PKD Life - Spring 2020 - 20

Chronic pain happens because of the stretching
of the kidneys or the liver, the cysts themselves, or
the pressure of these organs on other tissues in the
body. "The pain can be due to the growing kidneys
that are pressing toward the muscles in the lower
back," Dr. Chonchol says.
In fact, more than 70% of people with ADPKD
report back pain, and some 60% experience
abdominal pain, one study revealed.
The pain may be sharp and knifelike, dull and
aching, cramping, or feel like fullness. Episodes of
pain are unpredictable, creating worry and making
it hard to plan around them, Dr. Hogan says.
For people with PKD, pain can become even more
complicated when both the kidneys and liver are
affected. "That can become debilitating in a minority
of people, mostly women," Dr. Hogan says. A recent
study in the American
Journal of Nephrology
showed that pain
and gastrointestinal
symptoms were more
than twice as bothersome among people
with both an enlarged
kidney and liver than
people with cysts in
only one organ.
Veronica Soderstrom,
49, of Cle Elum, Washington, is living proof.
She has struggled with
pain from her cystic
kidneys and liver
since her mid-20s.
"It's almost like being
- Veronica Soderstrom
in the last trimester
of pregnancy with the
extra size of my organs," she says.
Pain has sidelined Soderstrom from camping trips
and other family activities. "There were days I could
barely get out of bed," she says. "I was lucky to make
it to work one day a week."

"It's almost like

being in the last
trimester of

pregnancy with

the extra size of
my organs."

TREATMENT FOR CHRONIC PAIN

"The management of chronic pain is always challenging," Dr. Chonchol says.
Many people find relief with remedies like
ice, heat, whirlpool, and massage. Behavioral
approaches, including psychotherapy and cognitive
behavioral therapy, can also play a role in helping
people cope with symptoms.

20

Here are some other options for
treating the pain of PKD, depending on
the severity.
PAIN MEDICATIONS
Non-opioid medications-particularly
acetaminophen-are the first-line treatment for PKD-related pain. Nonsteroidal
anti-inflammatory medications (NSAIDs)
like aspirin and ibuprofen are sometimes
used short-term, but long-term use can
harm the kidneys.
Opioids, such as hydrocodone or oxycodone, may be needed to control extreme
pain. "A lot of patients don't want to be on
them," Dr. Hogan says. "Some people will
just keep a stash of those and use them
only when they have severe pain."
Tramadol can be useful for moderate
pain, if acetaminophen is ineffective,
Dr. Hogan says. It's wise to see a pain
specialist before and during long-term
treatment with opioids to manage any
side effects and avoid dependence.
OTHER MEDICATIONS
Medications including gabapentin, pregabalin, and tricyclic antidepressants,
such as amitriptyline, may be beneficial
for mild to moderate pain or in conjunction with other pain relief methods.
Relief may also come from tolvaptan,
which was approved in 2018. "An analysis of the data published in the American
Journal of Kidney Diseases showed that by
reducing the cyst size and total kidney
volume size, this drug had a significant
effect on kidney pain in patients," Dr.
Chonchol says.
NONINVASIVE AND
COMPLEMENTARY TECHNIQUES
Although there is little research on
these measures for people with ADPKD,
Dr. Hogan says, some people find they
make a difference.
Alexander technique aims to help people
unlearn ways of sitting, lying, standing,
walking, lifting, and other daily activities
that worsen chronic back and other pain.
It involves working with a trained practitioner to release unnecessary tension.

PKD LIFE * SPRING 2020

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PKD Life - Spring 2020

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