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Transformation and Hope—The Means to Recovery
By Kathleen Campbell, M. Div
Challenges and Setbacks
Recovery has been ragged. I'd improve my function and begin
to get breaks from the pain and then the pain would flare
up and functional progress would slow or reverse. This pattern
to recovery was frustrating and also means the long-term prognosis
is uncertain. Am I just having an extended period of success
or is this the beginning of remission? The challenges and
setbacks to recovery included the following:
Challenges of Stress
Since physical therapy exercises were added gradually, I didn't
experience many pain flare-ups from overdoing it. Increased
stress at work and home flared up the pain fairly regularly
during the 16 months of treatment. Roger Allen had done some
research to suggest that stress can result in a pain flare
up 10 days after the stressful event. This was a pattern I
found also, and helped me understand when I experienced a
setback in getting off the pain medication. There were five
particularly stressful events during the 16 months of treatment:
divorce proceedings that included a trial to settle parenting
arrangements and the division of assets, the unraveling of
my support network when my brother's family and best friend
moved from Tacoma, leaving the church where my brother was
pastor, buying a house and moving from my apartment, and two
periods of overtime at work. These stressors gave me ample
opportunity to observe this 10-day stress-pain pattern. When
the pain flared from these situations, it was generally only
for a day, perhaps two.
Medical Setbacks
There were also three medical setbacks that helped me learn
more about the nature of CRPS and how to treat it. While these
setbacks were depressing, in hindsight I find the knowledge
gained from those experiences helpful as I move beyond therapy
to normal life activities. The first major setback was in
August - six months after treatment began. I developed a shingles
rash in my CRPS foot and up the inside of the leg. It took
me a week to realize I had something other than CRPS because
the burning and aching nerve pain from shingles was like the
CRPS pain, just more intense. I thought I was experiencing
another 10-day stress flare up. The rash of spots was unusual,
but because CRPS also involves skin discoloration, it took
several days before I realized the spots were different than
the more even changes in skin color from CRPS. By the time
I realized I had shingles, my doctor said there were no medications
that would help. I just needed to wait it out and continue
the Tramadol I was taking for the CRPS pain to manage the
shingles pain. Shingles slowed me down, but didn't stop my
activity. I could still walk the treadmill each day and swim,
but cut back the speed and time until the rash began to go
away over the next few weeks. Maintaining activity is important
in reducing CRPS pain, and it's important to do what I can
even when not feeling well.
The second medical setback was that I smashed my foot into
a bathroom cupboard one morning and developed a compression
fracture in my CRPS foot. The pain began increasing over the
next couple of weeks, and the color was not right after I
did this, but again it was hard to recognize something new
might be wrong. My foot never stopped hurting from the CRPS
and the pain from the fracture seemed to be more of the same.
It took a couple of weeks before I began to sense the pain
sensations felt different: they were sharper pains than those
of CRPS. Fortunately, Dr. Barrett did not cast the foot. Roger
warned me about the dangers of immobilizing the foot with
CRPS. Instead, the podiatrist asked me to reduce weight bearing
as much as possible, at least by 50%. He gave me an orthotic
to wear in my shoe, which would transfer the weight to the
heel and way from the fractured metatarsal head. I used a
cane to take some weight off while walking. With no cast,
I was able to keep pumping the ankle and drawing the alphabet
with my foot. Even limited activity helps fight off the CRPS
symptoms of swelling, cold and throbbing/burning pain.
It took 6 weeks for the bone to heal and Dr. Barrett let
me return to physical therapy. In those 6 weeks of inactivity,
I lost most all progress I'd gained in the 6 months earlier.
When I fractured the foot I had just begun pliometrics —
hopping off boxes and other work to begin running for soccer.
I was within reach of accomplishing all my goals. When I returned
to therapy after the fracture, I had to return to the basics
—shoving paper, grabbing a washcloth with my toes, and
back to slower speeds and reduced time on the treadmill. This
setback was overwhelming when I realized all I'd lost. But
after reaching my goals again, I realize that it's still possible
to come back after a setback. I also realized the importance
of continuing to stay active. This extended period of inactivity
brought back all the CRPS symptoms — the burning pain,
the swelling, the muscle weakness and sluggish response, the
cold temperature. I have also noticed this relation between
inactivity and increased pain and stiffness every morning.
Even after a night of sleep when not moving the foot for a
few hours, it takes almost thirty minutes before I can walk
well again.
The third setback was relatively minor compared to the shingles
and fracture. A month ago I missed a step at home and banged
my CRPS foot into it. The bone did not break this time, but
the mishap flared up the pain just as I was getting 3 and
4 days without the Tramadol. Whatever maintains the pain of
CRPS was disrupted, and I needed the Tramadol each day again.
It took nearly three weeks before the pain from this incident
began to subside. I realized after this experience that it
might be important to avoid sports that involve contact. I
also suspect that I'll continue to have setbacks with minor
mishaps like this, but with setbacks I have been able to recover
with patience, work and time. What might take just an hour
or two to heal or stop hurting in my unaffected foot can take
days or weeks in the CRPS foot. This setback also seems a
clear indication to be cautious about any future surgery or
medical intervention in my CRPS foot and leg as it might trigger
a particularly difficult flare up of the pain and other symptoms.
Challenge to Find Someone to Oversee My Treatment Plan
The final challenge to recovery was trying to manage the many
aspects of treatment on my own. In the helpful article Roger
Allen co-authored in Bonica's Management of Pain, he names
the importance of a multidisciplinary approach to treatment.
Thus, it's important for someone to manage or oversee the
entire recovery process. The article suggests that generally
a medical doctor take on that role. This strategy made sense
to me, but was frustrating as I never could find a doctor
to fill that role. Dr. Barrett, my podiatrist who diagnosed
the condition, specialized in surgery, and freely acknowledged
he had a tendency not to look beyond the foot in the healing
process. It was hard to talk with him about anything beyond
x-rays and medications, much less the need for psychological
support, spiritual resources and the details of physical therapy.
Paula Schulze, my family doctor, was empathetic to the challenges
of chronic pain from her own plantar faciitis condition and
was familiar with medications used with CRPS, but didn't seem
to have interest in overseeing the treatment either. Her practice
seemed very busy and she was perhaps as stressed as many medical
doctors seem to be. The Group Health doctors I met were either
ignorant or were bound by company policies to limit time spent
with their patients. Dr. Jaspar, the anesthesiologist who
did the sympathetic nerve blocks, knew the most about CRPS
and treatment options, but was dedicated to his specialty
of blocks and spinal implants. He would not even prescribe
medications, as there was no money in this.
Dr. James Robinson, the doctor at the University of Washington
Pain Center who did a consultation with me in the fall, would
have been an excellent manager for treatment, but he was not
taking on new patients and I would not have wanted to make
the drive to Seattle for regular evaluations. Roger Allen
at the UPS Physical Therapy Clinic was the closest I had to
a manager for this as he put in the time to educate, treat
and advise me on different aspects of treatment. I also thought
about my pastor Joe Miller. He was helpful in that he understood
something of chronic pain from his personal experience with
cluster headaches and back pain a number of years earlier.
He was familiar with some of my medical options even though
neither of us had expertise in this area, and he was the only
professional that I could discuss my theological issues and
spiritual disciplines used in recovery.
In the end, I managed the components of recovery myself.
It was lonely not having one person who understood it all.
I may have felt that way even if I found someone to manage
it. Even if someone understood CRPS, he or she may not have
understood me and the feelings I brought to this. Not finding
a manager may have been a blessing as it meant I took charge
of my own healing. Not relying on any one person during the
treatment process means I found a whole community of support.
It means I got to know and experience many who taught me the
art of healing in their own way: My physical therapists, Roger,
Bob and Jennifer; my physicians, Dr. Barrett and Paula Schulze;
my pastors Joe and Jon at Mason United Methodist Church; my
new friends in the pain support group at church, Dana, Jill
and Phyllis; members of my congregation who shared their own
stories of overcoming suffering in the book study I taught
on Yancey's, Where is God When It Hurts?; and Keven,
a CRPS patient who modeled and shared her process of recovery;
my parents and siblings who listened well; my coworkers who
helped me laugh and supported my treatment process; my friend
Cindy who kept listening even after most went to bed; and
Susan who taught me that hope arises from the ashes of the
past. I am indebted to them all.
During a time of stress a hormone, thyroxine, is released
from the thyroid into the blood stream. This hormone can increase
pain with CRPS, make others irritable, cause insomnia, anxiety
or digestive upsets. The thyroxine doesn't have an immediate
effect because it is wrapped with protein when it is released.
After about 3 days the protein starts to wear away and by
the 10th day, it's fully removed, resulting in the anxiety,
irritability, increased pain, etc. This stress-pain pattern
doesn't explain all CRPS pain flare-ups, but explains some
situations when other factors, such as increased activity,
are ruled out. The same pattern has been found with heart
patients at Boston hospitals. Following heart surgery, patients
had "relapses" about the 9th day, after being released
days previously. Doctors are beginning to bring back patients
on the 9th day to monitor the heart.
» Introduction
» Onset and
Diagnosis
» Transformation
and Hope
»
Things That Didn't Help My Recovery
» Appendix
1: My Goals for Therapy and Recovery from CRPS
» Appendix
2: Physical Therapy Exercises |
