Medical Controversy: If a Disease has Only Symptoms...

Let's perform a simple thought experiment for a moment. Imagine you're a doctor who's faced with patients that are showing symptoms. Symptoms that aren't part of what most of us consider a normal healthy life. They have chronic pain, they have chronic fatigue, they have disturbed sleep and they may have excessive stiffness in their joints. There may be a few other less frequent symptoms in the mix as well.

Now imagine you're that doctor and you start looking into the research. People are suffering but upon further examination there is no obvious source to the problem and there is no obvious physical change independent of the patients pain and suffering that can be tested for. Nothing shows up on X-rays. There doesn't seem to be any unusual pathology. Not only can you not find an underlying cause but it doesn't seem to leave any obvious tissue or nerve damage. It may well be making changes in the patients but medicine hasn't figured out what those changes are yet.

So there are symptoms but no causes. Pain and stiffness but no damage.

Now let me ask you... given that there seems to be no reason for these symptoms and also given that the patients are truly suffering pain you have to answer this question. Is this a disease?

Would it change your answer if I said that between 2 and 4 percent of the population show these symptoms? Would it change your answer if I said that nine out of ten suffers are women?

I don't know about you but my answer would be that this is a disease. Regardless of who's suffering or why. It doesn't matter if women suffer more than men because that fact makes it no less real. It doesn't matter if medicine can't find the cause because people are having the symptoms.

Now given that situation not everyone would come to the same answer. Some doctors would say it's all invented or in the mind's of their patients. Even doctors who would agree that it is a disease wouldn't know what to call it or how to diagnose someone as having it.

Welcome to the mysterious world of fibromyalgia.

A world full of controversy, books, and advice.

Giving the collection of symptoms a name was an important step. Until you have a name it's hard to focus attention on the problem. With a name comes research and some legitimacy. Though the people with fibro don't seem to need physicians to legitimate their suffering.

With a name and a description can come diagnostic criteria. Considering the lack of identified pathology or known agents that may cause fibro it's no wonder the criteria has to be based on the symptoms. If 11 of the 18 spots on the body most often linked to fibro pain are tender when pressed and the patient suffers from chronic (but not constant) pain then there is a diagnosis. (Please note I'm not a doctor and don't use this abbreviated explanation to self diagnose. If you're going to get incorrectly diagnosed I'd prefer it be by a physician with malpractice insurance.)

The criteria may be changing soon. With more research clinicians are coming up with different lists of clinical criteria. I'd expect the entire definition of fibro to change as more is discovered.

Still patients complain that doctors don't take them seriously. There are endless stories online of people who are relieved to finally be diagnosed with something, anything, after being told they didn't have anything.

Pain is nothing? How can you ignore aches and pains in a patient? Am I missing something?

And all the controversy was described, and essentially countered, 15 years ago. In 1995 Don L Goldenberg followed up his 1987 paper Fibromyalgia syndrome: an emerging but controversial condition (abstract only) with the paper Fibromyalgia: why such controversy? (the pdf of the paper is on the linked page).

The paper is very readable. It explains the controversy that has continued to rage for over a decade after its publication. The paper also points out a number of other issues related to fibro. For example the medical community's lack of understanding of chronic conditions:

In many countries, fibromyalgia is a common cause of being categorized as unfit for work and an increasing cause of litigation and compensation. However, this is not a consequence of the fibromyalgia label but rather a consequence of the focus by society on entitlement and the medical professions' inability to deal effectively with chronic physical and psychological pain.

I don't suppose the controversy over fibro will go away soon. More people will be diagnosed. More research will be done. New drugs and treatments will appear even though there seem to be a number of good approaches for self management of fibro. Money will be made offering relief to people with fibro. I'm guessing the controversy over fibro will change. The controversy still seems to be that "many doctors don't accept it as being real". I'd put money on that changing into "why are there still a few doctors who don't accept it".

I'm not going to put any money on whether an underlying cause will be found anytime soon. Pain has to come from somewhere but by what agent or mechanism may take a while to unlock. Without an identified underlying cause there may not be any proposed cures for a while. Still progress is being made. The medical community is more accepting of fibro and more is being done all the time.

Watching the medical community come to grips with fibro isn't much fun for those who have it but at least the progress seems to be in the right direction.