness is not detected and treated early, it may trigger neurological problems, arthritis, and persistent muscle pain. Research indicated that Lyme disease may trigger the onset of fibromyalgia. Symptoms may relapse and remit, and they may linger for extended periods of time. Administration of antibiotics is effective treatment once the disease is identified.

Who gets it? Adults and children are susceptible to Lyme disease. Cases of the disease have been noted in almost every state as well as in Europe.

11. Migraine

What is it? Migraine is not, as several individuals told me, “just a headache”. The pain of migraine, a disorder of the cranial circulation, is caused by dilation of the scalp arteries. What causes the dilation is not known, but research suggests that it may be genetically transmitted. Recurrent attacks of intense pain can occur once a day or once a month. The pain may occur unilaterally (on one side of the head) or generally about the head. It often begins in the eye or in the area surrounding the eye. While intensity, type, and pattern of migraine vary from person to person, the symptoms include nausea, vomiting, sensitivity to light, and fatigue. Migraine is typically preceded by prodromal symptoms, which are sometimes called aura symptoms. These symptoms signal the onset of migraine and may include pain and needles in fingers, hands, and face, loss of appetite, irritability, restlessness, and depression. These symptoms abate after the migraine begins.

Who gets it? Migraine usually begins between the ages of ten and thirty. In some cases migraines go into remission after the age of fifty. Women are more likely then men to be afflicted with migraines; children are struck with the disorder less often then adults.

12. Multiple Sclerosis (MS)

What is it? Multiple Sclerosis is a disease of the central nervous system in which the nerve cells lose their covering of myelin, a fatty tissue that insulates the cells and facilitates the transmission of messages within the nervous system. Plaques form where the myelin has been destroyed. These plaques interfere with communication within the nervous system. The symptoms of MS are multifocal, transient, and recurrent. They include weakness of limbs, bladder urgency, loss of bowel and bladder control, numbness, tingling in limbs, parathesias (shock like symptoms), and chronic fatigue. When MS is suspected from clinical observation, CT scan and magnetic resonance imaging (MRI) can confirm the diagnosis. There is no cure, but some symptoms can be alleviated with treatment. The course of the disease is unpredictable and varies greatly with each individual. For 20 percent of the population of people with MS the illness is benign. Benign MS is characterized by one or two exacerbations of symptoms with complete recovery. The exacerbations of symptoms may be so mild as to go unnoticed. The majority of people with MS, 60-70 percent, have exacerbating-remitting multiple sclerosis. When an exacerbation of symptoms occurs, it can last for periods of days, weeks, moths, or years; then symptoms may remit unpredictably. Remissions, may last for extended periods of time, possibly for years. Progressive MS (my mom has this one) affects 10-20 percent of the MS population. This form of MS appears gradually but steadily progresses and cause incapacitation.

Who gets it? Men and women are affected by MS, though it is more common in women between the ages of twenty to fifty. Children under twelve are not susceptible to MS. Perhaps as diagnostic methods become more sophisticated and accurate; the diagnosis of MS may be determined at earlier ages then previously thought. It is typically found in people living in the northern hemisphere. 250,000 people have been diagnosed with MS in the US; the National Multiple Sclerosis Society suspects that there may be more cases of undiagnosed MS.

13. Post-Polio Syndrome (PPS)

What is it? PPS, also called post-polio sequelae and progressive post-polio muscular atrophy (PPMA), is regarded as the late effects of polio. In the 1940’s and 1950’s epidemics of this crippling viral disease caused widespread fear. Vast amounts of money went to support research in search of a cure. The result was the discovery and development of the Salk and Sabin vaccines, which virtually eliminated the disease. But in the 1980’s physicians and physical rehabilitation therapists, as well as past victims of polio, observed a consistent set of physical problems being experienced by past victims of polio. Initially, the medical community failed to pay attention to what the polio patients were beginning to call post-polio syndrome. Not until the survivors of polio organized associations such as the Polio Society and the International Polio Network was the syndrome fully acknowledged. The difference in attention that has been given to polio as opposed to that given to PPS dramatizes the predicament of ICI sufferers. When polio was an evident and widely recognized disease, research was financed and patients were treated with intense medical attention. As an invisible chronic illness, PPS is only beginning to be accepted as an authentic disorder and the victims given the treatment and medical advice they need to manage their symptoms. The symptoms include fatigue, new joint and muscle pain, decreased stamina, new difficulties in breathing, new muscle weakness, generalized pain, and sensitivity to cold. Not everyone experiences the same symptoms or the same severity of symptoms. According to the Polio Society, “the most widely accepted explanation (for PPS) is that nerve cells damaged by the polio virus decades earlier, as well as the neighboring nerve cells that took over for those killed by the virus, are now wearing out. “

Who gets it? 640,000 people contracted polio and of these it is estimated that half suffer today with post-polio syndrome.

14. Premenstrual Syndrome (PMS)

What is it? Premenstrual syndrome is probably the most maligned and dismissed disorder afflicting women. It is characterized by cyclicity, occurring eight to ten days before menstruation and disappearing immediately after menstrual flow begins. Physician and PMS expert Katharina Dalton indicates a specific set of criteria for diagnosis of PMS:
1. Symptoms must be present every month for at least the previous three months.
2. Symptoms must be present premenstrually and cannot start before ovulation.
3. There must be a complete absence of symptoms after menstruation for a minimum of seven days.

The symptoms of PMS are caused by fluctuations in estrogen and progesterone, which cause retention of fluids. Symptoms vary in intensity and nature, but the list includes fatigue, breast swelling and tenderness, weight gain, bloating, headaches, vertigo, abdominal cramps, acne, muscle aches, depression, and irritability. For most women symptoms do not tend to be disabling, but they are disturbing and persistent. For women who suffer with severe PMS the symptoms interfere with normal function and the disorder is agonizing.

Who gets is? Millions of women.

15. Thyroid Illness

What is it? Thyroid illnesses are caused by the overproduction of hormone (hyperthyroidism) or the underproduction of hormone (hypothyroidism). These conditions can affect different parts of the body; including the skin, heart, liver, and kidneys. When the thyroid produces too much hormone, primarily triiodothyronine (T3) and thyroxine (T4), symptoms such as dry skin, heart palpitations, weigh loss, eye complications, bowel dysfunction, and nervousness are triggered. The symptoms caused by an inadequate production of hormone are weight gain, hair loss, prematurely grey hair, fatigue, and constipation. Hyperthyroidism and Hypothyroidism can be detected through blood tests and familt history. Unfortunately, people afflicted with these illnesses are often misdiagnosed because such symptoms as fatigue, nervousness, and weight change are indicative of so many illnesses. These conditions can be treated and cured.

Who gets it? Thyroid illnesses are inherited conditions that are more likely to strike women then men. Hyperthyroidism typically occurs between ages of twenty and forty while hypothyroidism is more common after the age of fifty.

Sources: Monique Marie
Dr. paul Donoghue
Dr. Mary Siegal
Center for Disease Control
www.fatigueandfibro.com