Chronic Fatigue Syndrome–Diagnosis and Prognosis

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How Is It Diagnosed?

According to the CDC (Centers for Disease Control) as of 2013, more than 1 million people in the United States have chronic fatigue syndrome, 0.35% of the population at that time. An obvious question is, for a disorder that occurs only 12% as often as fibromyalgia, what possible ways to diagnose it could there be? In short, none. There are currently no diagnostic tests that can confirm the presence of CFS in a patient. Nevertheless, there are criteria based on the commonly observed symptoms. A doctor must perform blood and urine tests that can exclude or confirm other illnesses as the cause and still weigh your range of symptoms against the other difficultly (yes, that is a word!) diagnosed conditions like fibromyalgia in case you have one of those instead. He or she should also rule out mental disorders, existing or previously experienced illnesses, and medication side effects.

The CDC and most doctors currently use a case definition produced by a group of CFS experts in 1994 to diagnose the condition:

  • “The individual has severe chronic fatigue for 6 or more consecutive months that is not due to ongoing exertion or other medical conditions associated with fatigue (these other conditions need to be ruled out by a doctor after diagnostic tests have been conducted)
  • The fatigue significantly interferes with daily activities and work
  • The individual concurrently has four or more of the following symptoms:
    • post-exertion malaise lasting more than 24 hours
    • unrefreshing sleep
    • significant impairment of short-term memory or concentration
    • muscle pain
    • pain in the joints without swelling or redness
    • headaches of a new type, pattern, or severity
    • tender lymph nodes in the neck or armpit
    • a sore throat that is frequent or recurring

These symptoms persisted or recurred during 6 or more consecutive months of illness and they cannot have first appeared before the fatigue.” (http://www.cdc.gov/cfs/case-definition/index.html)

Any other common symptoms associated with CFS should not be used in its diagnosis, though they likely confirm its presence afterwards.

What’s the Prognosis?

As with fibromyalgia, there is no cure, but unlike FMS, neither are there any FDA-approved medications to treat it as a specific disorder. The frequent changes that occur in the nature of a patient’s CFS and cycles of remission and relapse also make it a difficult disorder to treat. But, as with any incurable illness, the symptoms can be managed with some success, depending on the patient and the severity and variability of his or her symptoms.

Medications can be prescribed to treat sleep problems and lack of energy, pain, depression, and gastrointestinal problems while regulating sleep patterns, managing and reducing stress, physical therapy and exercise, and therapy for emotional problems can also help. CFS sufferers have also found that alternative therapies such as massage therapy, acupuncture, hydrotherapy, and yoga seem to help relieve symptoms as well. All in all, there is not much difference in treatment between chronic fatigue syndrome and fibromyalgia syndrome.

 

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Chronic Fatigue Syndrome–How It Feels

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So we’ve learned about the symptoms of chronic fatigue syndrome. But how do these symptoms feel to those affected by them? How are they experienced? This post will attempt to convey the nature of some the symptoms of CFS in more descriptive language, hopefully giving non-sufferers a better sense of what CFS victims endure.

Fatigue–the dictionary definition of fatigue is “weariness from bodily or mental exertion (noun)” and “to exhaust the strength of (verb)”; the definition of exhaustion is “extreme weakness or fatigue; the total consumption of something (in this case, your physical, mental, and emotional energies) (noun)”. Can you imagine having all of your energy just gone, no reserves? Most healthy people only come close to this after an unusually stressful day or a day full of more physical activity or exertion than they’re used to. And yet, CFS is worse. The fatigue is extreme, severe, bone-deep, and intense. It is often without cause and is not improved with rest or sleep. It is like a heavy and relentless weight holding you down (physical) or a thick fog permeating your body and senses, muffling everything (mental; emotional). Such fatigue makes even the most basic daily activities, such as personal hygiene or eating, a challenge.

Post-Exertional Malaise (PEM)–the dictionary definition of malaise is ” a condition of general bodily weakness; a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort”, and lethargy is “the quality or state of being listless and unenergetic, dull, sluggish”; we all experience the tiredness that comes after exerting ourselves, but PEM causes you to continue feeling tired and lethargic for longer than you should, based on whatever activity it was that you did, and to even feel increasing exhaustion even though the activity has been stopped; this experience lasts for at least 24 hours after the activity; you just can’t shake the exhaustion; it sticks to you and settles in rather than dissipating as it should
Pain–the muscle and joint pain as well as headaches experienced by CFS sufferers are very similar to that endured by FMS patients, though on a lesser scale than with FMS while still more than the average person; for more on how such pain feels, see the description of FMS pain in the post “Fibromyalgia Syndrome–How It Feels”; for CFS, joint pain seems to be most prominent
Unrefreshing Sleep and Sleep Difficulties–this aspect is fairly straightforward to describe; unrefreshing sleep is when you still feel as tired after sleeping as you did before going to sleep; you do not feel rested or refreshed and it’s as if you didn’t sleep at all; other sleep problems CFS sufferers encounter are difficulty falling asleep and/or staying asleep and inordinate sleepiness during the day
Cognitive Difficulties (Brain Fog)–the short-term memory, concentration, and complex thinking problems that CFS patients deal with is just like the brain fog (fibro fog) felt by those with FMS, though sometimes more severe in the case of CFS; for a description of brain fog, see the post “Fibromyalgia Syndrome–How It Feels”
Flu-like Symptoms–if you’ve had the flu, than you know what this feels like; I’ve never had the flu, but I know its usual symptoms and any, or even all, of them can afflict a person with CFS; these include achy joints and muscles, fatigue, sore throat, runny nose, headaches, chills, and fever; all of these might occur, yet no flu virus will be found in your body; I find this to be a very odd and unusual symptom (if there is such a thing for sufferers of chronic and uncommon illnesses) and if not for this symptom, I would be convinced that I have CFS rather than FMS, but who knows…
I hope that this post helps healthy persons to better grasp the challenges faced by those with CFS and understand the tangible and real effect it has on a person’s life and abilities. I also hope that those who suffer from chronic fatigue are helped to fight the self-deprecating feelings of uselessness and inadequacy that this symptom often causes.
If you are a chronic fatigue syndrome sufferer, please feel free to share your experiences with and thoughts on the disorder below!

Chronic Fatigue Syndrome–Definition and Symptoms

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What Is It?

Chronic fatigue syndrome (CFS)–aka chronic fatigue and immune dysfunction syndrome (CFIDS) aka myalgic encephalomyelitis (ME)–is an illness characterized by intense, deep, and persistent fatigue and exhaustion. Definite immune system abnormalities have been found in the majority of CFS patients, hence the alternate names (“myalgic” = of or relating to myalgia, which is muscle pain; “encephalomyelitis = inflammation of the brain and spinal cord, usually due to viral infection).

About 1 million, less than 1%, of Americans have CFS, and among them, more women are affected than men. The cause is unknown–though current thoughts trend toward infection, immune disorder, or neurological disorder–and there is no cure. CFS produces some similar symptoms to fibromyalgia syndrome (FMS) and the two often occur together, but there are differences.

What Are the Symptoms?

A syndrome is a set of symptoms that occur together, indicating the existence of a particular disease. Therefore, chronic fatigue syndrome most commonly presents the following set of symptoms:

  • as stated above, overwhelming, persistent fatigue
  • post-exertional malaise–disproportionate exhaustion lasting at least a day after mental or physical exercise
  • pain–muscle pain; joint pain without swelling or redness; headaches
  • unrefreshing sleep; sleep difficulties
  • impaired memory and concentration; brain fog, cognitive difficulties
  • frequent or recurring sore throats
  • tender and/or enlarged lymph nodes in the neck and armpits
  • other flu-like symptoms

Additional symptoms (and disorders) that often occur along with these are:

  • gastrointestinal problems
  • allergies and sensitivities to foods, odors, chemicals, medications
  • depression, mood swings, irritability
  • visual disturbances (blurry sight, light sensitivity, eye pain)
  • dizziness, balance problems, fainting; difficulty maintaining an upright posture
  • chills, night sweats
  • gynecological problems, including PMS
  • chronic inflammation of the bladder wall (interstitial cystitis), chronic pelvic pain
  • temporomandibular joint disorder (TMJ)

I think what really sets CFS apart from FMS are the flu-like symptoms that often precipitate and accompany the illness. If not for a lack of these flu-like symptoms, I would believe that I have chronic fatigue syndrome rather than fibro. But who knows. I could even have both, which is called comorbidity–the simultaneous presence of 2 (or more) chronic medical conditions in 1 person. Many fibro and CFS sufferers can attest to having comorbidity.

Are you a CFS sufferer? Do you experience comorbidity? How do you cope?