Learning to Manage Fibromyalgia

By Denise Le Clair

Note: Denise Le Clair, a graduate of the CFIDS/Fibromyalgia Self-Help course, is an FMS patient from Omaha and the mother of three children. She works full time as a writing tutor at Creighton University and also teaches study skills at a community college.

I have suffered from the pain, confusion, and exhaustion of Fibromyalgia for over 30 years. Since I was diagnosed only 10 years ago, I didn’t have a name to explain my symptoms for most of the time I have been ill. Nevertheless, my life now is vastly improved over my life before diagnosis. I still have bad flares and I still get discouraged, but now I manage the disorder.

I believe my FMS started when I fell down a flight of concrete stairs at age 17. After the fall, I started having serious problems getting solid sleep, and over the following years, experienced increased fatigue, terrible headaches, and an inability to walk without pain or with endurance.

Not having a medical explanation for my symptoms, I felt a sense of shame. I tried to find reasons for my inability to keep up: I must be out of shape physically, or stressed from being a college student, then a new mother, and finally teaching while running a household. But the pain and stiffness in my hips, legs and feet became so bad that I could not walk down stairs without holding on to the walls or around the block without being worn out. I sought medical help, but the doctors, who were for the most part kind, were puzzled and offered little beyond a pep talk and orthotics, which made the pain in my feet and hips much worse.

I decided I must not be a very good person, a fraud. I often felt there was a wall between myself and others. I existed with a kind of disconnect socially and with my own body. I see now that the feelings of distance from others and not being in my body was how I coped with the constant pain--but it used all the energy I had. I came to believe that the pain and fatigue I had was the result of either innate laziness or an emotional disorder.

Finally, when I was 40, I was diagnosed, thanks to an astute GP who put all the symptoms together. I soon experienced some improvement after several months of physical therapy and daily over the counter pain medication. Two years later, a consultation with a rheumatologist added sleep medication. I have a caring doctor now who has helped me through several unsuccessful trials of pain medication and who supports my efforts to help myself.

Last summer I consulted with a psychologist who specializes in pain management and, although we disagreed on some points, the sessions re-confirmed the value of the strategies I have developed over the years, gave me a useful vocabulary for the symptoms of FMS (like fibro fog for cognitive confusion and fibro funk for times I am worn out and fed up), and most importantly, allowed me to fully explore how I feel about having a chronic but hidden illness.

A New Perspective

Getting a diagnosis and slowly accepting that I have a chronic disorder has meant a new perspective. Now I manage all aspects of my life--from the work I do to the bra I wear (no underwires!)--in terms of how it effects the FMS. A good diet, quality sleep, daily, planned rests, and careful pacing along with some medications (both prescription drugs and supplements) have been vital for my improved health. I’ve also made a variety of other changes. For example, I use a massaging showerhead on a flexible hose to ease tight, sore muscles. Because sitting makes me very stiff, I get up and move around every so often at home and at work and make sure I take a short walk everyday. I let my family know my limits, but now that I plan how I will use my energy, I am able to do much more with them. I do not wear myself out so quickly that we do not enjoy outings or get the housework done. I pay attention to how my body reacts and modify as I need to--and because I have been willing to make changes, I have more enjoyment in my life now than I did before.

I have realized that, for me, looking for recovery is too discouraging and adds one more burden--a judgment that I didn't "try hard enough" to get well--no matter that the condition is hardly understood by the medical community. That is not to say I do not seek more information or that I am not willing to try new therapies. Certainly since my initial diagnosis more is understood about CFS/FMS, and more appropriate and beneficial treatments are available. I experiment and evaluate, using what helps and ignoring the rest and remind myself that FMS is real, serious disorder and I am not "faking it," a malingerer, or a whiner.

Furthermore, I am beginning to sort out the FMS from other health problems. For example, the diagnosis of IBS just did not feel right to me, so I consulted an allergist and uncovered several food sensitivities. The FMS is not gone--but the IBS is.

I look back now and give myself credit for all I did accomplish: three children, two college degrees, being a La Leche League leader, surviving a difficult marriage and establishing a life as a single mom. Just as in my life before I was diagnosed, I am active in my church, work, run a household, read voraciously, dance, enjoy friends, but I no longer push myself and carefully plan how to use the very precious energy I have. My life now is vastly improved over my life before diagnosis because my attitude has changed about how to measure my worth. I have an illness I must accommodate, but my worth is not measured in loads of laundry or hours of work, but in the happiness I find in myself and give to others.

My adaptations have not cured me of FMS. I still have bad flares and I still get discouraged, but I have learned how to manage the disorder, so I am no longer overwhelmed. There are, of course, days I wonder how I can possibly endure the pain and fatigue (this is a serious part of the destruction of self-esteem). Then I remember I’ve endured the same, and worse. Now I know and use a variety of strategies like those I have described that help me get through rough times. I have sought whatever help I could to understand and manage this disorder including the self-help course which was very useful. And I make sure I find a way to enjoy other people. It’s a balancing act I wish I did not have to make. The fact that I must does not diminish me. That I do deepens my life.

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