Chronic Fatigue Syndrome: Getting Properly Diagnosed

by Stephanie Brail

One of the most frustrating aspects of chronic fatigue syndrome (CFS) or fibromyalgia is getting a firm diagnosis. While the outlook is better for patients these days, for many years complaints and symptoms were dismissed by some doctors as psychosomatic or female hysteria, and that still happens today. This is because many doctors are still uninformed about these illnesses. And, since the majority of sufferers of both illnesses are women, some patient advocates have speculated that female patients aren't taken as seriously by their doctors.

Even today, the National Fibromyalgia Association claims that the average time it takes to get an accurate diagnosis of fibromyalgia is five years. During that time, the patient may have gone from doctor to doctor, to have taken expensive test after expensive test. The cost, financially, emotionally, and physically, can be astronomical. This is why it is important to take control of the diagnostic process and rely on personal initiative from the get-go.

Getting a solid diagnosis as quickly as possible is very important, because it is only through an official diagnosis and a doctor's recommendation that you will be able to go on disability if needed.

Diagnostic Criteria

The CDC has developed general guidelines for a CFS diagnosis. The two following criteria must be met:

1. Unexplained, persistent fatigue that's not due to ongoing exertion, isn't substantially relieved by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.

2. Four or more of the following symptoms are present for six months or more:
* Impaired memory or concentration
* Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
* Unrefreshing sleep
* Muscle pain
* Multijoint pain without swelling or redness
* Headaches of a new type or severity
* Sore throat that's frequent or recurring
* Tender cervical or axillary lymph nodes

Fibromyalgia diagnosis requires:

Persistent pain in all four quadrants of the body for at least three months.

Soreness or tenderness in 11 of 18 defined "tender spots" on the body.

Note: Some doctors will still diagnose CFS or fibromyalgia even if the criteria aren't strictly met. The criteria are meant as guidelines.

Problems With Diagnosis

The key problem with diagnosis is that there is no definitive blood test for CFS or fibromyalgia. Therefore, both illnesses rely on "exclusion" as a means of determining the diagnosis. The doctor will need to make sure that you don't have another illness with similar symptoms, such as lyme disease or thyroid disease. This requires testing to be done. Unfortunately, while the tests are all coming back as "negative" for other conditions, the wrong doctor might assume that the illness is "all in your head" and try to refer you to a psychiatrist. Worse, some doctors are so busy that they don't really take the time to fully interview patients and might dismiss your complaints with a quick prescription for an antibiotic. If this is the case, stand firm and try to find another doctor who has more experience with CFS and fibromyalgia.

How to Improve the Odds of a Quick and Accurate Diagnosis

Since both CFS and fibromyalgia are possibly two sides of the same diseased coin, a patient could be diagnosed with one or both. In fact, the specific diagnosis of CFS or fibromyalgia may be determined in part by which type of doctor you see first for your diagnosis. For example, if you go to a doctor specializing in rheumatism for your pain symptoms, you may be diagnosed with fibromyalgia. If you go to a different doctor who specializes in CFS, you may be diagnosed with chronic fatigue syndrome.

To improve the odds:

First, keep a careful log of your symptoms. Note that CFS requires a six-month history of symptoms, and fibromyalgia requires three months.

Determine whether your symptoms lean more towards fibromyalgia (chronic pain) or CFS (chronic fatigue).

Next, try to find a doctor in your area who has some experience dealing with CFS and/or fibromyalgia. For fibromyalgia symptoms, consider seeing a rheumatologist. (Note: Even if this doctor is not covered by your health insurance, you may save in the long run by going to an expert rather than wasting your time and money with a doctor who is skeptical or uninformed.)

Cooperate with the doctor when asked to take a battery of tests to "exclude" other possible illnesses.

Be proactive and informed; if for some reason the doctor still does not "believe" you or tries to dismiss your symptoms, find another doctor.

I've Been Diagnosed, Now What?

Even if you have been diagnosed, you may be disappointed by the treatment options and support. If you are lucky, you may find a doctor who has the expertise, patience and time to help you over time. It's likely, however, that even with a diagnosis you'll still be on your own in many respects. This is why self-education (by reading sites like these) and joining patient communities is important. Only you can make the daily decisions that will enable you to create a lifestyle that best nurtures you and manages your symptoms.

I Didn't Get Diagnosed - Help!

Don't despair. As stated above, the average time it takes for a fibromyalgia diagnosis is five years. Don't wait for official word before taking care of yourself. Get informed and learn as much as you can. Start managing your symptoms now. Even if you aren't given prescription medication, there are many treatment options that involve lifestyle changes, over-the-counter medications, and even alternative treatments such as acupuncture that have helped many.

References:

(2007). Fibromyalgia Diagnosis. Retrieved August 13, 2007, from Fibromyalgia Network Web site: http://www.fmnetnews.com/basics-criteria.php