Could it be something else?

This is the first thing you receive when you join the CFS Facts Yahoo group.  If you're newly diagnosed or waiting for a diagnosis, it's recommended reading to be sure that you're getting the right treatment -- too many doctors misdiagnose out of ignorance, and it's important to get the right treatment for the right disease as quickly as possible.

COULD IT BE SOMETHING ELSE?

Yes, it certainly could!

Since there is no definitive blood test for CFS, and many of the tests that will show a problem are not commonplace (either very expensive or available in only a few locations), there are many other diseases that it could be instead. Some have many similar symptoms, some have only a few.

The first alternative is a simple, garden-variety case of the *symptom* of “chronic fatigue”. A lot of doctors (including some who hold themselves out as CFS specialists) don’t realize that chronic fatigue and Chronic Fatigue Syndrome are not interchangeable. You’ll hear us tossing around a lot of symptoms like lightheadedness, full-body excruciating pain, sore throat, swollen glands, fever, digestive problems... if you don’t have those symptoms, the odds are that your doctor is one of those who think CFS simply means you’re always tired. In fact, CFS affects the functioning of the whole body because it affects the central nervous system and causes all those dysfunctions in addition to the fatigue.

Simple fatigue can be caused by ailments as varied as anemia, diabetes, cancer or psychological stress, or by lifestyle such as overwork or a sleep disorder. If you don’t recognize the other symptoms we’re tossing around on the list, we strongly suggest that you get a complete work-up (including psychological evaluation) to check for another cause of your fatigue.

The diagnostic criteria for CFS require that the fatigue be “medically unexplainable”, i.e., that all other fatiguing illnesses must be ruled out. While it is certainly possible that someone with CFS could have something else in addition to the CFS, that something else *must* be treated first, to rule it out as a cause of the fatigue. If your doctor diagnosed you with something else and CFS at the same appointment, he is making the common mistake of thinking that you have CFS because you have chronic fatigue. The diagnostic criteria for CFS, however, require that your other condition must first be brought under control with medication appropriate to that condition, and you still have debilitating fatigue that cannot be explained by that condition.

Another common mistake is thinking that CFS is another name for depression that doesn’t carry the stigma of mental illness. But many symptoms of CFS are not commonly seen in depression. Dr. David Bell writes “The symptoms of CFIDS include joint pain, visual disturbances, muscle pain, sore throat, lymphatic pain, fever, chills, night sweats, urinary frequency, paresthesias (numbness and tingling) and skin rash, none of which are traditionally felt to be symptoms of primary depression.” A depressive who is pushed to exercise will return energized, due to the endorphin rush; a person with CFS who is pushed to exercise will return exhausted and feel worse for 24 hours or more, because of an abnormal physical response to exertion. Unfortunately, too many doctors are unaware of this simple and inexpensive way to differentiate between the two, and force anti-depressants on people who have CFS. Research has repeatedly proven that anti-depressants are useless for the treatment of pure CFS (they do help those patients who have both CFS and depression); if the anti-depressants make you feel better, you may have depression and *not* CFS. On the other hand, if they don’t help at all, or make you feel worse, then you probably have CFS.

Some doctors misdiagnose CFS as “atypical MS”, because the two do share a number of neurological symptoms. Again, there’s a very simple and inexpensive way to differentiate: heat makes CFS patients feel better and MS patients feel worse. Sit outdoors for a few hours on a hot summer day, and see what happens. Dr. Bell points out that “MS patients rarely have muscle pain, lymph node pain, rash or sore throat.”

Lyme disease also shares many symptoms with CFS. If you live or hike in an area where Lyme is prevalent, it’s worth having the test to rule it out. But, again, although there are a number of symptoms that overlap, there are also a number of symptoms that are not shared.

Some doctors try to treat CFS with thyroid medication. While it is true that some patients do suffer thyroid problems as a result of CFS (request the more sensitive test, which tests for both T3 and T4), personally, I have some symptoms from the hypOthyroid list and some from the hypERthyroid list, and my thyroid test was perfectly normal.

If you are female, and anywhere near middle age, some doctors will try to tell you that all your problems are caused by menopause, or perimenopause. Yes, that can cause night sweats (hot flashes) and fatigue, but again, there are many many symptoms of CFS that are not commonly associated with menopause. And, of course, if you’re male, this diagnosis is absolutely impossible!

An old friend who is now an allergist with the Mayo Clinic believes CFS is caused by allergies. I think he has it backward – I didn’t have allergies until I developed CFS. However, if you have a really bad time with allergies, you should have the allergies treated to rule them out as a cause of the fatigue before the CFS diagnosis is made. Similarly, chemical sensitivities can cause fatigue, but a large number of CFS patients report developing chemical sensitivities only after they got CFS.

In patients born before the polio vaccine was available in their birthplace, there is a possibility that the symptoms are caused by Post-Polio Syndrome. According to Dr. Richard Bruno, it’s not necessary to have had full-scale polio to develop PPS; many patients had “Summer Grippe”, a low-grade variant of the polio virus. In the US, the polio vaccine was given to almost everyone by the early 1960s.

Autoimmune disorders, such as rheumatoid arthritis, lupus and Hashimoto’s can also cause symptoms similar (but not identical) to CFS. You should be tested for these before a CFS diagnosis is given.

There’s a “complete” list of CFS symptoms in our Files section (though not every patient will have every symptom). If you have symptoms that are *not* on that list, you may have been misdiagnosed with CFS, and it would benefit you to get a correct diagnosis so you can get the proper treatment.

However, if you’ve read complete symptom lists for the other “look-alikes” in this article (available on other websites), and none of them sound quite right, then it’s highly possible that you really do have CFS, and should find a CFS specialist – or at least a CFS-friendly doctor; there are several lists of them on the web.