Get A Diagnosis


 

 

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

Classical symptoms are:    trouble concentrating or reading; poor comprehension; difficulty recalling names, numbers, recent events, or conversations; frequently loosing the train of thought; making foolish errors (e.g., putting milk in the closet, leaving the stove on); more difficulty with simple math like adding and subtracting in your head, making change, keeping the checkbook); temporary disorientation even in familiar places.

q       Pain in muscles

This may be flu-like aching or tenderness of the skin, but also includes deep bone pain and toothache like pain

q       Pain in multiple joints

Joint pain is more of a stiffness or soreness than true pain, and there is no significant swelling, heat, or redness around joints. The joint pain tends to move around from joint to joint, although several joints can be involved at one time.

q       Headaches

Headaches are typically pressure-like and occur in the forehead, suboccipital area (neck), or behind the eyes.  However, almost any type of persistent or recurrent headache qualifies as long as it is of a new type, pattern, or severity since the onset of the illness.

q       Sore throat

This may be a vague achiness or scratchiness, or it may be a deep sore throat, but sore throats must have started after the onset of illness and occur frequently (say daily or a couple times per week).

q       Tenderness in the lymph nodes

Glands may or may not be swollen, but there is new and frequent tenderness under the jaw, in the neck, under the arms and possibly elsewhere. 

 

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

 

Find A Doctor

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  

 

Exclude Other Possible Causes For Your Symptoms

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:

Complete Blood Count (CBC)

Checks white cells, platelets, and hemoglobin or red cell count.

Comprehensive Metabolic Panel

Checks blood sugar, blood minerals, kidney function, liver function, and other parameters.

Thyroid function tests (TSH, Free T4, T3)

Checks thyroid function.  TSH is not reliable in CFS/ME, so it is imperative to obtain some measure of the specific thyroid hormones, T3 and T4.

Sedimentation Rate

A general test of well-being. Tends to run low ( <10 mm/hour) in CFS/ME. High levels (> 30) suggest an inflammatory or more serious condition.

Urinalysis

Checks for infection, kidney disease, and diabetes.

 

It is also recommended to obtain some indication of “system function” by obtaining the following blood tests:

Estrogen (E2)

Measures the essential female hormone. 

Testosterone

Measures the essential male hormone, but low levels of testosterone may affect libido in women.

Follicular Stimulating Hormone (FSH)

Measures hypothalamic-pituitary function in both men and women.

Prolactin

Another measure of hypothalamic-pituitary function. High levels may signal a pituitary tumor.

DHEA-sulfated

This is the most abundant hormone in the body, and it reflects both adrenal and hypothalamic-pituitary function.  

Insulin Growth Factor (IGF1)

Reflects another aspect of hypothalamic-pituitary function.

Serum B12 and folate

Serum levels are usually normal in CFS/ME, but intracellular metabolism of B12 is frequently abnormal and may respond to high doses.

25-hydroxy Vitamin D, total 

Usually low in persons with CFS/ME. If less than 40, supplement with 1000 units of Vitamin D daily.

 

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