Although its name trivializes the illness as little more than mere tiredness, chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS), brings with it a constellation of debilitating symptoms.
Chronic Fatigue Syndrome is characterized by incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina) and problems with concentration and short-term memory. It is also accompanied by flu-like symptoms such as pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat and headache. A distinctive characteristic of the illness is post-exertional malaise, a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period.
The symptoms of Chronic Fatigue Syndrome are highly variable and fluctuate in severity, complicating treatment and the ill person’s ability to cope with the illness. Most symptoms are invisible, which makes it difficult for others to understand the vast array of debilitating symptoms with which people with the illness must contend.
Other Common Chronic Fatigue Symptoms
Additional symptoms are reported by people with Chronic Fatigue Syndrome such as word-finding difficulties, inability to comprehend/retain what is read, inability to calculate numbers and impairment of speech and/or reasoning. PWCs may also have visual disturbances (blurring, sensitivity to light, eye pain, need for frequent prescription changes); psychological problems (depression, irritability, anxiety, panic attacks, personality changes, mood swings); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and/or cold; alcohol intolerance; irregular heartbeat; irritable bowel (abdominal pain, diarrhea, constipation, intestinal gas); low-grade fever or low body temperature; numbness, tingling and/or burning sensations in the face or extremities; dryness of the mouth and eyes (sicca syndrome); gynecological problems including PMS and endometriosis; chest pains; rashes; ringing in the ears (tinnitus); allergies and sensitivities to noise/sound, odors, chemicals and medications; weight changes without changes in diet; light-headedness; mental fogginess; fainting; muscle twitching; and seizures.
Diagnosis of Chronic Fatigue Syndrome) , is a time-consuming and difficult process which is generally arrived at by excluding other illnesses with similar symptoms and comparing a patient's symptoms with the 1994 International case definition. As yet, there is no indicator or diagnostic test that can clearly identify the disorder. Overlapping symptoms can occur with several conditions, such as fibromyalgia, Gulf War Illnesses and multiple chemical sensitivities. Many diseases have similiar symptoms including lupus, hypothyroidism and Lyme disease and these need to be considered when making a diagnosis.
What You Can Expect
Your physician will take a medical history, asking questions about your past health (you will probably be asked to complete a written form - often done before your appointment time). It is likely that you will be asked about your past and current mental health as well. You can expect to receive a basic physical exam. Several types of routine blood tests and those that exclude alternative diagnoses are almost certain to be ordered. Other tests that are designed to identify central nervous system problems or viral syndromes may be ordered as well, depending on your symptoms. It's important to answer questions honestly and completely - and don't hesitate to ask your own questions. If you have thought of questions before your appointment, it's a good idea to write these down and bring them with you. Also, bring a list of medications and supplements that you're taking - be sure to include dosages. In addition, bring paper and pen with you to write down instructions. If cognitive problems interfere with the ability to write instructions or understand them, ask a friend or family member to accompany you.
Treating Chronic Fatigue Syndrome presents a significant challenge for people with CFS and their physicians. As yet, there is no known cause, cure or universal treatment for CFIDS. Until a treatment is developed which will improve all the symptoms of CFIDS, or correct the underlying cause, therapy is based upon the individual's presenting symptoms.
Medical Chronic Fatigue Syndrome Treatments
Medications that provide symptom relief are frequently the first line of treatment chosen by primary care providers for the person with CFS. These include medications for pain; sleep disturbances; digestive problems such as nausea; flu-like symptoms and, if present, depression and anxiety. Medications may be supplemented by supportive therapies.
Supportive Chronic Fatigue Syndrome Treatments
Therapies that help people to relax and improve coping skills fall into this category and may include counseling for emotional and mental health, cognitive behavioral therapy, sleep management therapy and massage.
Many persons find complementary therapies such as acupuncture, tai chi and alternative food,herbal and dietary supplements to be helpful. Please note that adding food and herbal supplements to your therapy regimen needs to be done with care and with your physician's and pharmacist's knowledge to prevent undesirable side effects.
Lifestyle Alterations
Altered digestion, food intolerances, decreased energy, fatigue, cognitive problems and sleeplessness create the need for revisions in daily living routines. These can include changes in diet; exercise modifications; alterations in activities of daily living according to one's energy level; and sleep/rest management. All may require the assistance of professional clinicians, such as a dietitian, physical and/or occupational therapist, mental health professional and sleep therapist.
Local support groups may provide help in learning to cope with the many life changes that can occur due to Chronic Fatigue Syndrome. The CFIDS Association maintains state-by-state listings of Chronic Fatigue Syndrome support groups. To receive a list of support groups and contacts in your state, e-mail your name and complete mailing address to SupportGroups@cfids.org or send a self-addressed, stamped envelope to the CFIDS Association of America, Attn: Support Group Info, PO Box 220398, Charlotte, NC 28222-0398.
Will exercise, bed rest, or diet changes help?
A. There are treatments that can help ease symptoms. These include various medications that are given to help with specific symptoms, such as sleep disturbances or pain; and alternative/complementary therapies such as massage, yoga or Tai Chi and natural dietary supplements found to be helpfull.
Should people with Chronic fatigue Immune dysfunction donate blood?
Donating blood may not be safe for persons with CFIDS (PWCs), as research has shown that many PWCs have low blood volume and other vascular problems, and removing additional blood could provoke a relapse. Additionally, CFIDS patients should refrain from donating blood, bone marrow or organs, as it is currently unknown whether or not the illness may be contracted in this manner.
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