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Summer 2008 | Pain in the Hemophilia Population /
Angela Lambing, MSN, NP-C, Henry Ford Hemophilia Center
Pain …Unfortunately for persons with hemophilia,
they are all too familiar with pain, whether it is ‘acute’
pain related to a bleeding episode, or ‘chronic’
pain related to end stage joint disease resulting from chronic
bleeding into the same joint over time.
The concern at this time is whether the issue
of pain is managed well in the hemophilia population. Pain can
be managed in a variety of ways. Pharmacological management
includes the use of oral medications, oral herbal medications
or topical applications. Due to hemophilia, most persons are
discouraged from using nonsteroid medication such as aspirin,
Motrin®, or Aleve®, which affect the functioning of
the platelets, potentially resulting in further bleeding. Acetaminophen
or Tylenol® products can be helpful in managing pain. Older
hemophilia patients infected with Hepatitis C are usually discouraged
from Tylenol® use. Research has shown that even normal individuals
who take 3gm of Tylenol® per day (maximum dose of 4 gm/day)
can have elevated liver enzymes suggesting effects on a healthy
liver. Remaining medications are called opioids, or narcotics.
Short acting opioids such as dilaudid or oxycodone last about
4 hours and can be effective in managing the acute painful episodes
if a bleed occurs. These medicines only need to be taken for
a short time until the bleeding resolves.
 Chronic pain related to deteriorating joints
proves to be a more challenging situation. Long acting opioids
such as morphine, oxycontin, duragesic and methadone can provide
relief over a 10-12 hour period. This can improve the day-to-day
living of the hemophilia patient plagued with end stage joint
disease that makes even getting out of bed in the morning a
challenge.
It is well documented that many patients, regardless
of their illnesses, are trying herbal medications in an effort
to improve their health. The use of glucosamine, capscaicin,
as well as other herbal remedies could help. It is important
that before these medications are tried, patients speak to their
hematologist or treatment center to ensure that the medication
is safe. Most herbal medications may vary in potency and are
not regulated by the FDA.
Topical creams are also helpful to manage pain.
Lidoderm patches can provide local anesthesia to the area. Biofreeze,
capsaicin and ketoprofen gel can also help to decrease pain.
Again, discussing these options with one’s hematologist
or treatment center before trying any medication is extremely
important.
Besides medications, there are a multitude of
non-pharmacological treatments that have been documented to
be helpful for the management of chronic arthritic pain and
therefore can be very helpful for pain management in the hemophilia
patient. Other treatment options that can be explored include:
physical therapy, pool therapy, massage, acupuncture, acupressure,
biofeedback, hypnosis and distraction, just to name a few.
Pain can be debilitating. It can affect not
only your ability to work and attend school, but also social
relationships and interactions with family and friends. That
is why it is so important to ensure that pain is managed well.
The concept of total pain involves its interaction on all aspects
of your being; therefore, pain should be treated in a multi-modal
approach that can assist with pain management in a variety of
ways.
A regional pain study is being spearheaded by Henry Ford Hemophilia
Center in Detroit and Munson Medical Center in Traverse City,
Michigan. The purpose of this study is to explore pain in the
bleeding disorders community. Issues include:
- How acute and chronic pain are described.
- What medicine treatment options are used.
- What non-pharmacological treatment options are used.
- Who manages the pain.
- Whether the pain is well managed.
- How pain affects quality of life.
As a result, a National Pain Study has been
instituted to explore these same issues all across the country.
Once completed and the data analyzed, the goal is to further
develop appropriate educational programs that target the needed
areas regarding pain management. Your input is needed to help
the hemophilia care team better manage your pain. Please log
onto the website www.henryford.com/painstudy and complete a
ten minute questionnaire. You can also call 1-800-580-HFHS (4347);
leave your first name and the best time to be called to complete
the study questions. Spanish translation services are also available.
Pain can be a debilitating condition that can
affect your whole being. It should be managed well. Help your
hemophilia team help you!
Angela Lambing, MSN, NP-C, a nurse practitioner
for 17 years, is certified in adult primary care and geriatrics
with a focus on pain and aging in the hemophilia community.
For the past 7 years, she has served as the Nurse Practitioner
Coordinator of the Henry Ford Hemophilia & Thrombosis Treatment
Center. Lambing has given multiple presentations and has written
several articles on the topics of bleeding and coagulation.
She also serves as a key collaborator for the National Pain
Study.
Henry Ford Health System
2799 West Grand Blvd
Detroit, Michigan 48202
alambin1@hfhs.org
313-916-9094
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