Deborah A. Barrett, Ph.D.
Fibromyalgia presents a daily struggle. Here are some tips–in no particular order–that have made my life easier and even downright fun. 1. Voice-Activated Software During my first years with fibromyalgia, I was not able to type at all without terrible pain. Even a minute at the keyboard was excruciating. I carefully reorganized my work station taking into account ergonomics: good supportive chair, screen at eye level, wrist and mouse pads. Still I could not type. Then I discovered voice software. What a godsend. Thanks to voice software I finished writing my dissertation and stayed employed. The first version of these articles were written exclusively with voice software. That was in 1994, and the products that seemed space-aged then are now primitive. Single-word speech entry has …
One of the greatest challenges of chronic pain is finding ways to live with others. Sometimes it seems more comforting to stay home alone, where we can relax, tend to our aches, set our own pace, and control our total environment. This would free us from having to explain, apologize, look odd, or feel guilty about the things we have difficulty contending with. We would no longer impose our tortured bodies on anybody else. This fantasy, however, has some major flaws! What does it mean to have a life? Usually, living involves a variety of work, social experiences, and travel that remove us from the cozy nest we try to construct and put us in contact with the outside world. What would it really mean …
The other day, during a casual conversation, a friend told how she had explained my condition (fibromyalgia) to someone else: You know, when you work yourself really hard, so that you feel totally exhausted, and you ache from top to bottom so badly that you cannot even get up? Well that’s how Debbie feels. Only it does not go away. I was floored. I felt tears flooding my eyes. But why? I wondered. Well, because I was understood. My friend showed me that she knew what I was experiencing, how I go about my day. If she were an anthropologist, she should feel successful because she managed a deep understanding of the “native’s experience.” Later, I thought about my friend’s simple explanation of fibromyalgia. Why …
“Have a positive attitude.” How many times have we heard that one? While our emotions can not cause fibromyalgia or chronic fatigue syndrome, they no doubt affect our symptoms. But how can we maintain good thoughts when our bodies feel so lousy? This challenge, of course, does not pertain exclusively to chronic illness, but to any time when things do not go as we wish. But in the case of ongoing illness, seeing the positive presents a continuous struggle. Yet our moods are not perfectly correlated with our physical state. Most likely we can all recall times that despite much pain or fatigue, we were able to cope and even achieve high spirits. Perhaps the weather was perfect, good friends visited, we just accomplished something …
A doctor who has fibromyalgia once told me: “You can have weak muscles that hurt, or strong muscles that hurt.” This statement made a big impression on me. Although exercise will not cure the pain and exhaustion of fibromyalgia, muscle endurance increases our capabilities. The message in the medical literature is clear: people with fibromyalgia who are physically fit suffer less symptoms. The key question is how we get there. How can we get in shape when it hurts just to get out of bed? The answer, like most aspects of dealing with this condition, is not simple. It requires discipline, faith, and lots of patience. But sticking to a personalized exercise program can really pay off. When I first read about the helpfulness of …
“You look fine….” Such words are usually intended as a compliment. Sometimes they provide reassurance. But they can also produce confused feelings when someone is silently suffering. This problem is not unique to fibromyalgia. Parallels are easily drawn with other conditions with controversial diagnoses and uncertain cause, such as chronic fatigue syndrome, posttraumatic stress disorder, and premenstrual syndrome. These disorders can be considered “invisible” disabilities because they are virtually impossible for casual observers to detect. What does it mean to contend with a seemingly invisible medical condition? It does not always work against us, for we can “pass for normal” when we want to. At other times, however, it might be helpful to have a large sign on our forehead saying “PAIN” or some such …
Fibromyalgia is a chronic condition characterized primarily by widespread pain throughout the body. The name fibromyalgia, introduced by Muhammad Yunus MD and his colleagues in 1981, literally means pain in the muscles and tissue. “Fibro” refers to the fascia or connective tissue, “my” to muscle, and “algia” to pain. Other ailments associated with fibromyalgia include fatigue, poor quality sleep, difficulty concentrating, sensitivity to light, noise and cold, and irritable bowel. As many as 2% of the general population may suffer from this condition. No ethnic group seems any more likely to have fibromyalgia; however women develop it approximately 8 times more often than do men. While the medical community does not yet understand the pathology underlying fibromyalgia, more and more information about this condition is …
Paintracking is not about dwelling on your pain — to the contrary! It is an approach to help provide individualized information that increases your control over your condition and your life. “Paintracking,” or studying your body’s responses, helps increase the number and duration of pain-free times. The idea for paintracking grew out of my own struggles with fibromyalgia. At first I had no idea what hit me! Most days I hurt so badly I could barely take care of myself, let alone accomplish any work. Meanwhile I bounced among treatment programs, doctors, medicines, exercise and bed rest. It was extremely frustrating to try so hard, and yet be so confused about what helped, if anything. To top it off, every so often I experienced a …
