Note: this interview is long, but well worth reading! Read what a fibromyalgia expert has to say about living better with fibromyalgia. Interview with: Roland Staud, M.D. Roland Staud, M.D., discusses the possible causes of fibromyalgia, triggers and flare-ups, and coping techniques for fibromyalgia. In this interview, Dr. Staud answers questions about the causes of fibromyalgia, triggers and flare-ups, and relief from fibromyalgia pain and tenderness. Key Points: • Fibromyalgia is likely caused by a person's heightened sensitivity to pain due to changes in the central nervous system • Fibromyalgia is characterized by chronic widespread pain, plus additional symptoms including fatigue, stiffness, and trouble sleeping, which culminate into difficulties with everyday activities • Lifestyle modifications can help patients manage their fibromyalgia Why does fibromyalgia occur? Research has shown that people with fibromyalgia have developed changes to their central nervous systems, also known as the brain and spinal cord. These changes may be the result of some sort of event in the past, something that I’ll call a stressor, and may be physical in nature, like an injury or a fall. The changes that developed from that stressor can have long-lasting results – possibly contributing to the development of fibromyalgia. In the central nervous system of someone with fibromyalgia, it is thought that the signaling from the central and peripheral nervous systems has changed, sometimes drastically. This results in a heightened sensitivity of these signaling structures that leads to increased pain. What symptoms besides pain and tenderness do you see in patients with fibromyalgia? Many people with fibromyalgia constantly feel beat up, as if they’ve run a marathon. Paired with that is exhaustion and fatigue. These two symptoms are further exacerbated by the fact that, despite feeling sore, stiff, beat up, and exhausted, they can’t sleep. Many people with fibromyalgia feel that they would be fine if they could just get some sleep, and they find it more and more difficult to remember what it was like to wake up after a good night’s rest, feeling perfect the next day, or at least significantly better. What do you tell your patients about how to find relief during painful fibromyalgia episodes? I think the basic principle of fibromyalgia therapy is really the regulation of lifestyle. This typically means a combination of: 1) identifying any specific triggers that may have brought on the chronic pain or may exacerbate painful episodes, 2) regulating sleep, 3) relaxation therapies, and 4) medical therapy or prescription medications. Other therapies, such as acupuncture or cognitive behavior therapy, a form of psychotherapy that emphasizes the role of thinking in how people feel and what people do, can be helpful. It is very important to identify any triggers as best as possible. Patients can create diaries trying to pinpoint what happened when symptoms seemed to get dramatically worse. This way they can try to take precautions when similar events present themselves. Patients struggle with making behavioral changes. Of course, behavior changes are the most difficult thing that we physicians can ask people to do. Changing your lifestyle in areas like weight reduction, exercising, and sleep takes discipline. What I often tell patients is not to try and change four or five things at the same time, or there will be a greater likelihood that they will fail, which leads to discouragement. So, I tell people to choose something, one thing at a time, that they can achieve and then do it. Set the bar as high as you can, but since the goal is to succeed at it, make it a realistic goal. Then, once that is achieved, push yourself a little harder. Roland Staud, M.D., discusses fibromyalgia symptoms, coping with fibro fog, the importance of exercise, and getting more from your fibromyalgia doctor’s appointments. Dr. Staud talks more in-depth about other fibromyalgia symptoms and the importance of exercise. He also gives advice about how to get the most out of a doctor’s appointment, especially when you are seeing a new doctor for the first time. Key Points: • Breaking tasks into smaller sub-tasks helps manage daily activities • Fibromyalgia sufferers benefit from regular exercise What are some of the problems typically experienced by fibromyalgia patients in everyday life? The physical problem I most often hear about is that activity hurts. Also, patients are not able to perform physical activities with the same reliability as they once did. They might feel clumsier or start to stumble or drop things more often. They might fall or have problems with fine motor function. These physical impairments are, of course, very distressing to people. There are also cognitive symptoms – symptoms that derive from how people think. People with fibromyalgia find that their assessment and completion of tasks is sometimes impaired. This is commonly known as “fibro fog,” where memory function and processing speed slows down. Some people say that they feel their cognitive processing speed is about 10 to 20 years older than their actual age. How can people cope with this increased difficulty in performing daily tasks such as shopping, household chores, etc.? They should break tasks into smaller sub-tasks. For instance, don’t clean your house in one swoop. Break things up into smaller, more manageable chunks. This seems easy, but it’s not. One interesting thing about people with fibromyalgia is that many of them were high achievers before getting sick. What they consider “normal functioning” is extremely high – they could do two jobs, manage three kids and a husband, and a household. They are frequently setting a very high bar for themselves. It’s natural that they would feel distressed that they can’t do as much any more. What they need to realize is that what they may be able to do now is what many other people probably would consider normal. So, it’s important to be realistic in understanding of your limitations and abilities when breaking tasks up. How can patients start exercising? Exercise helps enormously, but as I said earlier, it’s important to tackle physical activities in small bouts. A good strategy for exercise, for example, might be five minutes exercise, then five minutes of stretching and walking, and then a small amount of aerobic activity. But since the common symptoms of fibromyalgia are pain and fatigue, is it difficult for fibromyalgia patients to incorporate exercise? That’s really the problem, right? But I say this over and over again to my patients and to other physicians: behavioral change is really the crux of fibromyalgia treatment. I know it’s tough to get going, but exercise will turn into benefits over the long run. You need to find the right support structure – find a buddy. Find someone who is going to do this with you, who will pull you up when you fall down or when you’re tired. It is very, very hard to do this alone. It takes lots of work and lots of education along the way. I provide education materials in my office that provide resources for reading, websites, and other important places patients can look for information. Does exercising get easier over time? Yes, absolutely. For the great majority of people, it gets easier. As someone’s muscles get more used to the types of stretches or the types of exercise that they are doing, they are able over time to increase the amount of exercise and types of exercise that they can do. Taking things in small, incremental steps and slowly increasing your effort will be very beneficial. People who keep this up find that they can do more with either the same amount or less pain, they can have more fun, and they become more satisfied with their lives. This is a crucial part of fibromyalgia treatment. How can patients get the most out of their doctor’s visit? The first step for all fibromyalgia patients is to really find a doctor who knows something about the disease itself. And patients need to educate themselves as well. The second part is to have realistic expectations about what will happen at the appointment. The encounter with the physician, no matter how good he or she is, will not resolve all problems right away. Plus, understand that the physician’s time is limited – so really itemize the list of things that you need to talk about. Focus on what is a priority and ask: What do I need to discuss today? What is very important to me right now? The third part is to not give up hope. We have advanced so far now in our understanding and treatment of fibromyalgia, we can definitely provide relief. I can’t say how much relief exactly, but I’m confident that everyone can get some relief through treatment. About the Fibromyalgia Expert Roland Staud, M.D., is a rheumatologist and a professor of medicine at the University of Florida in Gainesville, Florida, as well as a noted and internationally renowned medical researcher. Dr. Staud’s continuing and cutting-edge fibromyalgia research is supported by the National Institutes of Health and other funding organizations. Dr. Staud is coauthor of Fibromyalgia for Dummies and has authored many medical journal articles on fibromyalgia and other topics.