We’re joined by Dr. Don Goldenberg, chief of rheumatology at Newton Wellesley Hospital in Massachusetts and professor of medicine at the Tufts University School of Medicine. He’s author of the book, “Fibromyalgia: A Leading Expert’s Guide to Understanding and Getting Relief from the Pain That Won’t Go Away.” Announcer: The opinions expressed on this webcast are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsors or any outside organization. And, as always, please consult your own physician for the medical advice most appropriate for you. Judy Foreman: Hello and welcome to HealthTalk Live [HealthTalk Live has been renamed Health Now with Judy Foreman]. I’m your host, Judy Foreman. You hurt all over and you feel exhausted. The problem is the doctor can’t find anything wrong with you. That’s the reality for people living with a condition called fibromyalgia. Tonight we’ll talk to a leading expert about what fibromyalgia is, how it’s treated and why it’s so difficult to diagnose. We’re very pleased to welcome tonight Dr. Don Goldenberg, chief of rheumatology at Newton Wellesley Hospital in Massachusetts and professor of medicine at the Tufts University School of Medicine. He’s the author of the book, “Fibromyalgia: A Leading Expert’s Guide to Understanding and Getting Relief From the Pain That Won’t Go Away.” Dr. Don Goldenberg, thank you so much for joining us tonight. Dr. Don Goldenberg: My pleasure. Judy: Alright. Well, let’s get right to the nitty gritty. In January, the New York Times had a page-one story that was headlined, “Drug Approved. Is Disease Real?” What is fibromyalgia, and is it real? Dr. Goldenberg: Well, fibromyalgia is a common condition which causes widespread pain primarily in the muscles. It’s associated with fatigue, sleep disturbances and a number of overlapping what we call syndromes. And that article and some of the controversy about it signal that it’s often not classified as a disease because it’s hard to find anything definitively wrong with people. They look well. Their blood tests are fine. Their X-rays are fine. And I think of it a lot like I do headaches. You know, I don’t think anybody disputes the fact that headaches are real, but 99 percent of the time, X-rays or MRIs – no matter how fancy we get, we can’t find exactly why the headaches are occurring. And that’s the way I think people have to think about fibromyalgia. It’s a common condition. It causes widespread pain and fatigue. That is very real. But is there a discrete way to diagnose it or see physical findings? No. So if people think about it the way they do headaches, I think they’re comfortable with the fact that it’s a real condition. Judy: Yeah. It’s probably that Western medicine may not be up to the task yet. Dr. Goldenberg: Well, we have trouble with this idea that things have to have objective abnormalities, and the other dispute often with this condition is, is it more mind or body? You’re right. Eastern medicine has more of a holistic approach, and sometimes we pay lip service to that but we don’t really believe it. Judy: Before we go further I should ask you one question, and please don’t be offended. Do you have any financial stake in any of the drug companies that make drugs for fibromyalgia, or any potential conflict of interest we should just alert people to? Dr. Goldenberg: Absolutely. I’m a consultant and I’m on the advisory board for three companies that are involved in making pharmaceutical agents for fibromyalgia, including Pfizer, Lilly and Forest. Judy: Okay. Great. Thank you. So why is fibromyalgia so controversial? Dr. Goldenberg: I think it’s what we were just talking about. Any conditions where you can’t see it well on physical exam and the laboratory tests don’t demonstrate so called objective abnormalities, doctors are often uncomfortable. We’re trained scientifically to find a specific abnormality in organ systems, and in fibromyalgia, like many symptoms that people suffer from, it’s hard to specify exactly what organ system is involved or what the problem is in that organ system. Particularly when people look fine and they’re complaining about pain, which can’t be measured well, or fatigue, which can’t be measured well, doctors get uncomfortable. Judy: Because the symptoms are so subjective? Dr. Goldenberg: Yeah, exactly. And again, I would remind everybody that so are headaches. So is depression. So is sleep disturbance. Many of the ailments that human beings have are in fact what people tell us, and we should believe what people tell us even if we can’t measure it accurately. Judy: Tell us about your own experience and your wife’s experience with fibromyalgia. In the preface to your book you write very eloquently about your own headaches and fatigue and sinus problems, and how eventually psychotherapy helped with these conditions. Tell us about this. Dr. Goldenberg: Well, first of all, as far as my wife, my wife had an eye injury, which was quite serious, in the late 1970s, and following that she developed widespread pain, fatigue and sleep disturbances, none of which she really had experienced before. And being a rheumatologist, I had suspected some type of immunologic disorder based on her symptoms. I didn’t want to treat my wife, so I took her to some of the leading specialists including rheumatologists, neurologists, and immunologists in Boston. And there were many different diagnoses ranging from lupus to multiple sclerosis to that it was all in her head. Around that time or a couple years later, one of our more obscure medical journals had published an article about fibromyalgia. And I was not trained in thinking about fibromyalgia. In fact most of my rheumatologist colleagues in the mid 70s or early 80s would think of it as mainly what people sometimes do now, complaining people who really had no serious medical disorder. But I was intrigued by the article. They talked about some of the symptoms, which sounded exactly like my wife’s. They talked about doing a tender point exam, which I had never done before. I performed this on my wife, and she had all these tender points. I put her on some medications to help with her sleep disturbances, which occurred with the pain, and she felt much, much better. And over the years she’s done fantastically. She ran the Boston marathon about seven or eight years ago. And I knew living with her that it wasn’t in her head. She’s about as sound and as sane as any person could be, and I knew it wasn’t a psychosomatic type of disorder. As far as my own condition, I don’t have fibromyalgia, but like my wife, Patti, I went through a number of years searching for answers, which I think happens a lot with people with these sorts of ill-defined disorders. And I was having some serious problems with sinus infections, which we were just talking about, but in addition caused quite severe fatigue and headache. I had a number of sinus surgeries. I wasn’t cured. I certainly felt depressed after a lot of this, again not getting answers. And I think one of the things that helped me was more of an understanding of the way my mood was involved with the pain and getting therapy from that in a multidisciplinary fashion. Judy: So fibromyalgia affects mostly women, and it’s characterized by kind of chronic widespread pain of unknown origin. That’s basically it, right? Dr. Goldenberg: That is correct. Judy: Why does it affect mostly women? Does anybody know? Dr. Goldenberg: We don’t know. There are a lot of theories about it. Hormones are involved here, although they typically are not the gender related hormones that people think about like estrogen or progesterone. There are some women who do feel a big change in fibromyalgia or fatigue symptoms related to their menstrual cycle, just like with so-called menstrual migraines. But in general, there’s no direct relationship to those hormones. But there is some evidence that women get many of these conditions: fibromyalgia, as well as what I would call syndromes that overlap with it, like chronic migraine, chronic muscular headaches, chronic fatigue and irritable bowel syndrome. All those conditions are much more common in women than men, and there is evidence that it probably has some hormonal link but particularly with what are called neurohormones. Judy: Like what? Serotonin? Dr. Goldenberg: Yes. Neurohormones would include the hormones that are manufactured in the higher centers of the brain, including serotonin, adrenalin, norepinephrine, growth hormone and in particular some of the cortisol type hormones that are involved in the stress hormonal system. Judy: But men have all those hormones too. Dr. Goldenberg: Yes, we do, and they seem to be more vulnerable, these particular hormones, in women than in men. And I know you will talk about this but it’s possible that this also has some relationship to why these conditions sometimes overlap with mood disturbances like depression, which is also about two or three times more common in women than in men. Judy: Yes that’s a good point. And in terms of the age spectrum and women, does it mostly affect premenopausal women, and does it get better at menopause or the other way around or what? Dr. Goldenberg: There’s no rule. We see this in all ages, including lots of children with it. It’s very common in teenagers. It is a bit unusual to begin after menopause, but I have seen it develop at age 60, 70. Overall, it seems to peak between the ages of 30 and 50 in women. Judy: I guess some advocacy groups say that fibromyalgia affects 2 to 4 percent of Americans. That’s a huge number, and it seems kind of high. If a disease is really that common, wouldn’t we know more about it? Dr. Goldenberg: Those are correct figures. If anything, they’re probably an underestimate of fibromyalgia, because there are probably many people out there who are never diagnosed. It occurs in about 3 percent of women and 1 percent of men. By the age of 65 it occurs in 6 percent of women. Judy: So it does get worse after menopause then? Dr. Goldenberg: It does tend to increase as we age, not necessarily after menopause, but people seem to hang on to it. The question about why don’t we know more about it – I mean, I think it’s getting more recognition, but it’s still this issue with these confusing subjective disorders. And even migraine now – we didn’t know how common migraine was 20 years ago. There’s so much more recognition — again, often driven by patients and patient support groups – that people pay more attention to it, so docs are more likely to ask about it and people are more likely to talk about it. Fibromyalgia has been around forever. It’s just more recently that it’s been recognized as an entity. Judy: I’m sort of curious about the pain part and the nervous system. Could you just give us a very quick primer on how the nervous system processes pain in the first place, and how the pain of fibromyalgia may be the same or different from other kinds of pain? Dr. Goldenberg: So the first thing to recognize is acute pain is very different from chronic pain. Acute pain is something that’s very logical. You burn your hand, you feel it right away. You get an injury, you feel it right away. Acute pain protects us. It’s something that is necessary. It seems very logical and follows logical pathways. Chronic pain, on the other hand, is often pathologic. It actually often takes on a life of its own which serves no useful purpose and is often problematic. Within the area of chronic pain, people talk about three pathways. One of them is a very logical pathway. For example, I see people with rheumatoid arthritis. The rheumatoid arthritis, for example, causes a swollen, inflamed joint. That swollen joint creates pain. The pain is felt not only in the joint but in the brain. A second one is more caused – an example would be neuropathic pain, pain from nerve damage, a nerve injury. Again, there is a peripheral, distant source of the pain, but the brain is involved. Then there is this last, very confusing category, which is where fibromyalgia fits, where there’s no obvious peripheral source of the pain in the body – the pain is felt in many parts of the body but probably is more generated in the brain. The medical term for that nowadays is called central sensitization. So the central nervous system, the brain and the spinal cord where we feel pain, where we process pain messages, gets overly sensitized. People often use the word hyperirritable. Therefore, things that wouldn’t bother people normally – light touch, the garments around the neck, heat, cold, and other stressors – are now irritating to the nervous system. And that’s what’s so difficult in fibromyalgia, because patients don’t understand and often doctors don’t. They say, how can you be having this pain? There’s nothing that I can see, because we can’t look very accurately into how the brain and spinal cord are abnormally processing pain. Judy: So I just want to go back to something you said. You said with the central sensitization disorder that the pain originates in the brain. I thought that in central sensitization you started with a peripheral pain and the nervous system just kind of overreacted and kept ongoing to beyond the point where it should, and then it somehow got translated to the brain. Dr. Goldenberg: Well, like everything else with these conditions, what comes first is not exactly clear. Practically, there are many examples that people will have an injury, like a motor vehicle accident, surgery, something else which will traumatize the periphery of the body, and then that sends messages, and then the central sensitization takes over. However, there are many times, maybe the majority, where that is not obvious at all. Mrs. Smith, since age 10, has had a lot of problems with pain, with exhaustion. Her mother told her she had growing pains when she was young. In other words, basically, she’s always had fibromyalgia, and in that regard there’s probably some genetic predisposition to this. There are actually certain genetic factors that have to do with this pain sensitivity. So you don’t have to have a peripheral insult to your body to create central sensitization. Judy: But it almost sounds like – obviously I’m a layman – but it sounds like the brain has learned to be very exquisitely sensitive to its own pain signals. Dr. Goldenberg: I think that’s a good way to say it, yes. Judy: And if it is kind of a learned thing from the brain’s point of view, couldn’t it be unlearned? Couldn’t you train yourself to not respond somehow? Dr. Goldenberg: Yeah, I think that’s one of the major lessons, that just because the brain is super sensitive, there was a learning process and you can change that. I think it’s difficult. But for example, short of medications, which can play a role in that, there are ways in thought processes. There’s something called cognitive behavioral therapy, which is very helpful for pain but also mood disturbances, fatigue and sleep disturbances, where people learn how to better adapt, how to cope better with the pain. One of the worst things that can happen in any of these conditions is when people tend to catastrophize a lot. And we can actually now image the brain when people are catastrophizing, and that, as you might imagine, increases the pain sensitivity. When people are feeling helpless and hopeless, that will do the same thing. So any type of therapy that helps people learn to down-regulate these catastrophizing, helpless, hopeless feelings will be very helpful. Judy: Let’s stick with that point for a second, because I was going to ask you a question a little later on about the brain scans. You mean you have somebody in a functional MRI machine and you ask them to catastrophize and think thoughts – Oh, this is a catastrophe, the pain is never going to go away, it’s going to get worse and worse and worse and then I’m going to die – or something like that, and certain areas of their brain light up? Dr. Goldenberg: Exactly. That’s where the state of the art is right now. Imaging the brain has gotten very sensitive, and it can show how emotions affect brain function, as you can imagine, and certainly affect pain. Pain in the brain now is often looked at in what are called the lateral pain matrix and the medial pain matrix. And the medial pain pathways are very sensitive to affect, to emotion. And if somebody is catastrophizing, their pain levels will light up dramatically. There was a brilliant study about a year ago. The gist of the study is 10 patients with fibromyalgia were compared to 10 healthy controls. They were all females around the same age. And the first part of the study just looked at how the pain in the brain is processed. And as you and I are saying, in the fibromyalgia patients you can see the heightened pain. There are certain pain centers that light up. And if you put pain, like physical pain on the finger of the fibromyalgia women, they light up more intensely than do the control females. Then they did a second study where they asked both groups of people to imagine the worst thing that could ever happen, like the death of a loved one. And the same thing happened. Women with fibromyalgia had more intense activity in brain centers that are in the pain matrix, but these are very much involved in emotion. So there’s a direct relationship in this interface between pain and mood and coping ability. Judy: So these are limbic system things? Dr. Goldenberg: That’s right. That’s part of the limbic system, right. Judy: So if you ask both people to catastrophize, using your word, do the imagined catastrophes light up more in the fibromyalgia patients than in the control group? Dr. Goldenberg: They do, and in the same pain areas that light up with physical pain applied, let’s say, to their thumb. So the brain can’t differentiate well between emotional and physical pain. This idea that you’ve been waiting for something all your life and your best friend gets it rather than you and you feel like you’ve been kicked in your stomach, that’s exactly what happens. Judy: So I want to ask you about diagnostic tests for fibromyalgia. You said there was sort of no objective evidence, and yet here you’ve got brain scans. Why can’t you use brain scans as a diagnostic test? Dr. Goldenberg: Maybe someday. But they’re very expensive. They’re only done in research centers. They vary a lot from time to time so they’re very hard to standardize. So we’re not at the state of the art where we could apply these to diagnostic ways, although I would hope that someday there will be more practical ways that this can be done. But functional MRIs or these imaging studies, PET scans, etc., are extremely expensive. Judy: Yeah. I read that fibromyalgia patients have elevated levels of substance P, which is a neurotransmitter found in the spinal cord. Is this true? And if it’s true, why couldn’t that be used as a diagnostic test? Dr. Goldenberg: It is one of the abnormal neurotransmitters in fibromyalgia. Substance P is one of these groups of neurotransmitters including serotonin and norepinephrine. The trouble is, first of all, the blood samples of these don’t accurately reflect where the action is, which is in the brain. We can’t do assays of the brain. The next best thing is to do a spinal tap. The studies on substance P were done in the spinal fluid. But again, we’re talking about a fairly invasive technique that would never be done in an easy way to make a diagnosis. And it is also very hard to standardize. I think where we’re going with this is it’s very unlikely that assays of blood or spinal fluid will ever be very helpful for a diagnosis, but I can see imaging studies of the brain being made cheaper and practical and used for diagnostic purposes at some time in the not too distant future. Judy: Well, I’ve read also that there are two different kinds of fibromyalgia: post traumatic fibromyalgia, which can happen like in your wife’s case after a serious injury or illness, and primary fibromyalgia, which I gather can be inherited. Tell us about these two different kinds. Dr. Goldenberg: I don’t like this sort of way to separate fibromyalgia, and I’ll tell you why. It goes back to what I had mentioned before. We’ve been tracking this for years, and 50 percent of people with fibromyalgia have no idea when it began, and probably it began from birth. They’ve had it always. The other 50 percent identify a factor that they believe triggered their fibromyalgia. I was well, and as with my wife, she was hit in the eye, or Mary had the most serious flu that she ever had three years ago and she never recovered, or Jane had a horrible stressful situation and that triggered it. And the people are about equally divided. But we can’t tell the difference between all those folks. Whether it was since childhood, whether something traumatic happened, whether the trauma was physical or emotional or a viral illness, eventually the fibromyalgia looks the same. So this kind of implies, if you say post-traumatic, that the trauma caused the condition. There’s clearly a relationship to it I would say initiating some of the symptoms, but it’s possible that looking back, that person had parts of fibromyalgia long before that. It gets complicated because as I mentioned, one of the problems with fibromyalgia is it overlaps a lot with these other conditions like chronic fatigue, irritable bowel syndrome, migraine – and I hear frequently, “Mrs. Smith was suffering irritable bowel at age 18 to 20. At age 30 she developed a bout of depression. At age 36 she had migraine, and now none of those things are there, but she has fibromyalgia.” And one of the ways we think this could tie together would be a genetic predisposition to certain hormonal changes in her body, like these things we talked about: substance P, some of the neurotransmitters like serotonin, norepinephrine, dopamine – and those would have a big relationship to predisposition to develop pain, fatigue and mood problems. Judy: What’s going on with the immune system in all of this? When you talk, it sounds a lot like chronic fatigue, and I’ve read and actually even written enough about chronic fatigue to think that often it’s a low level of infection, and your immune system is pumping out these proinflammatory cytokines and they just kind of keep going and make you feel tired. What’s going on in the immune system with fibromyalgia? Dr. Goldenberg: I think what you said is accurate, but I personally do not like to call either fibromyalgia or chronic fatigue syndrome immune disorders any more than I would say migraine or major depression are. The immune system does get dysregulated a bit in these conditions. It surely could have something to do with the fatigue, but when I think of an immune disorder I think about conditions like HIV infection or lupus or rheumatoid arthritis where people have serious problems with their cellular immunity. They’re more prone to develop serious chronic recurrent infection. There’s no evidence that that happens in fibromyalgia and chronic fatigue. So I think the immune dysfunction is secondary here to something wrong with the neurotransmitters in the brain. Judy: Well, actually, we got a question by e mail from a listener from San Jose in California. She writes, “Some doctors at UC Davis think that fibromyalgia may be a neurological disease as if the impulses of the brain are sending some kind of mixed message of pain to the body. Have you heard of anything like this, and would it be messages from the brain to the body or from the brain to the brain or the body to the brain or what? Dr. Goldenberg: All of the above. I wish I could specify. I think it is a neurologic disorder, and in fact it’s bizarre that rheumatologists are really the ones who put fibromyalgia on the map, because truthfully, it’s a disorder that probably would best be looked at by neuroscientists. And now all the research that I and others in this field do we collaborate strongly with what I would call neuroimmunologists. And as we said, there is something awry from the brain connection to the muscle. And one of the interesting features, although fibromyalgia is typically felt in the skeletal muscles of the body, the neck the shoulder, the back, etc. – every muscle has this mixed message. That’s what causes so called irritable syndrome. That’s what causes irritable bladder. Even ill defined pelvic pain is common in women with this condition. So any muscle of the body is fair game to this sort of hypersensitivity and irritability. But the problem is in the brain muscle connection. Exactly which way this is going, we don’t know. Judy: Well, this new drug, Lyrica, which is made by Pfizer, the recently approved drug, does that act like a regular pain killer? And you did say that you consult for Pfizer, so I guess I should make note of that. But how does Lyrica work, and is it different from other painkillers? Dr. Goldenberg: Right. So let me just quickly review painkillers. The classic painkiller would be an analgesic which sort of blunts how the brain feels pain. And that could be something over the counter like acetaminophen, Tylenol, aspirin, ibuprofen. And in that spectrum all the way to things like opioids or narcotics, like codeine, oxycodone, OxyContin. On the other hand, there are other drugs that work on the central nervous system that affect pain that are not typically analgesics, and their action on pain probably is more related to what we were talking about with how they affect neurotransmitters and central sensitization. And the two classes of drugs that do this – or that I would say have been studied the most – are antiseizure drugs, where Lyrica belongs, and antidepressants. Judy: So Lyrica is already on the market as a seizure medicine? Dr. Goldenberg: It is. It’s very similar to another medicine that’s been around for a long time – gabapentin, or Neurontin. These both were found somewhat serendipitously to help pain. Neurontin was made for seizure disorders and then just coincidentally was found to help pain, and actually has an affect on mood. So it’s been used as a so called “off label” drug [not approved by the FDA] for pain disorders for long periods of time. Lyrica, which is a rather new drug – the pharmaceutical company recognized this, and they decided there might be a market for a new drug for chronic pain. This was the first drug to actually do appropriate tests to go to the FDA with a test result to show some improvement in fibromyalgia patients, although it has also been approved for other pain disorders, like diabetic nerve pain, and that’s how the FDA approved it. Judy: So is the overlap that these drugs like Neurontin and Lyrica kind of damp down excessive firing by nerves? Dr. Goldenberg: That’s right. And they work differently in that regard than do pure analgesics like opioids, or for example ibuprofen or some of the arthritis medicines. And there’s evidence that for example the antidepressants have a little different effect. So all these medicines affect pain, but they affect it in somewhat of a different fashion. Judy: Different mechanisms. Dr. Goldenberg: Exactly. Judy: We have some e mails that have come in. This one is from Kathy, who writes, “I have had a diagnosis of fibromyalgia for 11 years, and I have been a practicing nurse for the past 25. I feel that fibromyalgia is caused by our exposure to the chemicals that we are surrounded by every day. What do you think about this theory?” Dr. Goldenberg: Well, this is a controversial question, and unfortunately there aren’t any good answers. There is some evidence that toxins in the environment certainly make people sick. The issue is whenever we don’t know what’s going wrong with us, it’s easier to focus on the things outside of us than inside of us. And often we feel that exposure to toxins in our environment, at our workplace, etc., can cause the symptoms. There has been some look at this with what’s been called multiple chemical sensitivity, and people with fibromyalgia and chronic fatigue do often claim more issues with chemical sensitivity than the population as a whole. But I would say most of the time when this has been looked at scientifically, we haven’t found specific toxins in the environment that create these conditions. Judy: Okay. We’ve got another e mail from a listener who has asked that we not use her name. She wants to know, “Is there any way to differentiate the symptoms that come from MS, multiple sclerosis, and from fibromyalgia? I have both,” she says. Dr. Goldenberg: An excellent physical examination should be able to, because in multiple sclerosis there are neurologic findings that are not seen in fibromyalgia, both a loss of sensation and a loss of motor strength. Also, generally speaking, in multiple sclerosis there are what are called demyelinating lesions on brain scanning, which do not occur in fibromyalgia. There is actually more fibromyalgia occurrence with multiple sclerosis but also with other immune disorders like rheumatoid arthritis and lupus. No one knows why in chronic illnesses there is more fibromyalgia than the population as a whole. Judy: We got another similar e mail from Pamela, who writes, “Can fibromyalgia get so severe that my body acts as if it has MS or some form of muscular dystrophy?” Dr. Goldenberg: Well, that’s an intriguing question. Fibromyalgia comes in all forms, from very, very mild, so much so that people hardly know they have it, to severe. I always tell my patients that this is not a structural deteriorating disease like my knee arthritis could be, or certainly lilke conditions like multiple sclerosis could be. Parkinson’s can be. So there’s no structural way that the fibromyalgia causes things like MS or muscular dystrophy. It could feel to a person, however, that they’re disabled and deteriorating because of the pain, because of the fatigue, because of the disuse and deconditioning that can occur. Judy: So basically, MS is a progressive disease, even though it can relapse and remit, and it is progressive but fibromyalgia isn’t. Is that correct? Dr. Goldenberg: I don’t even like to – I would say that with MS, structurally in the nervous system progressive changes can occur. Of course, this does not happen with everybody. Some people do fantastically with MS. Fibromyalgia never, ever causes structural abnormalities that are permanent in the brain, in the spinal cord or in the muscles, and that’s very important for people to understand. Judy: Yeah. That prompted a question in my mind, and as luck would have it we got the same question from a listener named Susan. And she writes, “I have fibromyalgia. Does it ever go away?” Dr. Goldenberg: Yes, it does. Fibromyalgia goes away in a substantial number of people. So does chronic fatigue syndrome. The odds of it going away are somewhat related to how long a person has had it. In studies that we’ve looked at, if people have had fibromyalgia or chronic fatigue for two years or under, the chance of the condition going away reaches 70 to 80 percent. If you’ve had it for eight years or longer, it’s much less likely that it’s going to go away. And I’m talking about it going away by itself. I’ve had migraine headaches I think all my life, and I don’t think my migraine are ever going to go away. That would be very unlikely. But I feel that I know how to handle the migraine. I’m coping with it well. I don’t wait for the migraine to go away. I do everything proactively. And that’s how the majority of people should think about fibromyalgia. You don’t wait for this condition to go away. It may, but you do all the proactive things and most people live quite well with fibromyalgia. Judy: Well, why does it go away and why doesn’t it go away in other cases? It is considered a chronic illness, right? Dr. Goldenberg: It is. Judy: Or a chronic syndrome. Dr. Goldenberg: We don’t even consider the diagnosis unless people have had the symptoms for three to six months, so by definition it’s a chronic pain disorder. And the truth is, Judy, we don’t know why it goes away. We don’t know why it comes in the first place in many people. Again, if we understood exactly what these changes were in pain processing, I think we could identify them and more specifically treat them, but, you know, it does go away a lot. And it particularly goes away in some of the people who have pretty mild symptoms, who may hardly even know they have the condition. And again, that makes sense, just like with people who have mild headaches – they tend to go away more than people who have severe headaches. Judy: One thing I’m really curious about: What accounts for the muscle tenderness that people with fibromyalgia report? I’ve actually read that to be diagnosed with fibromyalgia – and I don’t know who made up these rules – but a person has to have 11 of 18 trigger points, or I think you called them tender points before. What are they, and why the particular 18 spots and not a different 18 spots? Dr. Goldenberg: Well, I’m guilty for being part of the committee that made up those so called rules, and I think I should apologize partly, because in fact they’ve been somewhat misleading. Judy: Okay. Dr. Goldenberg: So the tender points are areas of the body that are vulnerable to pain in all human beings, and they stand out in people with fibromyalgia, but that’s not because they’re more pathologically damaged in fibromyalgia, but this reflects the heightened pain sensitivity. For example, many people are tender over the so called tennis elbow location. Many people are tender over the chest wall, which is often called costochondritis looked at by itself, or the hip bursa. So these are points that are vulnerable to begin with. And when we originally used them for the criteria to make the diagnosis of fibromyalgia, they did very well in distinguishing fibromyalgia patients from others, but there is nothing very sacred about having 11 of 18 tender points. That series of tender points with the symptoms do perform well to differentiate somebody with fibromyalgia from somebody with early rheumatoid arthritis. So doctors can use these, but patients and doctors sometimes get misled in that, Well, you can’t have fibromyalgia if you only have six tender points, or you can’t possibly have fibromyalgia if you have 40 tender points. That’s not true, because the tender points are not pathologically damaged tissue. They’re simply proxies of heightened pain sensitivity. Judy: Just a totally wacko question, but if people with fibromyalgia are essentially more sensitive to pain, do they need stronger general anesthesia if they’re having surgery? Dr. Goldenberg: Good question, and nobody has looked at that carefully. I do hear from some people that they do have more trouble with anesthetics, not necessarily that they need more of it, but they have more reaction sometimes to it. But again, usually we’re talking about the difference between chronic pain processing, which is different brain mechanisms than what you’re talking about with acute pain and anesthetics. So it may not be the same processing. Judy: Well, the listeners are definitely on the same wavelength as you and I are tonight. I was about to ask you if strength training helps with fibromyalgia, and at this very moment we have an e mail from Dave who writes, “What kind of exercise, if any, help relieve the pain in the muscles from fibromyalgia?” Dr. Goldenberg: There’s very good evidence that exercise is helpful in fibromyalgia. The first thing I tell people is activity of any type is helpful. Being sedentary is counterproductive in this condition. We try hard to get people into formal, structured exercise programs. The first thing we push is cardiovascular fitness training. The theory is that if you oxygenate the muscles better, some of the pain sensitivity will lessen, and there’s good evidence for that. Walking, treadmill, biking, I love people getting into a water program. The second thing is we try to get people to stretch regularly. And there are a lot of muscles involved here so people should be taught the correct type of stretching or I think they could injure themselves. And then strength training would be the third thing that we introduce, and we use more low resistance, Thera Bands, things like that, rather than try to get people bulked up with heavy weights. So there’s no question that exercise is important. Judy: Okay. And what are some other nondrug treatments for fibromyalgia? Dr. Goldenberg: Again, getting back to one of the things we mentioned before, any type of what I might call stress reduction techniques or cognitive behavioral approaches have been helpful. Judy: Why don’t you just define cognitive behavioral therapy for us? Not everybody may know. Dr. Goldenberg: When a person has a chronic illness, if they can learn how to cope better, understand the condition so they’re not so threatened by that, so they’re not so called catastrophizing, I would say they have better control over the condition – that’s what cognitive behavior teaches people. And it can be done one on one. It can be done in large groups. Psychotherapy is a bit different. Judy: Before you go on to psychiatric therapy, give us an example of the thoughts that someone would have naturally, and then how those thoughts would be changed with cognitive behavioral therapy. Dr. Goldenberg: Let’s say someone is naturally thinking, I can’t do this because I know it’s going to damage my muscles. So with cognitive behavioral therapy, the thought might be changed to, I’m not necessarily going to damage my muscles by doing this activity. We can introduce it slowly over the long run. It’s going to be healthy for my muscles. Another example: If I don’t get nine hours of sleep every night, my chronic exhaustion is going to be much worse. The person is fretting over being able to get to sleep and is up two or three hours worrying that they’re not going to get enough sleep. Cognitive behavioral therapy would be to reinitiate learning about sleep, to teach better time of going to sleep, making more use of sleep techniques, sleep hygiene techniques. So cognitive behavioral therapy involves just learning how to take the symptoms that a person has, not over magnify them, but be practical about them, certainly not hoping to alleviate all the symptoms but allowing people to work better with them to have a more normal life. Judy: Okay. So we’ve had stress reduction and cognitive behavioral therapy and exercise – any other nondrug treatments that help people? Dr. Goldenberg: Part of what I would call the exercise would be relaxation techniques that involve more stretching. Yoga, tai chi, qigong and Pilates would be examples of such. There is some interesting research now about both land and water tai chi for people with fibromyalgia with nice benefit. So I think those are things that people… Judy: Wait one second. I’ve never heard of water tai chi. Dr. Goldenberg: Yeah. You can do anything in the water. You can do yoga and tai chi. The reason water is so nice is because you feel good in the water, particularly if it’s somewhat warm, with the buoyancy, the floating thing. So I think it incorporates some of these relaxation techniques. There have been some studies on meditation and fibromyalgia with positive results, both in large groups and in smaller groups. There is some evidence that acupuncture can be useful in the condition. There have actually been five different studies that I’m aware of in the last six or seven years, two of them very well controlled studies where they used so called sham acupuncture in comparison… Judy: Why don’t you just describe what that is? Dr. Goldenberg: When we do research with drug A, we would like to have a placebo to know that the drug is better than placebo. That’s the gold standard of research in how drugs get approved. When you do other interventions, it’s sometimes very difficult to counterbalance the bias that people believe it, they want it to work. So one of the things with any intervention that’s physical like acupuncture, it’s hard to blind for the bias, both for the patient and for maybe the person doing the acupuncture. So what’s called a sham procedure might be you insert the needle in a place that’s not the traditional acupuncture point, or you don’t insert it in the same way so you can sort of manipulate the condition and the patient won’t be able to distinguish between the so called true acupuncture and the sham acupuncture. Judy: So obviously the acupuncturist – it’s not double blind, because the acupuncturist knows what he or she is doing, but the patients… Dr. Goldenberg: …they can’t, right. Only the patient is blinded to it. That’s right. Judy: And the results of these studies show that real acupuncture does reduce the pain of fibromyalgia? Dr. Goldenberg: Well, they’ve been all over the place. A couple of the studies have shown definite improvement, and a couple of them have shown no difference in sham versus true acupuncture. Then these studies have been criticized in the sense that, well, sham acupuncture is okay too. It may be an appropriate technique, because it’s still doing sort of mind body intervention and getting the good humors flowing. So maybe it’s not the right control, but people do use acupuncture. Judy: Or it might be just the placebo effect of acupuncture, period. Dr. Goldenberg: Exactly. And placebo is not a bad thing to do either. Judy: Placebo is good medicine. Dr. Goldenberg: It is good medicine. You are exactly right. Judy: A lot of times people with fibromyalgia are referred for psychiatric help. Does regular standard psychotherapy help? Dr. Goldenberg: Approximately 40 percent of people with fibromyalgia when they are diagnosed have a major mood problem, and it’s usually depression or significant anxiety disorder. So 60 percent don’t. So anybody who says, Well, everybody with fibromyalgia has a psychiatric illness, that’s absolutely not correct. Those 40 percent of people, they need that psychiatric illness treated appropriately. So referral to a mental health professional for that is very reasonable. Another thing that mental health professionals are very good at, obviously, is using antidepressants. They’re probably better than I am or a primary care physician. And as I think I mentioned earlier, antidepressants can have a pain relieving effect in fibromyalgia. Judy: Wait, let’s just clarify. Antidepressants can have a pain relieving effect in fibromyalgia even if the person is not depressed? Dr. Goldenberg: That’s exactly right. Over and above their effect on mood, these medicines have a pain relieving effect. It’s the same kind of paradox as, you know, antiseizure medicines have a pain relieving effect. We are using them here; the person doesn’t have a seizure disorder. So we will often use antidepressants, various types of antidepressants in people who are not depressed, because they have a pain relieving property in the central nervous system. Judy: What about vitamins and herbs? Are there any kinds of alternative potions that help people? Dr. Goldenberg: Well, there’s been a tremendous amount written about that. I’m not a holistically trained physician. I’m very mainstream. I think I’ve read about these things. There are some chapters in my book. I think I’m open minded. I am not of the school that there is anything out there that has been claimed to help fibromyalgia that are so called nutritional, over the counter dietary things. A lot of people try this. Certainly, it’s the “in” thing to do in our society. It’s more in when there is an illness that doctors don’t have exact answers and terrific medicines for. So it’s natural that people gravitate to this. But I’m not a firm believer that there’s any set diet to follow. There are books that have been written, like fibromyalgia and chronic fatigue cookbooks. I don’t know that there’s a lot of rationale to that. Judy: Okay. So there’s no particular diet trick here? Dr. Goldenberg: Not as far as I’m concerned. Certainly, people sometimes have sensitivity to things that they have to be careful with. If you have sleep disturbances, you should not drink a lot of caffeine in the afternoon or evening. But, you know, these are logical things that people know about it. Judy: We have an e mail question now from Eloise. She writes, “I have Raynaud’s syndrome. Is that ever a symptom of fibromyalgia?” And maybe you could just remind us what Raynaud’s is. Dr. Goldenberg: Raynaud’s is a tendency for the fingers and the toes to turn cold and have color changes on exposure, usually to cold weather. It can be very painful. It’s actually quite common. Maybe 5 percent or 8 percent of people in the United States have it. It’s typically not associated with any illness, but it can be and the illnesses that are associated with it are those that I as a rheumatologist see. They include systemic diseases like lupus, scleroderma, and rheumatoid arthritis. It is a bit more common again in fibromyalgia than in the population as a whole, but not much more. We don’t understand why that is. But it would not be considered to be a typical characteristic of fibromyalgia. Judy: We have an e mail from Carol, and her question is, “What is the link, if any, between fibromyalgia and rheumatoid arthritis?” Dr. Goldenberg: There isn’t any link other than the fact, as I mentioned, that for some reason fibromyalgia occurs more commonly in any person with an immune disorder, and rheumatoid arthritis is an immune disorder. It occurs more commonly in lupus and multiple sclerosis and rheumatoid arthritis, and we don’t understand that. For example, fibromyalgia occurs in let’s say 5 percent of the normal population. It occurs in 40 percent of women with lupus. So it’s eight times more common in lupus, and we don’t know why that is. Judy: So does fibromyalgia in any way explain why some people get multiple autoimmune diseases? Dr. Goldenberg: No, it doesn’t. And again, I don’t believe that fibromyalgia belongs strongly in the autoimmune disease category. I think there’s something there. I think the link is to pain and neurotransmitters, not to classic autoimmunity. Judy: For a patient, does hearing that he or she has fibromyalgia help or make things worse? Dr. Goldenberg: Yeah, that’s a million dollar question that a lot of people – a lot of my peers sometimes even criticize people like myself who have championed the idea. Judy: Yeah, I can imagine it working both ways. Hearing that your pain is real… Dr. Goldenberg: You’re exactly right, Judy. I think the diagnosis can be enabling or disabling. It’s disabling when people latch on to the condition that it’s life threatening, degenerative, going downhill when they use it to avoid activities as a crutch. Judy: Well, let’s just be very clear. Fibromyalgia is not life threatening, nor is it progressive. Dr. Goldenberg: Exactly. Judy: Okay. Dr. Goldenberg: And that’s what we try and tell people right up front. So usually they’re convinced of that, but there are some people, I think it’s quite rare, who, I hate to say it, relish the sick role. They thrive in it. It’s part of their existence. And, you know, I hope no listeners get offended by it, but unfortunately it can happen, and it’s a way that people work through family and societal issues. I don’t think it’s very common here. I think it’s very unusual for people to use fibromyalgia to get insurance disability or other things like that. But I think if people don’t understand and don’t think about the condition like they would headaches or typical back pain, then they can be led down a disabling pathway. I believe the diagnosis in most people, when it’s associated with good education and information, is enabling. First of all, people stop worrying that they have MS or lupus or it’s going to turn into those conditions. They stop running from doctor to doctor getting hundreds of tests and having nothing really show up. And they also stop thinking, like some people do, or maybe their spouse does, you know, “Get with it. It is all in your head.” And they understand that it’s a definite disorder and they can deal with it and it’s not all in their head, so they’re reassured about that. Judy: So what is your message to patients, both in your office and those that are listening? Is it sort of that, hey, this is a real thing, but get on with your life anyway? Dr. Goldenberg: I think that’s a way to think about it, but “Get on with your life” is a little too strong. We all want to get on with our lives. I don’t think most people want to be ill, and I think the idea is how you can best cope with a chronic illness. The trouble with a condition like this, and sometimes the reasons why they’re difficult to cope with is they’re not very visible. It’s often easier – I hate to say it – if somebody has rheumatoid arthritis, because their pain and their suffering are visible. Here it’s not very visible. I think a lot of this, again, goes along with the analogy to how lots of people thought about depression 20 years ago. You know, pull up your boot straps and get on with it. And when depression was found to be an illness associated with neurotransmitters and environment and genetics, people started thinking, well, it’s not just the person needs to get tougher or can’t talk about it any more. And I think that’s part of fibromyalgia. It’s a multifactorial disorder. There is some genetic predisposition. There are hormones associated, there are stressors, and we can’t always control that. Maybe some people’s coping ability is better than others inherently, and we can work on the coping ability, but it’s not just about that. Judy: We’ve been talking to Dr. Don Goldenberg, the author of “Fibromyalgia: A Leading Expert’s Guide to Understanding and Getting Relief From the Pain That Won’t Go Away.” Thank you, Dr. Goldenberg. Dr. Goldenberg: Thank you. Judy: And I’d like to thank you, the listeners, for joining us. Dr. Goldenberg: Thanks a lot. Judy: Until next week, I’m Judy Foreman. Thank you. Good night.
