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Your Questions about Fibromyalgia -- Answered!
We asked researcher Kim Dupree Jones, PhD., RN, FNP, assistant professor in the Schools of Nursing and Medicine at the Oregon Health and Sciences University, why fibromyalgia has a history of poor diagnosis and what kind of research is on the horizon. Q: I've heard a doctor refer to fibromyalgia as "the garbage pail of rheumatology." Why are some doctors reluctant to recognize and diagnose this disease? A: Unfortunately, I have heard that a lot before. But let's put it in perspective and look at when asthma was first being recognized. Thirty years ago, when someone had shortness of breath, they were told to go to a psychiatrist and calm down. No one treats asthma like that anymore. The problem is that we have a lot of information about what is wrong in fibromyalgia, but our treatments don't line up with the pathophysiology as well now as they will in five years. We need to develop better treatments. Once the treatments are available, the primary care providers will be more willing to treat it. Some rheumatologists are interested more in the autoimmune diseases such as rheumatoid arthritis and lupus. These diseases are treated with new and exciting chemotherapeutic agents. It hasn't been that many years since people with RA were told, "You just have to live to learn with your pain." Now, there are a lot of drugs for those diseases. However, there are still large groups of people who have problems like fibromyalgia and chronic low-back pain, which are not autoimmune in nature. Q: Isn't fibromyalgia an autoimmune disease? A: This is a misconception. Fibromyalgia is not an autoimmune disease. It's a disease in which the brain and spinal cord over-interpret sensation. When you have fibromyalgia, sensations are heightened. Hot is hotter, cold is colder, pain is more painful. We have some patients who can't stand in shower or cover themselves up at night because it's too painful. Fibromyalgia is measured on a continuum in a similar way as diabetes and high blood pressure are measured. There are some diabetics who only have to take some medication and exercise and be fine, while there are others who, despite doing everything right, lose limbs and die early. The same is true for fibromyalgia patients. Some are fine, while others must take disability from work. In taking care of people, we figure out where they are on the continuum. Q: Does this mean a patient with fibromyalgia should see a neurologist rather than a rheumatologist? A: Rheumatologists are pain management experts, so it would make sense for them to see people with fibromyalgia. However, fibromyalgia is so common that my hope is that primary care providers will become the experts in fibromyalgia management.
A: We have had criteria for fibromyalgia since 1990. Since the criteria were created, the National Institutes of Health have conducted studies and numerous articles have been written by professionals. Since that time, awareness of this disease has exploded. Through research, we have identified several pathophysiologic findings that are not there in the "garbage pail" diagnoses. For example, when fibromyalgia patients get a lumber puncture; we see elevated levels of a pain chemical called substance P. Also, if you look at their brain blood flow, they have lots of increased areas of activation in the chronic pain centers. Q: So there are lab tests that can used to diagnose this disease? A: A lot of lab tests to diagnose or better understand fibromaylgia are only used in the research setting. Using them in the clinical setting doesn't help the patient because it doesn't help the problem of not having effective treatments. You can give someone a spinal tap [but it will not] change how we are able to treat them. Many researchers are working on a simple lab test for the office. Q: Why do doctors often dismiss patients with fibromyalgia? A: First of all, anyone who can interpret the medical literature can no longer say it's not a medical condition. Also, it takes a lot of time and energy to see people with fibromyalgia because they have lots of problems. They can have concurrent conditions such as IBS, restless leg syndrome, anxiety and depression. You can see that in the current medical model of a 15-minute office visit does not do much for people with fibromyalgia. The other challenge is our health care system. With our system, the health care providers are reimbursed maximally by either seeing people quickly or doing procedures. Other than trigger-point injections for the muscle-tendon junction, we don't have consistently effective procedure-oriented therapies for all people. It's a condition that requires multiple and long visits. The current system of reimbursement does not encourage people to work on this problem.
A: Many people are not diagnosed with fibromyalgia until all other autoimmune and neurological diseases are ruled out. My philosophy is to start treating the fibromyalgia immediately while considering the other problems Q: Is fibromyalgia chronic or something that can improve or be cured? A: In children it can spontaneously resolve. In adults it less often does. Most often it's chronic. However, I get very excited when I see regional pain and can treat the patient aggressively so they don't trip into full-blown, widespread pain. Q: What are some of the treatments being used? A: There are multiple treatments, and we try to address each symptom. For example, if the patient is having trouble sleeping, and we determine that it is the classic light nonrefreshing sleep of fibromyalgia, we may treat that with a sleep drug, like Ambian. We also treat the pain. The drug class, NSAIDs, are largely ineffective in treating fibromyalgia. A good non-narcotic drug for treating fibromyalgia is Ultram or Ultracet. I usually start patients on that. Then, I give trigger-point injections and may give Zanaflex. Then I might move to short-acting or long-acting narcotic pain medications.
A: Most likely what fibromyalgia patients have what I call "being sick and tired of being sick and tired." We don't have the research to tell if it's the chicken or the egg. Mostly people don't have a refreshing night's sleep and are so weary of living with chronic pain they become depressed. They also may lose their competitive employment because of their condition, lose their finances and lose their health care and then they are on a negative cycle. We do have some patients with preexisting depression. We have also seen that people often improve their fibromyalgia symptoms with an SSRI, like Effexor or Lexapro. I don't treat depression first, unless that is the major symptom. I treat what bothers a patient the most first, which is usually pain or disrupted sleep. You can improve the fibromyalgia by treating the other conditions that are associated with the condition, such as migraines, irritable bowel syndrome and endometriosis. A: We have more research on fibromyalgia than we ever have had. However, given the prevalence and severity of the problem, we need at least 10 times more. Good research findings generate more research findings. This has just begun in fibromyalgia; the first objective marker was identified in 1976. The explosion then occurred in 1990 after the diagnostic criteria were published.
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Until recently, doctors didn't believe fibromyalgia was a real disorder. Because the disease, characterized by chronic pain and hypersensitivity, is difficult to diagnose, a woman who experienced excruciating pain at the slightest touch, such as through wearing jewelry or sleeping under covers, may have been told her symptoms were "all in her head." But thanks to recent research and public awareness, the medical community is taking this once-mysterious disease more seriously.
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