Research Notes From the Director
By Dr. Fred Wolfe
Fibromyalgia and all of us
About 9 percent of persons completing NDB questionnaires have indicated that they have fibromyalgia. From time to time you may see articles in the press or on TV about fibromyalgia. However, not everyone knows what it is.We’ve been interested in fibromyalgia for a long time because all of us have some fibromyalgia symptoms. This year the NDB presented some of our analyses at the annual meeting of the American College of Rheumatology (ACR). I thought you might be interested in some of the data.
Strictly speaking, doctors consider that people who have severe fatigue and generalized aching have fibromyalgia. They almost always have tenderness in their muscles and around their joints. People with fibromyalgia sleep poorly and sometimes have symptoms of depression. But if you think about it, almost all of us have some of these symptoms from time to time. Maybe fibromyalgia symptoms are just a general affliction of humankind? Maybe the question is not whether you have fibromyalgia, but how much fibromyalgia you have.
We took two questions from the NDB questionnaire: one about fatigue and another about where you are having pain.We made this into a fatigue-pain scale which we called the Symptom Intensity Scale (SIS). People with a score of 0 on the SIS had no pain or fatigue.A score of 10 indicated maximum pain and fatigue. On average, people with scores greater than 6 would usually be diagnosed by a physician as having fibromyalgia. You can think of this scale as indicating the degree of fibromyalgia people have.
About 26,000 people contributed to the graphs shown here.A memory or thinking problem is a common fibromyalgia symptom, but as can be seen in the upper left hand figure, the more fibromyalgia symptoms we have, the more we report memory or thinking problems. The worse our illness is (upper right), the more severe are our fibromyalgia symptoms. Notice that it isn’t just arthritisrelated symptoms that are associated with fibromyalgia symptoms. Diabetes and hospitalization are also associated with more fibromyalgia symptoms.
So what does it all mean? Perhaps, that all of us have some degree of fibromyalgia symptoms, and that these symptoms can be brought on by the severity of our medical problems and how we deal with them. So when you think of fibromyalgia in the future, consider that fibromyalgia means severe symptoms, but that those same symptoms are part of us all.
The questionnaire changes a little
There is a famous French saying, “the more things change, the more they remain the same” (Le plus ca change le plus ca le meme chose). The NDB questionnaire has a common base of questions that we have to ask each time. It helps us to get continuity and to understand how treatment and other factors effect the outcome of rheumatic illnesses. One change we are making this year is to eliminate the detailed employment questions. They were part of a 5-year study the NDB was doing with Boston University. That study is now over. The results of it will be reported soon.
The elimination of the employment questions will save three pages.We are going to take one of those pages back to ask you some questions regarding your experience with the hassles of having a chronic illness. Also we would like to know what you think of your current medications and what factors might make you want to change treatments. Take a look at these questions. Some of them came from suggestions we received from you.
At the end of the questionnaire there is a place for comments and suggestions. If you think there are areas that are important to you that we are missing, please write them there and let us know your suggestions.
Privacy and what happens to the information you give us
We never allow anyone to see any information that might identify you. Everything that you tell us stays with us. In fact, when we analyze questionnaire information we remove all identifying information. In this questionnaire we are asking you for some information that might seem to be personal. It would help us a great deal if you would tell us the last 4 digits of your social security number. This enables the NDB to distinguish participants with similar names and home cities. However, it cannot be used to identify you in any way. So when you see that question, we hope you will complete it.
As long as we’re at it, I thought you might want to know who sees NDB data. The purpose of collecting information is, of course, sharing the results with others.We report individual serious side effects to the FDA through medication manufacturers. But your identifying information is never reported.We allow medical researchers to study NDB data, but first we remove all identifying information. Even when I analyze NDB information, I don’t have access to your name. You might like to know also that we do not allow commercial sources to have NDB data.
Arthritis or rheumatic disease?
Participants have such conditions as rheumatoid arthritis, lupus, osteoarthritis, fibromyalgia, and many others.We have a hard time describing these conditions in a way that applies to everyone. If we speak of “arthritis” then people with nonarthritis conditions such lupus or vasculitis might think we don’t mean them, but we really want their replies, too. Occasionally, we use the term “rheumatic disorder” or “rheumatic disease” to be all inclusive. But those words are a little awkward and take up to much space. However, if you see them, we hope you will understand why we used those words, and if you see the word “arthritis” we hope you might understand that we really mean everyone who is filling out the questionnaire.
Thank you again for all of your effort.We truly appreciate it.