Stephen A. Paget, MD: It is a pleasure today to introduce Dr. Graciela Alarcon, who has a particular interest not only in various autoimmune diseases but fibromyalgia.
What is fibromyalgia and how is it diagnosed?Stephen A. Paget, MD: What is fibromyalgia?
Graciela S. Alarcon, MD: Fibromyalgia is a chronic painful disorder of the muscles, joints, and musculoskeletal system, in which there is no underlying pathology that we can detect.
Alarcon: Well, rheumatoid arthritis affects about 1% of the population, and fibromyalgia affects anywhere from 3% to maybe even 5% of the population.
Paget: What are the typical symptoms?
Alarcon: Patients complain of having pain all over. They also say that their joints and muscles are painful. Some of them say that their joints are actually swollen, even though we as physicians cannot see or feel that swelling. Many have difficulties sleeping. They cannot go to sleep, or they have a partial sleep. They are very much in distress and pain all the time.
Paget: How disabled can they be from this?
Alarcon: Unfortunately, they can become disabled even though they don't have any obvious physical impairment. Because the level of pain is so high, some of them are unable to function, and they become disabled. And those who become disabled tend to do less well than those who continue working despite having joint pain.
Paget: Do people with fibromyalgia actually function less well than, for example, patients with rheumatoid arthritis or lupus?
Alarcon: Yes, it has been shown using standardized instruments that the level of function is equally or more impaired than in patients with rheumatoid arthritis. And when you ask them why, they suggest the pain doesn't let them do the things that they used to be able to do. They become incapacitated because of the pain they have, even though they don't have any structural abnormalities of the tissues, muscles, or joints.
Paget: How do you make the diagnosis and differentiate it from, say, rheumatoid arthritis?
Alarcon: In patients with rheumatoid arthritis, we see obvious swelling of the joints. Even though fibromyalgia patients may say they have joint swelling, that is a more subjective complaint rather than an objective finding because we don't see the swelling. So, you don't find anything in the joints or muscles. But you do find, instead, areas that are very tender, called tender points, and they are very typically located in the trunk as well as in the limbs. And when you simply touch them, patients really respond with an incredible amount of pain, even though the pressure applied is really minimal.
Paget: Do you have to rule out other diagnoses when you are seeing a patient with overall diffuse pain?
Alarcon: The patient's history is very convincing in most cases -- if the patient does not have anything else to indicate a systemic rheumatic disorder. So if the history is convincing, the physical exam is adequate, and the joint and musculoskeletal exam are negative, I think you probably don't need to do anymore. Some physicians will say "Let's just be sure that they don't have anything serious -- hypothyroidism, anemia, or renal failure -- that may explain this bizarre pain" and then get a limited panel of blood tests. I am opposed to that because, in most cases, the tests are going to come back normal. In some cases, you are going to have an abnormal test result that you have no explanation for, such as a high sedimentation rate (a possible indicator of inflammation) that has no correlate whatsoever. In our research, if the patient has been diagnosed with fibromyalgia based on our screening and physical exam,, we don't do any more labs. We stop there, and we take at face value that it's fibromyalgia.
Who should care for the fibromyalgia patient?Paget: Who is the best doctor to make this diagnosis -- the primary care physician or the rheumatologist?
Alarcon: I think that every fibromyalgia patient deserves to be seen by a rheumatologist at least once, and that would be to reassure the patient that there is nothing more serious going on. We have seen plenty of patients who are labeled as having fibromyalgia but who have other diagnoses. And some patients self-diagnose fibromyalgia when, in fact, they have another condition. I have seen people with spinal stenosis and lupus, among other things, who come to the clinic as supposedly having fibromyalgia. Because of that, and because of the guidance rheumatologists can provide to the primary care physician in terms of, I think that every patient needs to see a rheumatologist at least once.
Paget: What causes fibromyalgia?
Alarcon: The cause is unknown, like many other diseases that we treat. I think we are starting to understand the pathogenesis and perhaps the treating factors, but the cause itself is not known. Probably there is some genetic susceptibility to it, but then you end up with this abnormal perception of pain. Many different mechanisms may be under way, such as infectious disease, trauma or emotional distress, for example. You can end up having this altered pain perception by many different ways.
Paget: If you define, from the pathophysiology point of view, that these patients have a hyper-responsiveness to pain, how do you treat this disorder?
Alarcon: The effort should be towards using central-acting drugs that affect pain perception in the brain. We avoid the medications used to treat inflammatory disorders because they act at the peripheral level. They don't have much of a place in a person who doesn't have tissue inflammation or injury. Unfortunately, the medications that we have at the present time are not good enough. Perhaps the best is the combination of an anti-depressant with an SSRI (selective serotinin reuptake inhibitor). We alternate them so that the patient does not lose their benefits over time. I don't think that simple pain relievers have a big role. If you ask patients about narcotics, for example, they get a lot better at first after they take the pain pill. But they say that it's not strong enough, suggesting that they really are developing tolerance to the opioids.
I think that fibromyalgia is very hard to treat. There has to be a comprehensive approach, combining the use of medications with physical therapy and sometimes with psychological or other interventions.
The role of psychological problems in some fibromyalgia patientsPaget: What role do other psychological problems play in this disorder?
Alarcon: There seem to be two different groups of people with fibromyalgia. First, there are those who have the pain syndrome and the tender points, yet who have adapted to the pain and deal with it in a rational fashion. They take some over-the-counter pain medications; they exercise; they fight it off; they keep working. Second, there are those who have an associated psychopathology, who are clearly different in terms of underlying depression, stress, and an accumulating lifetime of psychiatric diagnoses.
What often brings patients with fibromyalgia to the doctor is the added psychopathology and psychological stressors, rather than the pain per se that some patients have developed strategies to deal with.
Paget: Are the psychological problems part and parcel of the illness -- of living with chronic pain -- or is it a facet of their lives and the stresses of everyday activities?
Alarcon: I don't think it is a part of the disease, because you have this group that doesn't have it. So it is really not a condition. However, because we as rheumatologists see these very complex patients with so much psychopathology, some rheumatologists have said that fibromyalgia is a psychological disorder or psychosomatic illness and should be treated just by psychiatrists. I don't think that is the case. I think that some of the cases have psychopathological components and some others don't.
Paget: Do you work in collaboration with a social worker, psychologist, or psychopharmacologist?
Alarcon: The head of our research team is a pain expert who is a psychologist. In the clinic, we have the opportunity to see him or somebody in psychiatry. We have a scale we use to show patients whether they feel guilt, distress, shame, poor self-esteem, etc. If they see that their coping styles are very poor, they are more amenable to seeking help for that than, if from the very beginning, the doctor says "You have psychological problems -- just go see a shrink". That doesn't work.
Paget: What is actually done in your clinic?
Alarcon: First we corroborate or rule out the diagnosis. That's important. Second, we discuss with the patient what is known about it, because many patients are lacking information or have misinformation. Then we go over their medicines to see whether there is anything we can do to modify the treatment regimen. In many cases, they are taking 10 to 20 medicines. You can do very little for that patient in just one visit. But if they are on a few things, we can modify the regimen. Then we send them back to the primary care physician for follow-up, leaving the door open in case the physician feels they need to be seen again. And that is all we can do because we don't really have a team of professionals to treat the patient comprehensively. We are only a research team trying to understand what the condition is. We have not yet gone into a lot of therapeutics in fibromyalgia.
What is the future for the treatment of fibromyalgia?Paget: Your group at University of Alabama has done some extraordinary research in trying to find the actual cause of the pathophysiology. What is the future that the people out there should expect with regard to our understanding and then therapy of this disorder?
Alarcon: As we understand more what are the mediators of this increased pain sensitivity of the spinal cord, I think that there are going to be pharmacological compounds that can be designed to block those mechanisms. I think we are just beginning to do that, but we don't really have the answer yet. I am really very optimistic that over the next few years we are going to have more answers. There are companies that are working on them.
Paget: So people are frustrated, obviously, but should have hope for the future. And just as we have controlled gout and rheumatic fever and other disorders, there is a positive future for people with fibromyalgia.
Alarcon: I think there is, and we should be optimistic. When you consider where we started - with some people saying fibromyalgia didn't exist, I think we have come a long way. I have been working in this field for 12 years. I enjoy doing it. It is really very challenging. We went from doing just simple threshold laboratory assessments to doing really very sophisticated imaging studies of the brain. I think we have come a long way. We are exploring and finding out about a very complex and poorly understood condition.
Paget: Thank you very much.
From an interview with Dr. Graciela S. Alarcon by Dr. Stephen A.Paget