If it's not CFS, then what is it?

Discussion in 'Fibromyalgia Main Forum' started by gcalex, Apr 12, 2003.

  1. gcalex

    gcalex New Member

    I have brutual fatigue, post-exertional malaise, and headaches, but I don't have the other symptoms or so-called markers of CFS: no cognitive impairment, no neurally mediated hypotension, no vestibular problems, no fevers, no rashes, no sweats, no "crimson crescents," no GI problems, no recurrent infections, no low blood pressure, no sore throats, no tender lymph nodes, etc. As a result, not even CFS docs think I have CFS, and they as well as (of course) internists just throw up their hands or dump me into the (of course) psychiatric camp. Anyone else been through this or have any thoughts? JIM
  2. layinglow

    layinglow New Member

    Jim----you didn't mention sleep? Do you awake refreshed?
    From the CDC the key diagnosis is (1) Fatigue, (2) The coexisting factors---can certainly be added as time progresses. These are ever evolving and changing disorders.

    Have you given thought to seeing a D.O. and perhaps trying B-12 Injections? Although taking oral B12 for a long period of time I was not absorbing it--taking the B12 injections at home, has really helped with the horrid fatigue, and post exertional fatigue and malaise. You might consider it.

    I have pasted an article below----please note what Dr. Conley and Dr. Teitelbaum two nationally respected CFS/FM Docs have to say about the CDC criteria for CFS, at the end of the article.

    How do you know if you have CFS?
    Diagnosis of CFS is complicated by the fact that fatigue is the single most commonly reported complaint but fatigue is a feature of countless other conditions as well. Because of this, a doctor's first goal is to rule out other illnesses.

    The Centers for Disease Control (CDC) has established certain criteria for diagnosing CFS:

    1. Fatigue that is persistent, relapsing or debilitating; does not improve with bed rest; and reduces or impairs average daily activity level by more than 50 percent for a period of at least 6 months. Patient has no previous history of fatigue.

    2. The patient has 4 or more of the following symptoms, which must have persisted or recurred during 6 or more consecutive months and predated the fatigue:

    Short-term memory or concentration problems

    Sore throat

    Multi-joint pain without joint swelling or redness

    Muscle pain

    Headaches of a new type, pattern or severity

    Non-refreshing sleep

    Post-exertional malaise lasting more than 24 hours

    In addition, a number of minor symptoms may also appear:

    Poor sleep


    Brain fog

    Increased thirst

    Bowel disorders

    Recurrent infections

    Exhausting after minimal exertion

    The CDC criteria should not be thought of as final guidelines in diagnosing CFS. Research has shown the people with disabling fatigue who fit the CFS criteria have the same immunologic changes and responses to treatment as those who don't fit the criteria.

    According to Edward J. Conley, D.O, author of America Exhausted, "At least 50 percent of the patients we see for CFS do not have symptoms severe enough to be classified as CFS, but that does not mean these people are healthy. They just don't fit a committee's definition for CFS."

    "My experience also suggests that the underlying causes and the response to treatment are not affected by whether patients strictly meet CDC guides," says Jacob Teitelbaum, M.D. "I prefer to use the term Severe Chronic Fatigue States (SCFS) for these conditions."