Before Diagnosis

Suppose you have been sick with an ongoing flu-like illness that has lasted weeks or months. The sickness and fatigue are overwhelming. Then you feel a bit better after many days in bed, only to get sicker within a short period of time when you try to function.

The fatigue you experience is also quite unusual. Especially unusual is the fact you feel more prostrated the day after you do something rather than the day you do it. (It's the "run over by a Mack truck" or having been "beaten up" feeling.) You have to go to bed for at least a day and virtually not move in order to sort of recover. Unless you have had mononucleosis, or some other type of extremely fatiguing similar illness, you have never experienced anything like this — nor for as long. What happens next?

If the physician you see knows you, s/he may know there is a new and different illness present, but may not really know what it is. The doctor does some lab tests, but says the tests are more or less normal. A couple of specialists may be consulted, who again aren't offering anything definite—or they may concentrate on one or two symptoms without assessing the overall picture. It is common for patients like you to see many doctors over months or occasionally up to a few years, before getting a definite diagnosis.

At the time of this writing, while much has been learned about CFS/CFIDS/ME and how to identify this illness, there is no definitive biological marker.

Why an Accurate Diagnosis is Important

• To be sick and not know what the problem is makes it impossible to know what is happening. It is like being lost without a map.
• By identifying the illness, the patient will know what treatments are available and how to obtain help in coping with CFS/CFIDS/ME or FM.

Symptoms

The most immediate and ongoing experience with the Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy/Myalgic Encephalomyelitis (CFS/CFIDS/ME) and Fibromyalgia (FM) are their symptoms. Unlike many other illnesses, both have many different symptoms that may change from day to day, week to week, and month to month. Although FM is diagnosed solely on the presences of pain criteria, it shares many of the same symptoms of CFS/CFIDS/ME in various patients. Identification of an ongoing and coherent pattern and clustering of symptoms is one element in making a diagnosis. As a patient, it is very helpful to see and understand that the number and types and symptoms that you have are, in fact, common to other patients with CFS/CFIDS/ME and FM.

Here is an extensive list of CFS/CFIDS/ME symptoms (many of which also frequently occur in FM patients) which has been drawn up by several international experts on the illness.

Most Common CFS/CFIDS/ME Symptoms

• Exhaustion, made worse by physical exercise (100%)
• Low-grade fever in early stages (60-95%)
• Recurrent flu-like illness (75%)
• Frequent pharyngitis (sore throats) (50-75%)
• Joint and muscle pain (65%)
• Severe muscle weakness (40-70%)
• Stiffness (50-60%)
• Post-exertional fatigue & flu-like symptoms (50-60%)
• Multiple sensitivities to medicines, foods, and chemicals (40-60%)
• Severe nasal & other allergies (often with worsening of previous mild allergies) (40-60%)
• Frequently recurring, difficult to treat respiratory infections (40-60%)
• Dyspnea (labored breathing or hunger for air) on exertion
• Painful lymph nodes (especially in the neck and under arms) (30-40%)

Neurological Symptoms

• Sleep disorders & unrefreshing sleep (50-90%)
• Headaches (35-85%)
• Visual blurring (50-60%)
• Intolerance of bright lights
• Parasthesias (numbness or tingling feelings) (30-50%)
• Dizziness/ Lightheadedness (30-50%)
• Ringing in the ears
• Impaired cognition (50-85%), which may include:
  
  • Attentional difficulties
  • Calculation difficulties
  • Memory disturbance
  • Spatial disorientation
  • Saying the wrong word

Other Symptoms

• Worsening of premenstrual symptoms (70% of women)
• Nocturia (excessive urination during the night) (50-60%)
• Tachycardia (abnormal rapid heart action) (40-50%)
• Chest pain (25-40%)
• Cough (30-40%)
• Weight gain (50-70%)
• Nausea, especially in earlier stages (50-60%)
• Diarrhea, intestinal gas or irritable bowel (50%)
• Intolerance of alcohol
• Night sweats (30-50%)
• Dry eyes (30-40%)
• Dry mouth (30-40%)
• Rash (30-40%)
• Frequent canker sores (30-40%)
• Herpes simplex or shingles (20%)
• Symptoms worsened by extremes in temperature

(Statistics compiled from data on CFS patients by: Paul Cheney MD, Anthony Komaroff MD, Charles Lapp MD, Daniel Peterson MD)