In a March 2005 publication, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)—www.niams.nih. gov—reported that Fibromyalgia (FM) affects 1 in 50 Americans. The disorder affects predominantly women; however, men and children can also have FM. If a woman has a family member with FM, she is more likely to have it. Diagnosis usually occurs during middle age.
Although the cause(s) is unknown, the disorder has been linked to other factors. Frequently, FM seems to be triggered by stressful or traumatic events, repetitive injuries, illness, and certain diseases, including rheumatoid arthritis, lupus, and spinal arthritis. Chronic pain and fatigue are hallmarks of FM. Other symptoms include sleeping difficulties, morning stiffness, headaches, painful menstrual periods, tingling or numbness in hands and feet, increased sensitivity to pain, and problems with thinking and memory.
FM can be very difficult to diagnose and treat. The NIAMS recommends finding a doctor who is familiar with the disorder and its treatment. This decreases the chances of an unnecessary delay in diagnosing and treating the disorder. Treatment often requires a team of professionals that may include a doctor, physical therapist, occupational therapist and other health care providers.
To date, no medicines have been approved for the treatment of FM; however, some doctors treat it with medicines approved for other conditions. Exercise, stress reduction, and uninterrupted sleep are some of the self-help measures that health care providers typically recommend.
Current research in FM is focused on determining: 1) why people with FM have increased sensitivity to pain; 2) the role of stress hormones in the body; 3) medicines and behavioral treatments; and 4) whether a gene(s) is involved.
Self-help and Alternative Therapies
FM support groups offer benefits for people with FM, as well as their friends and family members. People often times encounter a number of obstacles before receiving a diagnosis. The validation and acceptance from a support group may help people recover from the long ordeal of searching for an answer.
Groups differ in makeup and design. Courage Center in Golden Valley offers a FM support group that meets each month (except December). It is facilitated by Wendy Lonn, a mental health therapist at the center. According to Lonn, the group is unique in its focus and format. In addition to providing a support network, the group also teaches attendees about FM, its treatment, traditional and alternative therapies and self-help measures. A library with an assortment of books, magazines and handouts is also available.
When asked to describe the group, Lonn said, “The group is very positive, not a bunch of people sitting around moaning and complaining about how bad it is.” Although this maybe an acceptable form for some support groups, focusing on the negative as opposed to the positive is counter to many of the methods used in helping people with FM manage chronic pain.
Lonn schedules the group calendar according to member requests and interests. The 2006 Winter/Spring schedule features a topic and presenter each month. In January, Jill Cramer, an occupational therapist, taught the group about a non-invasive alternative therapy called healing touch. This technique focuses on the energy field surrounding each person’s body. After the presentation, Cramer led the group in practicing the technique.
In February, Dr. John Nash from Behavioral Medicine Associates will discuss the use of biofeedback. This is a safe, non-drug technique for managing pain and other conditions.
In March, the group will be treated to an excerpt from Laura Littleford’s one-woman show, “Wails Wales Whales.” A writer and performer, Littleford developed FM in 1991. The show is an inspirational story about how she transformed a chronic disorder into opportunities for personal growth and deeper connections to her family and community. After the performance, Littleford is conducting a workshop about using writing as a tool of healing.
The April meeting includes a presentation on soletherapy with speakers Carol Muller and Jocelyne Walberg. Sole-therapy is a method of relaxing the mind and body through sound, oxygen, light and energy therapy.
In May, Valerie Vigdahl, a group member who is also a belly dancer, will introduce belly dancing. She will also demonstrate how to find relief from FM symptoms in the smooth, low impact movement of this dance.
In addition to the topics and speaker’s sessions, one group session is held in a more intimate setting. Members use this time to share their personal stories of triumphs, success and celebrations. It also serves to reinforce their bond as group members with a common challenge.
The mailing list includes 200 people. In addition to the core group of people who attend, regularly, other members attend meetings occasionally. The choice to attend may be based on the topic or on their mobility on a given day. The group is free and is open to new members. For additional information contact Wendy Lonn at 763-520-0327 or wendy.lonn @ courage.org.
Two Women Share Their Story
Louise Dahlgren’s Story:
Louise Dahlgren began having symptoms of FM after a car accident in 1969. After recovery, she wore a back brace and continued working. She continued experiencing pain and fatigue. As time progressed, she experienced chronic pain and fatigue throughout her body. She was prone to having accidents with some causing additional injuries.
As her symptoms worsened and additional problems developed, Dahlgren had to quit working. Several years passed before a neurologist diagnosed the FM in 1998. In addition to FM, she has a host of other problems, including myo-fascial pain, repetitive motion injury, a herniated disc, stress, and depression. She also has nerve damage and arthritis in her right hand.
The additional problems coupled with FM caused difficulties for Dahlgren. At first her husband couldn’t understand the changes taking place in his wife. To assist him, she made a list of her symptoms and corresponding difficulties. After reading this, he developed a new understanding of FM and its impact on her life. Before the diagnosis, neither one of them understood what was happening.
One of the things she regrets most is the loss of friends during this time. Some could not understand why she cancelled social engagements or didn’t attend social functions. Homebound for reasons she could not change, she felt increasingly isolated and alone.
Despite the losses, Dahlgren developed a team of health care providers and a social network. Her team includes a doctor, a physical therapist, an occupational therapist and alternative healers. Since going on disability benefits 4 years ago, Dahlgren relies on Medicare for her health care coverage. She reports that treatments provided under private insurance are not always covered under Medicare.
In addition to treatment, Dahlgren engages in other activities. Recently, she purchased a rocking chair and placed it in a special area. Each day she finds time to sit in the chair, rocking and listening to relaxing music. Gradually, she enters a meditative state where her mind drifts onto happy memories. She finds this activity both healing and restful.
For exercise, Dahlgren uses a therapeutic swimming pool and takes long walks. She also attends a FM support group. During her spare time, she is engaged in a number of special causes. With the advent of global communications, she sends e-mail correspondence to people from many areas and walks of life. It helps her feel connected to society. In describing her outreach work, Dahlgren smiled and said, “I want to live my life as much as I can.” With a little assistance, she’s found many ways of doing so.
Claire Lewis’ Story:
Upon meeting Claire Lewis, or reading her monthly editorial overview in “Today’s Health & Wellness” magazine, it is difficult to imagine her struggles with FM. A successful magazine editor, wife, mother and volunteer, Lewis developed FM 14 years ago.
At the time, she was a graphic artist with plans to open her own business. She was also a single mother with an 8-year-old daughter. A very active person, she practiced yoga and went rollerblading with friends. One day while rollerblading around Lake Calhoun, she veered onto the wrong path.
Within seconds, this relaxing activity turned into a harrowing plummet down a steep hill. Accelerating at a speed too fast to control, she focused on maintaining her balance and shouting warnings to people in her path. Despite her efforts to prevent an accident, she lost her balance and tumbled forward.
She instinctively placed her arms in front of her to brace for the fall. Absent a wrist or kneepad, the wrist in her dominant hand fractured in three places. Her hand was dislocated and her arm was twisted in an awkward position. Friends gathered around her to wait for the ambulance to transport her to the hospital.
In another odd turn of events, the hospital intake staff misplaced Lewis’ chart. While she lay unattended in the emergency room, her wrist and hand became very swollen and painful. With surgery and several months of rehabilitation, her wrist healed.
This injury triggered the onset of FM. There were points of severe pain all over her body. It interrupted her sleep, producing chronic fatigue. She had difficulty with work and activities of daily living. In describing this time, Lewis said, “To roll over in bed, I had to lift my hips with my hands…there were days when I didn’t know if I could get off the bed.”
She sought help from a variety of specialists. When she was diagnosed with FM, she knew that a change of career and lifestyle was needed. “I was terrified of going on disability, even for a short time,” she explained. “I couldn’t imagine not working. I love working.”
With the passion in her voice matching the words she spoke, Lewis shared her love of reading and writing. Based on this, she accepted a position with a book publisher. This marked the beginning of a new career. It culminated with her current position as a magazine editor.
Lewis tried a number of treatments and self-help activities over the years. During the early stages, her rheumatologist prescribed Ibuprofen for the pain. It upset her stomach so much that she had to discontinue it. When he suggested exercise, she tried yoga again. Unfortunately, her movements were so limited that she couldn’t enjoy the benefits it once provided. He suggested a support group. She attended one that utilized peer counseling. This setting proved counter productive for her. Laughing with the signature humor evidenced throughout our interview, she explained, “I didn’t need to be reminded of how miserable I was!”
As with work, she decided to review her options. She decided to invest some time and money in her personal care. “It was that or go on disability,” she explained. “I knew I’d be making a whole lot less if I quit work.” A personal trainer seemed the logical solution.
She found one at the YMCA. Experienced in working with elite athletes, the trainer started Lewis on low-intensity exercises. Over time, he gradually increased her tolerance level for more strenuous exercise. Within a short time period, she enjoyed tremendous gains in strength and self-confidence. Now she is learning the balance between over-protecting herself and pushing herself too hard. She also continues seeing her physical therapist once a week.
About six years ago, Lewis learned another careful balancing act—differentiating between FM and other conditions. When she began experiencing severe headaches and neck pain, she ascribed all the symptoms to FM. With her determination to not miss work, she tried to forge her way through the pain. Eventually, she realized that she had to be examined. To her surprise the doctor diagnosed and treated a sinus infection. He also diagnosed arthritis in her neck and referred her to a rehabilitation center.
At the rehab center, she was assigned a team consisting of a nurse, occupational therapist and physical therapist. The therapy combined with a muscle relaxant for her neck improved her condition. The team recommended a modification of her work station to accommodate the arthritis in her neck. She learned to maintain good posture while sitting, walking, and performing other activities.
Lewis possesses a calm self-assurance and a striking ability to put others at ease. When asked if she’d always been this way, she credited a former supervisor. “When a deadline was looming and we (staff) felt panicked, she would smile and tell us, ‘Don’t worry. Everything will come out alright.’ Eventually, I learned that it did.” When something happens now, Lewis manages the change by reminding herself it will eventually get better. The positive energy glows around her like an aura.
To function effectively, Lewis knows that she must make herself a priority. She organizes her life, makes plans and follows through with them. Her attitude, self-confidence and determination, coupled with her humor, make Lewis a very personable and effective communicator. In an editorial overview of the magazine’s topics one month, she wrote, “…tips that let you take charge of your life.” This statement characterizes Claire Lewis as she is now, 14 years after the traumatic event that triggered FM