Chronic pain – it’s been my companion in life early on. It served as an early warning system that there was something wrong with my body. It was with this chronic abdominal pain that led to discovering my Familial Adenomatous Polyposis diagnosis at age 8. It was with this that my colon was able to be removed in time to prevent my already turning cancerous polyps from exploding into cancer at age 9.
I can’t say it has served a noble purpose since then though.
Instead, it’s become a minefield for me to navigate; trying to find my way to
balance it and enjoying life’s activities. Throughout the years, I've required physical or occupational therapy 4 times for the management of chronic pain - back pain, neck pain, tendinitis, and nerve pain.
My first year of surgeries, I remember the chronic pain I
began to experience in my back. During my hospitalizations, I required my spine
to be lined with what felt like an endless row of ice packs to merely numb the
pain. I remember the smell of the powder that lined the inside of the ice
packs. I remember how they felt in my hands and the coldness along my bare
back. I remember the agony. Perhaps, if we had realized during that year that
Morphine doesn’t have any effect on my pain it would have been different. We wouldn’t
realize this though until my surgeries during my high school years. The chronic
back pain would have been different too if my doctors had referred me to
physical therapy after my surgeries to strengthen my severed abdominal muscles
so that they would be able to support my back again – thereby reducing or
alleviating my back pain.
The next few years I don’t remember much, and definitely not how I physically felt. This blocking out of memories is part of my coping
mechanisms with the medical PTSD I developed from that first year of surgeries.
I believe I must have been healthier during my middle school years – I didn’t
have any hospitalizations during that time. I wouldn't have hospitalizations
again until I underwent my ileostomy reversal in 2001. This would lead to
chronic pain I haven’t been able to ignore or forget since; pain that changes over
the years but has remained constant.
Following my ostomy reversal, due to adhesions I began
having severe abdominal pain that worsened with ingestion of food or liquid.
The severity of this pain has varied over the years. For the first 6 years
following my ostomy reversal, it was at its peak in severity. I remember every
time we’d go to a restaurant, I’d lie down on the bench at our tables, curled up
in the fetal position trying to cope with my abdominal pain. Ethnic foods
caused the most pain amongst the foods I ate – but there wasn’t any food that
didn’t cause pain. My body finally began to adjust to its “new plumbing” I
suppose, and the pain did decrease in severity after those first 6 years. It
remained at this more manageable level until 2015.
In the meantime, I would develop tendinitis in both wrists and chronic neck pain. Due to malnourishment throughout the years, I developed tendinitis in my wrists and degeneration in my neck allowing for a bulging disc to occur. I underwent a few months of occupational therapy to manage the tendinitis pain and I required 6 months of physical therapy to manage my neck pain. I continue to have chronic pain in my wrists and neck at a tolerable level majority of the time, except for sporadic flare ups.
In 2015, I was malnourished and dehydrated from depression during the
height of my marital issues. As a result, my blood pressure bottomed out while
at work and I fell, hitting my head on hard tile. This event would lead to a
spiral of new pains over the next several years. A spiral that wouldn’t be
fully understood until 2022.
Since I fell at work, I was required to be evaluated at the
ER – which led to my first hospitalization since my last one in 2007. During this hospitalization my pain would once again change, and it changed overnight. The
night before I was discharged, I had a headache during the middle of the night –
a rare occurrence at the time. It wouldn’t stop and I was only ordered Tylenol
and Morphine for pain. I don’t like taking pain medication of any kind – so much
so, I forget that OTC medications such as Tylenol, Ibuprofen, Aspirin, etc.
even exist. I couldn’t sleep and the headache pain wouldn’t stop, so I asked
for Tylenol. That didn’t make a difference and my only option was Morphine. I
didn’t anticipate the Morphine to be effective – it never has been before, and
it was in the middle of the night; I didn’t see any sense to have an on-call
Hospitalist be contacted for a pain medication to be ordered for a headache,
especially when I was to be discharged the following day. So, I tried the Morphine
and as expected, it didn’t help my headache. Instead, it caused severe
constipation that would in turn cause severe abdominal pain. Along with this
pain came severe nausea – something I don’t recall experiencing since having my
7th surgery to remove adhesions following my ostomy reversal. This
new, severe duo has stayed with me ever since waking up that morning following
accepting the Morphine. It was like a switch had been flipped and it would take
months of trial and error with medications to find the right combination for me. I relied on Bentyl and Compazine three times a day. These were the only medications to manage my
pain and nausea so that I could function more easily. Without them, it was
difficult to get out of bed much less participate in life. My doctors couldn’t
find any other reason for the new pain and nausea other than adhesions with
gallstones contributing as well. And this is how it stayed until my 8th
surgery in 2021 to remove my gallbladder and adhesions for the 3rd
Magically, the first 2 weeks after my 8th
surgery, my pain and nausea ceased. I stopped requiring the Bentyl and
Compazine. However, at the 2.5 week mark my pain would once again change – and change
to a level I had never experienced before. The new pain reduced me to becoming
bedbound outside of the time I forced myself to go to work. I lived like this
for 4 months following this surgery. Test after test was completed, medication
changes were made; a cause couldn’t be found, nothing helped to provide even a
glimpse of relief other than lying down. Any activity, even sitting up,
worsened my pain. My GI was at a loss and didn’t know what else to do than to
try Lyrica. Lyrica changed my life within a couple weeks my pain started to
lessen to a tolerable level, and I could start venturing out of my bed outside
of work hours. During this time, I was consulting with every specialist
possible. After 6.5 months, I finally had an answer and treatment plan – it was
Abdominal Migraine that started from my fall in 2015 and was exacerbated by my
Fast forward to August 2022, my pain and nausea were well
managed by my Neurologist treating the Abdominal Migraine, but I still had pain
that worsened by too much activity. While I was able to maintain working and participating
in activities of my choice again – I risked a 3-day pain flare anytime I exerted too much activity. What was too much activity? I didn’t know, especially because
the pain flares wouldn’t hit until 2 days afterwards.
But my life would once again change in respect to my chronic
pain when I asked for physical therapy. Within the course of 3 months, I've started to have days with barely any pain, days that I've felt better than I had in
My body had become severely deconditioned during those 4
months of being bedbound and while my medications are appropriately treating my
nerve pain, my muscles were too weak and contributed to my pain. I required
physical therapy twice a week for 2 months to focus on strengthening each of the 6 major muscle groups to better manage my pain. My progress deteriorated too fast
when I decreased to once a week even with exercising at home. I had to slowly
increase my exercises, incorporating new exercises and their frequency and
level of difficulty to manage the pain flares that occurred after each
milestone in my therapy. There were days that were emotionally difficult for me
as I would be filled with frustration and hopelessness with each “setback” in
the progress I was making. There were times I would quietly cry without control
during my therapy sessions during a pain flare.
Over time, I went from not being able to tolerate 2 days of
activity in a row to completing 10 consecutive days of exercise without a pain flare.
I could have kept going too on that streak, a pain flare didn’t stop me from
continuing on. I was feeling particularly emotionally and physically worn that
I let myself have a day or two of rest – and really our bodies need a rest day
after 6 consecutive exercise days.
The last month of physical therapy I was able to decrease to
a session once every two weeks while maintaining exercises at home. Upon being
able to accomplish this decrease without having a pain flare, I was ready to
graduate from physical therapy.
I’ve learned I’m going to have to maintain exercising at
home on a regular basis to manage the pain from my Abdominal Migraine in conjunction
with my nerve medications or the pain will return to its previous level. This
is a challenge for me. I haven’t required to maintain my physical therapy
exercises in the past. Previously, I was able to maintain the gains I made in
therapy, but not this time. My pain level increase once again with a mere break
in exercises for 4 days or more.
I wouldn’t have been able to reach pain management without
physical therapy. I required the professional guidance of not only what
exercises to do but how to do them, the frequency, etc. to move past my plateau
of activity and pain. Now I know what exercises to do to maintain pain
management and what exercises to do during a pain flare. I went from experiencing
difficulty watering my flower garden, sitting or crawling for a few moments on
the floor, to being able to do army crawling – something I didn’t dream being able
to do following surgery.
I’ve undergone physical therapy before and witnessed the miracles
it provides but I didn’t realize the extent of those miracles until now. There
are 2 main things I will always recommend now as part of managing chronic
illness – counseling for mental health and physical therapy for physical
health; they have repeatedly given me back my quality of life.