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Establish The Diagnosis
It is extremely important to determine what is the cause of your symptoms. The symptoms CFS/ME overlap many other illnesses. It would be appalling to spend months treating for CFS/ME if the symptoms were actually due to another treatable condition.
If you are not sure if you have CFS/ME, first ask yourself these questions:
q Have I had reduced energy, a lack of stamina, or a feeling of heaviness or malaise for at least 6 months?
q Has my fatigue been severe enough to force major changes in my lifestyle and work or school? (For example, have you had to drop outside activities, or get help at home, or cut back hours at work or school?)
q Does this fatigue occur with normal every day activities, and reduce my ability to perform by 50% or more?
q Can I be sure that this fatigue is not due to overwork or over-exercise?
If you can answer ALL the above questions with a “yes” then are you aware of having any ongoing medical problems that would cause such fatigue?
Such medical problems might include uncontrolled diabetes or thyroidism, emphysema, heart conditions, Lyme disease, multiple sclerosis, lupus, arthritis, inflammatory bowels disorders like ulcerative colitis or Crohn’s Disease, untreated sleep apnea or narcolepsy, problems with drug abuse or an eating disorder, and severe anxiety or depression.
If you have any ongoing medical problems that could cause severe fatigue, these must be addressed and treated first before you can be sure of having CFS/ME.
If you have chronic debilitating fatigue and are not aware of any medical conditions that could cause this, how many of the following symptoms do you have frequently, and only since the onset of your fatigue?
q Postexertional malaise
Relapse of symptoms for days after usual normal physical or mental exertion
q Unrefreshing sleep
Whether you sleep 4 hours or 14 hours you awaken feeling as bad or worse as when you went to bed.
q Substantial impairment in cognition or thinking
q Pain in muscles
q Pain in multiple joints
q Sore throat
q Tenderness in the lymph nodes
It is important to understand four things about this case definition:
First, this is not just a check list, otherwise all of us could check off that we have had sleep problems, muscle and joint aches, headaches, sore throat and tender glands in our experience. These symptoms must have started after the onset of your illness, and be frequent or severe (that is, debilitating).
Secondly, the diagnosis of CFS/ME is suspect unless you have all four cardinal symptoms of pain, cognitive difficulties, debilitating fatigue, and non-restorative sleep.
Next, “pain” includes muscle aching (most common), joint discomfort, and new headaches (more typical in men).
Lastly, the above definition is based on the 1994 international case definition, which is promulgated by the Centers for Disease Control (USA) and used worldwide. It is fairly restrictive because it was designed for research use. A more descriptive case definition was published by a Canadian consensus panel and can be found at www.cfids-cab.org/MESA/ccpc.html .
There are very few physicians who specialize in CFS/ME, so it is unlikely that you will find one who practices near you. It is much more important to find a physician who is open-minded, empathetic, willing to work with you and assist with these recommendations.
While you might be tempted to expound your entire “story,” recognize that primary care providers such as family doctors and internists have limited time for each patient. Provide supportive information to your doctor of choice, and set up 3 or 4 limited appointments -- perhaps 1-2 weeks apart -- to establish rapport and confirm your diagnosis.
One way to provide supportive information and a framework for diagnosis is to print out the three suggested office visits that we provide elsewhere in this CFS/ME treatment website, The Quick Start Guide for Practitioners: http://www.cfstreatment.info/quick_start_guide_for_practition.htm
There is no laboratory test for CFS/ME, but basic laboratory studies can help exclude other conditions that might be causing your symptoms. The basic panel that we recommend obtaining is:
It is also recommended to obtain some indication of “system function” by obtaining the following blood tests:
This latter group of tests may exceed the expertise of your primary care provider, and abnormalities may require review by an endocrinologist. If your endocrinologist is not aware of CFS/ME or the Hypothalamic-Pituitary Axis Suppression that occurs in this illness, print out the explanatory section found elsewhere in this website: Neuro-Endocrine Abnormalities in CFS & FM.
Nothing substitutes for an extensive history and physical examination, which you can arrange with your doctor for the expressed purpose of ruling out other medical conditions that could cause your symptoms.
Go on to MANAGING YOUR SYMPTOMS