TCPR: Dr. Clauw, you’ve devoted your career to the research and clinical care of patients with fibromyalgia. How do you approach the diagnosis of this illness?
Dr. Clauw: Fibromyalgia is a clinical diagnosis. It is based primarily on the symptoms that people report and it probably should be based entirely upon the symptoms that people report. The only reason to do any laboratory testing or to examine the patient is to get an increased level of comfort that you are dealing with fibromyalgia rather than some other disorder that would cause the same symptoms. Very early in the course of rheumatoid arthritis, lupus, or hypothyroidism, people can have similar symptoms to fibromyalgia. But once someone has had these symptoms for several years, it is fibromyalgia until proven otherwise.
TCPR: Let’s say somebody comes into my office and says that they are in pain. What kinds of questions should I ask to ascertain whether this might be the pain of fibromyalgia
Dr. Clauw: The distribution of the pain is important. The more widespread it is, the more areas of the body that it involves, the more likely that it is a central pain syndrome, of which fibromyalgia is the main example. One of the classic phrases is “I hurt all over.” When I hear that, it is basically fibromyalgia until proven otherwise, because what they are saying is that it is not really localized to just the joints or just the muscles, nor is it localized to one arm or one leg. So when we hear this story, either the patient has some devastating process that is causing inflammation and damage in all their tissues throughout their entire body or they have a problem in the way their body is transmitting pain.
TCPR: Is there a certain quality of pain that gives you a hint that it might be fibromyalgia?
Dr. Clauw: Generally it is described as muscle pain, and often the pain is intermittent and unpredictable, and the pain may be triggered or worsened by stress.
TCPR: When you say “stress,” are you talking about psychological stress or physical stress or both?
Dr. Clauw: Any kind of biological stress. For example, it is clear that fibromyalgia can be triggered by certain types of infections like Lyme disease or Epstein-Barr virus. About 5-7 percent of people with those infections will be left with chronic widespread pain even after they clear the infection. Physical trauma like motor vehicle accidents has been shown to trigger fibromyalgia, in about 5 to 10 percent of people in such accidents. After the first Gulf War there was an epidemic of chronic widespread fibromyalgialike pain syndromes; about 10-15 percent of the veterans of the first Gulf War developed an equivalent to fibromyalgia.
TCPR: Was that “Gulf War Syndrome?”
Dr. Clauw: Yes. It was called Gulf War Illnesses or Gulf War Syndrome, but nearly everyone in the medical community would agree that it looks exactly like what we would call fibromyalgia in the general population.
TCPR: So, let’s suppose that we have established that the pain distribution sounds like fibromyalgia. What associated symptoms might you typically see that would increase the probability of the diagnosis?
Dr. Clauw: We look for other somatic symptoms, such as fatigue, memory problems, and sleep disturbances.
TCPR: Is there a consistent pattern to the fatigue?
Dr. Clauw: There isn’t a consistent pattern. It usually is more or less all day long and it is said to not be relieved by sleep or rest.
TCPR: What types of sleep disturbances are common?
Dr. Clauw: Most fibromyalgia patients do not have trouble initiating sleep; rather they have trouble staying asleep. And then there are other sleep disturbances that are known to occur in higher than baseline frequencies in fibromyalgia patients, such as restless leg syndrome and periodic limb movement.
TCPR: Tell me more about the memory problem. I’ve heard some of my patients complain of “fibro fog.”
Dr. Clauw: Yes. This is a symptom that we really hadn’t picked up on until five or 10 years ago. It is usually a problem with divided attention and working memory; those are the two domains that seem to be most influenced.
TCPR: Any other associated symptoms that you tend to see a lot?
Dr. Clauw: Any of the so-called functional somatic syndromes, like irritable bowel, gastro esophageal reflux, interstitial cystitis, TMJ. Those disorders occur much more commonly in fibromyalgia patients, and fibromyalgia occurs much more commonly in patients with those syndromes – they sort of track together. So for example, if you see a 35-year-old woman who says, “I hurt all over” and has been diagnosed as having migraine and IBS earlier in life, and in addition to hurting all over has some fatigue and a little bit of a sleep disturbance, this picture is basically screaming out fibromyalgia.
TCPR: In psychiatry, we find that malingering can be a problem in disorders with few objective signs, such as ADHD or PTSD. Do you see this with fibromyalgia?
Dr. Clauw: No, we don’t see that very much at all. It might be that we are all getting the wool pulled over our eyes, but the federal disability benefits for fibromyalgia are not very good right now, so someone would be better off claiming a comorbid psychiatric diagnosis as the disability rather than claiming fibromyalgia.
TCPR: Are tender points still used in the diagnosis of fibromyalgia?
Dr. Clauw: I am like most but not all fibromyalgia experts in that I don’t like tender points for diagnostic purposes. The American College of Rheumatology (ACR) criteria specifies that 11 of 18 tender points must be present to qualify for the diagnosis of fibromyalgia. Tender points are useful as research criteria, but they were not meant to be used in clinical practice. They generally don’t work very well in clinical practice, partly because people don’t know how to do a tender point exam and don’t do it correctly, and partly because it is not clear that you really need to have tender points. You can make this diagnosis entirely based on symptoms.
TCPR: Is there a basic underlying neurobiological defect in fibromyalgia?
Dr. Clauw: We believe that fibromyalgia pain is due to a disturbance throughout the entire body leading to augmented pain processing. There is a fundamental underlying neurobiological problem that occurs not just in fibromyalgia, but in disorders like irritable bowel syndrome, headache and low back pain. Pain is a physiologic process, not unlike blood pressure or blood sugar, and there is tremendous variability between one individual and another with respect to their inherent pain sensitivity. In conditions like fibromyalgia, people are on the right side of a bell-shaped curve of an increase volume control in pain processing. This means that they don’t have to have anything wrong in their peripheral tissues for them to be experiencing pain. The pain volume is turned up so loud that they are getting pain signals sent to the brain without the appropriate filtering.
TCPR: We are covering pharmacologic treatment of fibromyalgia in another article in this newsletter. What are some of the nondrug alternatives that you feel have been most beneficial to your patients?
Dr. Clauw: Exercise is huge. What I say to patients – because I believe this – is that exercise is the most effective drug for fibromyalgia. People need to start at whatever level of activity they are currently able to sustain, and then they should go up very slowly and very gradually.
TCPR: Specifically what type of exercise do you recommend?
Dr. Clauw: Anything that gets them active and that they can do year round. They should pick something they enjoy doing. According to a Cochrane review, the most robust evidence is for aerobic exercise, but there is also good evidence for strength training and stretching (Busch AJ, et al., Cochrane Database of Systematic Reviews 2007, Issue 4).
TCPR: The other major non-drug treatment often cited is cognitive behavior therapy (CBT). Do you recommend it?
Dr. Clauw: I am a big fan of CBT. I became a convert by being involved in a research study. About 10 years ago, Dave Williams from our group obtained funding from NIH to study CBT. In this study, he simply added six one hour sessions of CBT to treatment as usual (which including medications and exercise instructions). Lo and behold, what we found was that people who got the six one-hour sessions of CBT were three times as likely at one year to have a meaningful improvement as the people getting treatment as usual (Williams DA et al., The Journal of Rheumatology 2002;29:1280-1286). So I went from being a scientist who knew the data that CBT worked to a clinician who saw how much it was helping my patients and I have since become sort of a zealot.
TCPR: As a rheumatologist, how do you incorporate CBT into your practice?
Dr. Clauw: I go through these concepts in a short introductory lecture with my new patients. I draw a little graph on a piece of paper and I show the pain level on the x-axis and the time on the y-axis. I will show people how fibromyalgia pain often goes up and down and is very unpredictable and I will say, “Is this the way your pain is?” And all fibromyalgia patients will say, “yes.” And I will say, “What do you do when you finally have a good day where your pain is better?” And they will say, “Well I try to get everything done that I haven’t done the last three or four days.” And I say, “How is the pain after that?” “It is usually much worse.” This graphically teaches them the importance of pacing their activity, and teaches them that they do, in fact, have control over the variability in their pain.