Imagine that you go through the day carrying two extremely heavy suitcases and wearing ankle weights. You constantly feel tired, weak, exhausted, and heavy from the moment you wake up in the morning to the time you go to bed at night. This goes on for months or years on end. Imagine that no matter how little you do or how much sleep and rest you get, you still feel terribly exhausted. These are the hallmark symptoms of Chronic Fatigue Syndrome (CFS) otherwise known as Myalgic Encephalomyelitis.
How is CFS diagnosed?
CFS is diagnosed by excluding other illnesses and disorders that cause similar symptoms such as thyroid disorders, diabetes, and infections. You should consult with your family physician if you have symptoms of CFS and have not had them investigated to rule out some other disorder or illness.
The diagnostic criteria for CFS are:
(1) Chronic fatigue that is not due to an identified illness or disorder and is not the result of physical activity; is usually worse after exercise; is not reduced by rest; and significantly interferes with the person’s day-to-day life
(2) Fatigue after activity involving an excessive loss of energy and capacity to concentrate and think effectively. These symptoms usually occur for 24 hours or longer.
(3) Non-restorative sleep. Sleep disturbances may occur. Even when sleep is regular and sustained, there is fatigue and low energy upon wakening.
(4) Chronic pain involving muscles or joints which may be widespread and may include headaches.
(5) Two or more of the following:
(i) problems with memory or concentration
(ii) confusion
(iii) disorientation
(iv) difficulty learning new information, sorting items into categories, word finding, sensory-perceptual problems
(v) muscular twitches (fasciculations) or muscle weakness
(6) At least one autonomic, one neuroendocrinological, and one immune system symptom:
(i) Autonomic symptoms such as:
(a) A drop of 20 to 25 mm Hg in systolic blood pressure when standing (neurally mediated hypotension)
(b) A rapid increase in heart rate of more than 30 beats per minute upon standing or to more than 120 beats per minute in total during the first 10 minutes of standing (postural orthostatic tachycardia)
(c) A drop in blood pressure that occurs many minutes after standing (delayed postural hypotension)
(d) Light headedness
(e) Extreme paleness
(f) Nausea or Irritable Bowel Syndrome
(g) An increase in the frequency of urination or bladder dysfunction
(h) Palpitations
(i) Shortness of breath with activity
(ii) Neuroendocrinological Symptoms such as:
(a) Below normal body temperature with significant changes in body temperature over the course of the day
(b) Episodes of sweating
(c) Episodes of feeling feverish and having cold extremities
(d) Significant difficulty tolerating heat and cold
(e) Significant weight change and changes in appetite
(f) Any of these symptoms worsening with stress
(g) Loss of ability to adapt to changes in day-to-day life
(iii) Immune System Symptoms such as:
(a) Painful lymph nodes
(b) Recurrent sore throat
(c) Recurrent flu-like episodes
(d) Feeling generally unwell
(e) Developing new sensitivities to food, chemicals, or medications
The various symptoms that people with CFS experience along with their chronic exhaustion often change over time. They may not experience the same symptoms from day to day. Some people with CFS also experience increased sensitivity to light, noise, or smells. Some people with CFS also have fibromyalgia.
What causes Chronic Fatigue Syndrome?
CFS is understood to be a disorder that affects the person’s neurological, endocrinological, and immune system but there is no clear cause. Recent research has suggested that there may be a genetic factor. There is also evidence that some people with CFS have suffered from a virus which resulted in a change in their immune system. After they experience some type of stressful experience such as an emotional or physical trauma, a change in their hormones, or another infection, they go on to develop CFS because their immune system has been compromised. This is not the case for everyone.
CFS is Real
The diagnosis of CFS is still controversial among many health care professionals. There are still some who question whether CFS is a real syndrome. If you are suffering from CFS, the reality of your symptoms and the impact they have on your life are not in question.
Many people with CFS have had multiple medical tests and investigations before they receive the diagnosis. Even then, many are told that their symptoms are “all in their heads” and somehow not real. Although we do not yet know the neurological and chemical factors that give rise to CFS, there is no question that the syndrome and its symptoms are real. As with all our experiences, the symptoms reflect a complex interplay of mind and body because the brain influences, and is influenced by everything that happens in the rest of the body.
It is common for people who experience CFS to become depressed. They may also experience anxiety and frustration because their day-to-day activities are disrupted by their symptoms. They may become extremely tired after doing very little which significantly limits their activity level.
Friends, family, and co-workers may not understand especially since there are no outward signs. Their reactions may increase the person’s distress about their symptoms.
How is CFS Treated?
Psychological treatment can significantly help people with CFS take control of their lives. By coping more effectively, people with CFS can actually reduce the intensity and frequency of their symptoms. Their reactions to symptoms often aggravate them. People with CFS usually resent the limits that their symptoms impose and react by trying to continue with their usual day-to-day routine. This often aggravates their symptoms and their distress. When they feel that they must stop or cancel their plans, they typically feel more angry, sad and anxious. These emotions cause changes in the brain and the rest of the body which in turn aggravate their symptoms. Many people are inadvertently caught in a cycle of intensifying the symptoms they want to reduce. Psychological treatment can help people change their coping strategies and reactions so that they reduce their symptoms and the limits they impose on their day-to-day life.
Some people also benefit from changing their diet and exercise regimen and by taking medication. Medications may include anti-inflammatory drugs, antidepressants or antihistamines. Everyone is different. Your goal is to find the strategies and treatments that work for you. There are always things you can do to help yourself feel better and improve the quality of your life despite CFS.
For further information:
1. Chronic Fatigue Syndrome – Centers for Disease Control and Prevention: www.cdc.gov/cfs
2. National ME/FM Action Network: www.mefmaction.net
3. Chronic Fatigue Syndrome Association of America: www.cfids.org/cfs
4. IACFS/ME: www.IACFS.net
5. Chronic Fatigue Syndrome – MedlinePlus: www.nlm.nih.gov/medlineplus/chronicfatiguesyndrome.html
6. Chronic Fatigue Syndrome – Mayo Clinic: www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395
