Roadmap for managing pain
Supported by
PURPOSE
Roadmap for managing pain
encourages discussion of pain
related to bleeding disorders.
This guide will demonstrate
different routes to take to
obtain some comfort and relief.
OVERVIEW
1.
The impact of pain on the FAMILY
2.
Pain - The FIFTH VITAL SIGN
3.
The role of the COMPREHENSIVE CARE TEAM in
pain management
4.
A DVOCATING for better pain management
5.
The use of ANALGESICS
6.
P HYSIOTHERAPY – another approach to pain
management
7.
O RTHOPEDIC and SURGICAL management of pain
8.
C OMPLEMENTARY and ALTERNATIVE APPROACHES to
pain management
THE IMPACT OF PAIN ON THE FAMILY
FOR MANY YEARS , PAIN HAS
BEEN SEEN AS AN UNAVOIDABLE
PART OF THE CONDITION —
SOMETHING TO BE SUFFERED ,
OFTEN ALONE AND IN SILENCE .
IMPACT ON THE FAMILY …
THE IMPACT OF PAIN ON THE FAMILY
IN THE LONGER TERM , INEFFECTIVE
PAIN MANAGEMENT MAY LEAD TO :

missing school or work;

missing out on social and family activities;

feelings of futility and hopelessness.
IMPACT ON THE FAMILY …
THE IMPACT OF PAIN ON THE FAMILY
Pain is an almost invisible presence.
Yet it casts a net beyond the person who is directly
affected.
Pain is never suffered alone.
Family members are always aware of the suffering,
although limited in their resources to deal with it.
IMPACT ON THE FAMILY …
THE IMPACT OF PAIN ON THE FAMILY
Families in the bleeding disorder community have
developed ways of dealing with the condition by…

educating themselves about their particular situations;

being open in working with the members of the
comprehensive care teams;

learning to do home treatments;

developing internal strength;

being creative in dealing with problems;

maintaining a sense of hope for the future.
IMPACT ON THE FAMILY
PAIN
– THE FIFTH VITAL SIGN
WHAT IS PAIN ?
“An unpleasant sensory and emotional experience associated
with actual or potential tissue damage, or described in terms of
such damage.”
“I experience pain daily. It can be mild or severe. It can be
relentless. It can sometimes be unpredictable. I associate my
pain with an imaginary companion I like to call the dragon.
This dragon travels with me all day, every day.”
FIFTH VITAL SIGN …
PAIN
– THE FIFTH VITAL SIGN
Pain in hemophilia is usually of two types:
is usually due to
bleeding into joints and
muscles and, more rarely,
the after-effects of surgery.
ACUTE PAIN
is associated
with joint degeneration or
other long-term complications
of hemophilia.
CHRONIC
PAIN
FIFTH VITAL SIGN …
PAIN
– THE FIFTH VITAL SIGN
Pain is always subjective
it is the person with pain who
decides if there is pain or not
and always unpleasant.
It is an emotional experience.
When pain becomes chronic, the actual injury, and even
the physiological responses, may not be visible…
FIFTH VITAL SIGN …
PAIN
– THE FIFTH VITAL SIGN
Recognizing pain as the fifth vital sign puts assessment at the
forefront, and allows the patient and family to create an alliance
with the health care providers against suffering.
All modalities of pain management
physical, pharmacological and psychological
should be part of the therapeutic plan, if beneficial.
FIFTH VITAL SIGN
THE ROLE OF THE COMPREHENSIVE
C A R E T E AM I N PA I N M A N A G E M E N T
All of the COMPREHENSIVE CARE TEAM members are involved
in the assessment and management of pain:

the nurse coordinator

the hematologist

the physiotherapist

the social worker

the rheumatology and orthopedic teams
COMPREHENSIVE CARE TEAM
ADVOCACY FOR BETTER PAIN MANAGEMENT
ADVOCACY...

is a process of promoting a cause on behalf of oneself
and/or others

can help you communicate competently in a calm, yet
assertive way

allows you to work with health care providers to develop
an effective pain management plan.
ADVOCACY …
ADVOCACY FOR BETTER PAIN MANAGEMENT
You are your own best advocate but, depending on the situation,
the role of advocate can be played by almost anyone:

a family member—spouse, parent or sibling—or close friend

a member of the multidisciplinary team at the HTC, including the
nurse, the physiotherapist or the social worker.
“My physician told me she never realized how much pain people with
hemophilia had until she went to a CHS workshop on pain management.
She couldn’t believe how well her patients hid the pain.”
– a 50-year-old man with hemophilia
ADVOCACY …
ADVOCACY FOR BETTER PAIN MANAGEMENT
EFFECTIVE COMMUNICATION STRATEGIES :

Take a buddy.

Prepare ahead.

Be knowledgeable.

Be proactive.

Speak up! Be assertive.

Listen.

Stay calm.

Repeat yourself if necessary.

Be polite and courteous, yet firm.

Focus on the problem, not the people.

Use "I-statements" not "you-statements."
ADVOCACY
THE USE OF ANALGESICS
Most patients with acute pain can obtain relief with the
careful use of common drugs such as…

acetaminophen (Tylenol ® ), or

non-steroidal anti-inflammatory drugs (NSAIDs) such
as COX-2 inhibitor, Celebrex ® , which have less effect
on platelet function than ibuprofen.
The addition of opioids, such as morphine, can increase
the control of severe pain, depending on the individual
patient.
If oral medication is ineffective, intravenous (IV) therapy
is an option. Opioids can be given by IV bolus, or by
continuous administration for even more control.
ANALGESICS …
THE USE OF ANALGESICS
Concerns with opioids…
addiction

abuse

tolerance
Marijuana is probably better to reduce nausea, improve appetite
and promote sleeping than to reduce pain.
Its use must be individualized.
For most patients it is not the magic drug.
Legal access to marijuana is difficult.
Poorly treated pain is detrimental to patients!
ANALGESICS
PHYSIOTHERAPY AN O T H E R A P P R O A C H TO PA I N M A N A G E M E N T
AN EXERCISE OR FITNESS PROGRAM IMPROVES …

muscle strength

confidence and peer acceptance

joint range of motion

feelings of well-being / decreased anxiety

flexibility

release of endorphins

coordination and balance

endurance and weight loss

functional
independence
PHYSIOTHERAPY …
PHYSIOTHERAPY AN O T H E R A P P R O A C H TO PA I N M A N A G E M E N T
A physiotherapist at the HTC can assess the pain and assist in choosing
an exercise or activity program to help reduce pain.

Non-electrical treatments such as hot packs, ice, hydrotherapy,
splinting, foot orthotics and acupuncture

Electrical modalities such as Transcutaneous
Electrical Nerve Stimulation (T.E.N.S.)
PHYSIOTHERAPY …
PHYSIOTHERAPY AN O T H E R A P P R O A C H TO PA I N M A N A G E M E N T
Recommended activities for people who suffer from the pain of arthritis
related to hemophilia are those that have low impact on the joint but allow
mobility, strengthening and cardiovascular exercise.

swimming and aquacise

Tai Chi

yoga

cycling

walking, dancing, bowling and hiking
A P E R S O N W I TH A TAR G E T AN K L E
M I G H T M AK E D I F F E R E N T C H O I C E S
TH AN S O M E O N E W I TH A TAR G E T
ELBOW.
PHYSIOTHERAPY
O R T H OPED IC A N D SU R G IC A L M AN AGEM ENT O F PA IN
SYNOVECTOMY
Removal of the swollen synovium can decrease recurrent
bleeding into a target joint and reduce pain.

radioactive synovectomy

arthroscopic synovectomy

open synovectomy
radioactive synovectomy
ORTHOPEDIC AND SURGICAL MANAGEMENT …
O R T H OPED IC A N D SU R G IC A L M AN AGEM ENT O F PA IN
JOINT REPLACEMENTS
The damaged joint and adjacent bone
are removed and replaced with plastic
and metal components (knee) or with
a metal ball and a plastic cup (hip).
ORTHOPEDIC AND SURGICAL MANAGEMENT …
O R T H OPED IC A N D SU R G IC A L M AN AGEM ENT O F PA IN
OTHER SURGERIES

Removal of small bony growths around the joint margins (cheilectomy)

Fusion of the joint to leave a painless immobile joint (arthrodesis)

Removal of the radial head to improve rotation of the forearm

Removal of the ball part of the femur to allow a fibrous union to
develop. This may be done if a hip replacement fails

Removal of a wedge of bone from the femur or tibia to realign the leg
and reduce pain (osteotomy)
“Ultimately, the operations—replacements and fusions—were godsends and did relieve the pain. I
do not run or skate and I avoid stairs like the plague, but my wife and I play golf—I still have a
slice—and I am able to enjoy travel and visit family and friends.”
– a 43-year-old man with hemophilia
ORTHOPEDIC AND SURGICAL MANAGEMENT
C O M P L E M E N TA RY A N D A LT E R N AT I V E
AP P R O AC H E S TO PA I N M A N A G E M E N T
A complementary therapy is used TOGETHER
with conventional medicine.
Alternative medicine is used IN PLACE OF
conventional medicine.
COMPLEMENTARY
|
ALTERNATIVE APPROACHES …
C O M P L E M E N TA RY A N D A LT E R N AT I V E
AP P R O AC H E S TO PA I N M A N A G E M E N T
While there is scientific evidence supporting some
Complementary and Alternative Health Care (CAHC)
therapies, for most there remain unanswered
questions regarding safety and efficacy.
CAHC therapies can be divided into five categories, or domains:

alternative medical systems (homeopathy, naturopathy…)

mind-body interventions (meditation, biofeedback…)

biologically-based therapies (herbs, vitamins…)

manipulative and body-based methods (chiropractic, ostheopathy…)

energy therapies (Reiki, qi gong…)
COMPLEMENTARY
|
ALTERNATIVE APPROACHES …
C O M P L E M E N TA RY A N D A LT E R N AT I V E
AP P R O AC H E S TO PA I N M A N A G E M E N T
To protect yourself from potential risks involved when using
CAHC therapies, be sure to…

discuss all of your CAHC practices with your physician and other
health care providers

gather information from sources that look at both the pros and
cons of a therapy

consult publications and web sites that stem from governments,
recognized medical organizations, well-known scientific sources
or academic institutions

be cautious about any of the claims that you come across

seek out only fully competent and licensed practitioners
COMPLEMENTARY
|
ALTERNATIVE APPROACHES
ACKNOWLEDGEMENTS
The CHS would like to acknowledge those people who contributed
to the development of Roadmap for managing pain.
J E N N Y A I K E N H E A D , PT
Alberta Children’s Hospital, Calgary, AB
M A U R E E N B R O W N L O W , RSW
IWK Health Centre, Halifax, NS (retired)
C LARE C ECCHINI
National Program Manager, Canadian Hemophilia Society (retired)
N A N C Y D O W E R , MD
Walter Mackenzie Health Sciences Centre, Edmonton, AB
S O P H I A G O C A N , RN
Member, CHS National Program Committee, Ottawa, ON
A N N H A R R I N G T O N , RN
St. Michael’s Hospital, Toronto, ON (retired)
H E AT H E R J A R M A N
Pharmacist, St. Joseph’s Health Care, London, ON
D . W I L L I A M C . J O H N S T O N , BMedSC, MD, FRCS(C)
Orthopedic Surgeon and Site Medical Director of the University of Alberta Hospital, Edmonton, AB
P E T E R L E U N G , MD
Pain Management Service, St. Michael’s Hospital, Toronto, ON
D AV I D P A G E
National Executive Director, Canadian Hemophilia Society
K A R E N S T R I K E , PT
Hamilton Health Sciences Corporation, Hamilton, ON
P A M W I LT O N , RN
Past-President, Canadian Hemophilia Society
Roadmap for managing pain
Destination fitness
Bon Voyage! Travelling with a bleeding disorder
Charting your course
Home care: The road to independence
Navigating the emergency department
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