Fibromyalgia: Alternative
Therapies / Personal Stories
by Danielle Engle
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
