Unexplained Illnesses are REAL

Unexplained illnesses may still be real
Sunday, January 27, 2008

Most of the patients who come to see Newark neurologist Benjamin
Natelson have seen many doctors before him. They tell a similar story.
Their diagnostic tests came back normal, and their doctors could not
explain their intense pain or fatigue. Often, they got a similar
message: It's all in their head.

Natelson, a professor of neuros at the University of Medicine
and Dentistry of New Jersey, specializes in treating patients other
physicians do not want to treat. His patients are stricken with
unexplained fatigue and pain. Some have chronic fatigue syndrome,
fibromyalgia or irritable bowel syndrome.

Natelson, the author of "Your Symptoms are Real: What To Do When Your
Doctor Says Nothing is Wrong," published by Wiley, treats patients
whose illnesses do not follow the usual rules of classical medicine.
Despite this, he says many of his patients are very sick. He spoke
last week with Carol Ann Campbell, The Star-Ledger's medical reporter.

Your book looks into what you describe as invisible illnesses. What's
an invisible illness? The way doctors are taught to diagnose illness
-- to look at the patient's appearance and find abnormal medical
tests -- does not hold up in these patients because they look well and
their tests are normal. So the doctor says, "Oh. This must be a
hypochondriac."

Do doctors really tell these patients that their
problems are all in their head? Are you kidding? Often. Somehow the
doctor turns things around in his head and, instead of offering help, blames the  patient for not feeling well. That's inappropriate and stigmatizing. I tell patients that just because I can't figure it all
out doesn't mean that nothing is wrong with them.

What problems do
your patients have? About half are disabled and unable to work. Some
are too fatigued to do household chores. Some are in such pain they
walk around with cushions to sit on, or they use a cane, or they can't
get out of bed. Is there a link between chronic fatigue and breast
cancer? Twenty five percent of breast cancer survivors have severe
unexplained fatigue that could be labelled as CFS. This rate is enormous and suggests there is something about serious disease and/ or its
treatment that leads to long-lasting fatigue. Their fatigue is
invisible to their doctors, but it sure isn't to them.

Many of your
patients have fibromyalgia, described as a disorder characterized by
widespread pain and fatigue. The U.S. Food and Drug Administration re approved a new drug, Lyrica, by Pfizer Inc., to treat fibro. But some critics have argued that fibromyalgia is not a
disease. I don't want to argue whether it is a disease or not. That's
not the point. The point is that people are suffering, and there are
criteria for what that suffering is called. Andthere is a drug that
makes them better.

Do you prescribe Lyrica? This class of drugs has a
history of helping patients with pain. In my clinical judgment these
drugs can help. Having a drug for fibromyalgia will become a standard
of care, good for patients. Lyrica is already a part of my
armamentarium.

Have you accepted any money from pharmaceutical
companies? The UMDNJ Pain and Fatigue Study Center (where Natelson is
co-director) has received funding from the NIH (U.S. National
Institutes of Health) and also funding for therapeutic trials from
Cephalon, Cyberonics and Jazz Pharmaceuticals. I have not personally
received any money from pharmaceutical companies.

What can you do for
your patients? Many other doctors obviously are not able to help them
get better. I believe there really is a path to wellness, outlined in
my book. The wellness plan consists of gentle physical conditioning,
coach and medication. We help fatigue patients learn ways to
reduce the fear of increasing activity. We focus on the positive, and
help patients learn to suffer less and improve the quality of their
lives.

In your book, you write about positive thinking. Isn't this
just another way of telling patients their problems are all in their
head? In any illness, whether it is multiple sclerosis or rheumatoid
arthritis, patients will feel worsewhen they get blue and down. Who
you are and how you feel about yourself and your illness impacts on
how you feel physically. If you can sweep away the negativity,
regardless of the diagnosis, the person will feel better. Several
studies looking at medications for patients with pain and fatigue show
a substantial placebo effect. What does that suggest to you? As a
clinician, it is fascinating. With some anti-depressants we see a 40
percent placebo effect and a 55 percent drug effect. Not a huge
difference. But in practice these drugs really work incredibly well.
The placebo effect will wane after a few months. The drug effects do
not.

How do patients suffering from pain and fatigue feel when their
doctors suggest that there is nothing physically wrong with them? They
go away feeling worse. They feel stigmatized and angry. When that
happens to them more than once or twice they just say, "I'm not going
to see these doctors. I'm going to figure this out myself." That's why
we have a $40 billion market in alternative medicines. The patients
are tired of being rejected.

Don't we need tests and criteria to
diagnose illness? There is no blood test for schizophrenia. No X-ray.
There is no test for migraine headaches. There are many illnesses that
do not fit into the classical diagnostic algorithm taught in med
school. Some doctors just don't know how to deal with pain and
fatigue. Their eyes just glaze over.

Copyright 2008  The Star Ledger
Copyright 2008 NJ.com All Rights Reserved.

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This is the story told by most CFS patients: the doctor turned things around in his mind until it made sense to him.

One of my doctors desperately wanted to diagnose depression.  So, he turned around the report that I lost my job due to increasing symptoms, until it fit what he wanted to hear: that I developed symptoms only after becoming depressed over losing my job.  It's not what I told him, but it's what made sense to him.

When inappropriate medication didn't help, and made me feel worse, he again turned things around in his head to fit his prejudice.  The problem wasn't that he gave me the wrong pills for what ailed me, but that I "didn't want to get better".

To this day, he will not admit that he made a mistake in diagnosing depression.  He will not admit that my previous specialist diagnosis of CFS was accurate.  He still puts all the blame for both the original illness and his inability to cure it squarely on me, "nothing you said made sense."  Yet, when I say the same things to a doctor who knows about CFS, it is instantly clear that I have CFS because I'm a textbook case: I had a virus and never again felt right.  What really didn't make sense was the doctor's insistence that he knew better than I did what my symptoms were, and that he knew better than the specialists what my diagnosis should be.

There's a reason for symptoms.  If it's not instantly apparent, the doctors need to look deeper to find it, and not put the blame on the patient.  As Dr. Natelson says, that's inappropriate.  The symptoms for depression are not the same as the symptoms of CFS; yes, they both include fatigue and cognitive problems related to fatigue, but that's where it ends -- CFS patients will report fever, rash, severe digestive problems, excruciating pain, being light-headed, feeling worse after exercise...  It doesn't take much intelligence to figure out that if depressives feel energized after exercise and CFS patients get worse, that you're not dealing with the same condition, but it's amazing how many doctors don't even know that much about CFS: they hear "fatigue" and don't need to look further, because they think fatigue always means depression.  It doesn't.

If you've tried several different anti-depressants and the patient still isn't getting better, then it's time to think outside the box and look for something other than depression.  The best doctors will do that.  The average doctor will doggedly keep going down the same wrong road until the patient gives up on him and goes home to treat herself.

Then, when the patient says that she's fed up with doctors and doesn't trust them any more, that, too, is blamed on the patient and not on the doctors who proved to her that doctors don't know everything.