Chronic Fatigue Syndrome: An easy way to explain it to people~
Imagine waking up every day, feeling heavy, exhausted, and energy less.
Imagine that sleeping doesn't provide rest, you only seem to get worse.
Imagine never feeling refreshed or that you've had 'a good night's sleep'. Imagine days blurring into nights...
Imagine feeling as if you haven't got enough energy to even get dressed. Or how it feels when you see no one for days because you feel too exhausted and ill to go out of the house.
Imagine never being able to see your friends or being unable to hold down a full time job, or study.
Imagine having thumping headaches that just won't go away.
Imagine that you're talking to someone, but your brain's too exhausted to understand them. Or that you have to keep the simple act of reading a book or magazine, to a 'good day'. Imagine that this 'good day' comes one or twice a week if you're lucky.
Imagine that a short walk around the corner will put you in bed for days.
Or knowing that you'll get a cold and feel 'fluey' in a couple of days time (delayed onset of symptoms), just because you did the washing up, or popped out to get some bread.
That you have to plan a simple trip to the local post office, days in advance, in the hope that you might just have enough energy to make it that day.
Imagine how you feel when you don't....
Then imagine how it feels to know that most people think that it's all in your head.
xo
k@t
* CFS is marked by extreme fatigue that has lasted at least six months; is not the result of ongoing effort; is not substantially relieved by rest; and causes a substantial reduction in daily activities.
* In addition to fatigue, CFS includes eight characteristic symptoms:
o postexertional malaise (relapse of symptoms after physical or mental exertion);
o unrefreshing sleep;
o substantial impairment in memory/concentration;
o muscle pain;
o pain in multiple joints;
o headaches of a new type, pattern or severity;
o sore throat; and
o tender neck or armpit lymph nodes.
* Symptoms and their consequences can be severe. CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, congestive heart failure and similar chronic conditions. Symptom severity varies from patient to patient and may vary over time for an individual patient.
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'.. ".." in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.
Sleep disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.
Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck what doctors refer to as unrefreshing sleep it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea (as well as the newly discovered form of interrupted breathing called upper airway resistance syndrome, or UARS), bruxism (teeth grinding), periodic limb movement during sleep (jerking of arms and legs), and restless legs syndrome (difficulty sitting still in the evenings).
Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients. Acid reflux or gastroesophogeal reflux disease (GRED) also occurs with the same high frequency.
Chronic headaches - Recurrent migraine or tension-type headaches are seen in about 70% of FMS patients and can pose a major problem in coping for this patient group.
Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have a varying degree of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.
Other common symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur. Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.
Aggravating factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.
What is the problem?
The problem is: ..
I will try to convey to you what we mean by ".." Even a superficial understanding of this topic will change the way you think about the fibromyalgia problem. Furthermore, recent advances that have been made at the molecular level hold out the promise of more effective treatment for fibromyalgia pain.
POSSIBLE CAUSES
Causes:
t'..'t consciously control, such as heart rate, blood vessel contraction, sweating, salivary flow and intestinal movements. It’s thought that sympathetic nervous system dysfunction occurs in people with fibromyalgia, particularly at night, which leads to fatigue, stiffness, dizziness and other signs and symptoms associated with the condition.
* Changes in muscle metabolism. For example, deconditioning and decreased blood flow to muscles may contribute to decreased strength and fatigue. Differences in metabolism and abnormalities in the hormonal substance that influences the activity of nerves may play a role.
Psychological stress and hormonal changes also may be possible causes of fibromyalgia.
COMMON TREATMENTS
Traditional treatments are geared toward improving the quality of sleep and reducing pain, which means that a sleep study may aid with individualizing your therapy. Deep level (stage 4) sleep is crucial for many body functions (such as tissue repair, antibody production, and the regulation of various neurotransmitters, hormones and immune system chemicals). Therefore, the sleep disorders that frequently occur in FMS patients are treated first because they may be a strong contributing factor to the symptoms of this condition. Medications that boost your body'..'t simply "get over" FMS/CFS with the passage of time or wishful thinking. Fibromyalgia Network assists patients with a solution-oriented approach to handling difficult situations. Each issue features at least one "how-to" coping article on topics that many patients struggle with, such as:
More effective, guilt-free communications with family and friends about symptoms
Avoiding frustrations at the doctor's office, which may range from discussing symptoms to requesting specific therapies
Handling demands on limited time
Keeping up with job duties or household tasks without causing a flare-up
Striving for and maintaining a better quality of lifeone that makes you both happier and healthier
How to respond to hurtful comments from others
Self-care
Self-care is critical in the management of fibromyalgia.
* Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
* Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
* Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
* Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
* Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.
LINKS
Fibromyalgia Network
Medline Plus FMS
NFA
MayoClinic.com
American College of Rheumatology
American FMS Association Inc
Helpful links for Disability
FMS Support
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