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Living with Fibromyalgia: What Helps Me
By Kathy Gamble, RN
Editor’s Note:
Kathy Gamble, a fibromyalgia patient from Florida and graduate of the
CFIDS/Fibromyalgia Self-Help course, works full-time as a nurse.
When I was diagnosed
with fibromyalgia in 1999, it felt like the last straw in my world
coming apart. My divorce had been final the month before, and the year
had already been filled with other emotional traumas. While I was
grateful that the diagnosis explained the aches and the fatigue I had
experienced for several months, having a chronic illness felt like
one more loss.
My doctor reviewed
with me a short list of options for treatment of fibromyalgia that
included medications as well as other treatments such as heat, massage
and stretching. He also advised staying as active as possible and
suggested something I found amusing: “Eliminate unnecessary stress in
your life.” I was taking only over-the-counter pain medications and
did not want to start more medications yet. I preferred to see how I
could manage on my own first. I was still working full-time as a nurse
and I rarely missed work due to my symptoms. Most days I did okay, so I
thought I would just continue on as I always had. I functioned at 75 on
the CFIDS/Fibromyalgia Rating Scale.
Looking for
Answers
However, in my
second year with fibromyalgia, my health declined. I would come home
from work and collapse in bed, unable and unwilling to move. Each
morning brought another struggle to get out of bed, and I would drag
through work. This daily
grind of dragging myself out of bed, struggling through the day and then
collapsing when I got home did not seem to be much of a life. I was too
exhausted to do anything else that had been helpful to me before - all I
wanted to do was rest!
But I knew I
couldn’t keep on like this, so I started to look for more answers. The
thought that there might be other ways to manage this condition
motivated me to look for more information on fibromyalgia. Usually if
one is ready to learn, the teachers appear and I found this to be true
for me in this case
One teacher was a
book by Stacie L. Bigelow titled Fibromyalgia: Simple Relief Through
Movement. The author compared the muscles of a person with
fibromyalgia to wet concrete. She stated that if muscles aren’t moved
frequently, they can stiffen and set, just like real concrete does. She
explained how movement can assist with feeling better from the pain of
fibromyalgia. I found this book to be extraordinarily helpful. It distinguished
between “movement” and “activity” on the one hand and
“exercise”. I learned that I would feel worse if I stayed in one
position for too long. I began to pay attention to how long I was
sitting in a meeting, working at a computer, or even lying down and
resting. I found that a change in position, moving around, or walking
briefly, meant less soreness and stiffness.
Self-Help and
Guaifenesin
Shortly after
reading the book, I started exploring the About.com section on Chronic
Fatigue Syndrome and fibromyalgia. This is where I found out about the
CFIDS Self-Help course, now called the CFIDS/Fibromyalgia Self-Help
course. The course was described as a “blending of Cognitive
Behavioral Therapy with group support and principles of
self-management”. The description was appealing to me, because it
seemed consistent with what
I was gradually learning: that I was the best manager of my condition
and could learn what was helpful and what was harmful to me. I signed
up.
I found in the class
that there were other people like me across the US and in other
countries. Plus, there seemed to be hope, as specific behaviors were
identified that could help to manage the symptoms. The course textbook
alone would have been a benefit, but to have a group that worked through
the chapters together was even better.
I also continued to
explore the CFS/FMS section of About.com. It was here that I first read
about the guaifenesin protocol, and people who claimed wonderful
responses to this treatment. I checked out the linked websites:
www.fibromyalgiatreatment.com and www.guiadoc.com. I was intrigued, so I
ordered the source book, What Your Doctor May Not Tell You About
Fibromyalgia, by Dr. Paul St. Amand. I started the guaifenesin
protocol on my own, as I am a nurse and since I had taken guaifenesin
previously for coughs. After only a few days, I noticed that I had some
energy again. My energy kept improving for the first month or so, and I
didn't seem to have any of the expected worsening symptoms. But then I
experienced the first of several “reversal cycles," in which my
symptoms worsened and I felt as bad as before starting the treatment.
But these have faded over time and I credit guaifenesin with helping to
improve my quality of life.
What Works for Me
In the three years
since being diagnosed with fibromyalgia, I have encountered various
treatments, activities, and learning experiences. I do have to admit
that I really wanted something to “cure” my fibromyalgia. I wanted
to get rid of this condition, like taking an antibiotic for an
infection. I know now there is no single panacea for treating this
condition. But I have discovered ways of being and coping that have
worked for me in managing my health with fibromyalgia. Here is what I
have learned so far, what I have found helps me:
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Resting -
I rest when I need it, and also when I think I don’t need it. When
I listen to my body, it tells me when I need to rest. I do much
better when I listen and respond appropriately than when I ignore
what I am trying to tell myself. I had to learn to rest, as I was
used to using my time “productively.” I had to learn to stop and
rest, and use the self-help course’s definition of rest: lying
down with eyes closed in a quiet environment. Being on the phone or
watching TV while lying down did not qualify as rest.
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Sleeping well
at night - My outlook on life improves dramatically when I have
had a good night’s sleep. In contrast, if I am awake all night or
even part of the night, the next day is difficult. To help me sleep
better, I had to quit staying up late, eliminate stressful evening
activities (like being on the phone), and identify what could help
me get a good night’s sleep. This includes going to bed by 10
p.m., taking 20 to 30 minutes for reading or prayer, and using
medications, as described in the next section.
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Taking
medication as needed - Besides the daily Guaifenesin, I also
take Ibuprofen (Advil, Motrin) during the day as needed, and a dose
of Naproxen (Aleve) at night. I also have a prescription for a
muscle relaxant that I take only at night which usually helps me
with sleep. Sometimes I will add in an Excedrin PM tablet to help
with sleep.
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Using low
heat - Either a heating pad or an electric blanket, depending on
how much and where I ache. If I turn the heat up past low, I start
to feel worse. A warm bath also helps!
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Avoiding
certain foods - I read the Sugarbusters book, The Zone,
and the dietary guidelines in the book on guaifenesin. While I don't
adhere to all their principles, I do feel better when I keep to the
guidelines than when I don't, particularly in avoiding foods with
white sugar.
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Moving/activity
- I feel better if I take "walk breaks" at work or
have some sort of change in position if I have been sitting for more
than 30 minutes. As mentioned earlier, I learned this from reading
Stacie Bigelow’s book. Mild
stretching in the mornings or in the evenings also helps to decrease
some of the aches and soreness, particularly in my lower back.
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Being aware
of how I feel - Denying my pain and not paying attention to
myself and how I feel can lead to my feeling worse, so I have
learned to adjust and do what helps me. At the same time, it doesn't
help me to ruminate on how bad I feel, because then I feel worse and
notice the pain more.
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Limiting
social activities and having a quiet home life - Being around a
lot of people is hard on me, and I have that situation every day at
work. So when I get home, I usually let the answering machine take
the calls, and I keep to myself with just me and my children. It
helps me to be at home in quiet surroundings and to be peaceful.
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Planning for
work - It helps me to have some control over my work hours.
Having to be at work very early or staying late is hard on me but
manageable one or two times a week, as long as I plan for how I will
make up for it on other days. Also, I have learned that I am more
effective if I set a limited number of priorities for each day.
Otherwise, the details can overwhelm me.
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Reframing
- I don't have control over what happens in my day, but I am working
on determining how I will react to what happens. Sometimes that
means choosing not to react or not to respond. For example, I get a
lot of emails at work that contain new assignments or requests for
information. Some are rather demanding. If I responded immediately
to every one of them, I would spend time and energy on things that
may be better handled another way. Now I choose whether to respond
immediately or answer later when I have had an opportunity to think
it through or talk with others first. Sometimes I choose not to
answer at all, and that has helped me on several occasions. I have
either followed up with a phone or a conversation in person to
explain. These strategies have often kept me from reacting
negatively to uninvited demands.
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Scheduling in
recovery time - By scheduling planned time to rest, I can help
defray some of the excesses as they come up. For example, if I have
to stay late at work one day, then I may leave early the following
day. Likewise, when I have company during holidays, I set aside days
before or after when I can have time by myself to rest. By planning
for and scheduling my needed recovery time in advance, I am more
likely to stick to it. This strategy helps me decrease additional
pain or flares from overdoing.
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Seeking help
from outside sources - When life becomes too much for me, I seek
help from outside sources. I have participated in some online and
in-person 12 step groups, and I entered counseling. Both have been
extraordinarily helpful. Also, allowing and requesting help from
others has been helpful. Sometimes this has resulted in positive
development for others, as well as decreasing my burden
tremendously.
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Praying/meditation
- I have found that particularly in times of increased symptoms,
simply to be quiet and reflect or pray can have a very calming
effect.
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Scheduling
massages - It may be painful at the time, but I usually feel
better afterwards.
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Utilizing
aromatherapy - Particularly lavender and some of the citrus
scents, either in candles that I burn or in lotions.
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Taking the
self-help follow-up courses and participating in the alumni group -
I participate in two groups offered to graduates of the
CFIDS/Fibromyalgia
Self-Help class: followup courses and an
alumni group. The followup courses focus on helping people reach
short-term goals. Despite knowing what I need to do to manage
fibromyalgia, putting it into practice is not always easy. The
followup courses have been one of the best opportunities for putting
knowledge into practice through making weekly targets. Even when I
don’t meet my targets, I learn more about myself and what I can do
to manage this condition. The alumni group provides an opportunity
for ongoing support plus discussion of topics related to living with
chronic illness. We all continue to learn from each other through
our responses. We also can keep up with one another through the
monthly “check-ins” with our responses.
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Making a NOT
TO DO list - I pickup up this wonderful idea for me from one
of the other articles on this site! It helped to know what
things I consciously wanted to avoid.
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Over all, my quality
of life has improved dramatically using the strategies I’ve described.
I rate myself currently at 90 on the CFIDS/Fibromyalgia
Rating Scale. I am not back to "normal," but I’ve
learned that that is OK. I don't want to be as driven as I was before
getting fibromyalgia. I have a clearer understanding now of my
boundaries and I do well as long as I stay inside them. It took some
time, but I finally learned that I have to respect and honor my body,
and listen to the messages it gives me. The messages are to slow down,
to learn to "be" and not just "do," and to focus on
what is really important.
Related Articles
| How
I Created a Good Life with Fibromyalgia
Fibromyalgia patient Joan Buchman writes that
while she did not choose to have fibromyalgia, she did have a choice
about how to live with it. Read her account of how she developed a
fulfilling life with and even because of fibromyalgia. From the
Success Stories series.
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| Learning
to Manage Fibromyalgia
Denise Le Clair lived with fibromyalgia for over
20 years before having a name for her suffering. Read how getting a
diagnosis triggered a process of change that produced a greatly
improved quality of life. Also from the Success
Stories series. |
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