This document summarizes a presentation about managing pain from juvenile arthritis (JA) beyond just pills and procedures. It discusses that while medications and surgeries can provide relief, they do not always eliminate pain and have limitations. Alternative strategies discussed include physical activity, nutrition, distraction techniques, relaxation methods, massage, and combining approaches. It also stresses the importance of regular school attendance and addressing any mood or anxiety issues. Finally, it discusses the role of parents in modeling flexible coping and supporting their child's development beyond just their medical condition.

1. Pain Management:
Beyond the Pills and Procedures
JA National Conference
July 21, 2012; St. Louis, MO
Dustin P. Wallace, PhD
Licensed Psychologist, Integrative Pain Management Clinic
Children’s Mercy Hospitals and Clinics
Assistant Professor of Pediatrics, School of Medicine
University of Missouri-Kansas City

2. Disclosures
• I am not a medical doctor!
• Please check with your doctor before starting
any new treatment, including the ones we
discuss today

3. Today’s plan
1. Many things influence pain from JA
2. Pills and procedures can lead to pain relief… but do
not always eliminate pain
3. Certain other strategies can be more effective and
have fewer side-effects
– Strategies for children, teens, and parents
4. Time for questions and discussion
– (and feel free to ask at any time!)

4. JA is a PAIN
• Broad set of autoimmune inflammatory
conditions
– Joints: JIA (oligo-, poly-, systemic)
– Tendon/ligament: Enthesitis (ankylosing
spondylitis, spondyloarthropathies, reactive)
– Psoriatic arthritis, dermatomyositis, scleroderma
lupus, HLAB, etc…
• Inflammation -> pain -> more inflammation!

5. Pain can be Disabling
• Impairment varies across
individuals
• Severity of symptoms does not fully
account for disability
• According to most studies, arthritis activity
accounts for less than 10% of the pain that kids
report

6. Think Bio-Psycho-
Socially!
• Pain comes from
physiological/medical
factors as well as
psychological, social,
behavioral, historical and
environmental
contributions

7. Also…
• Muscles guard,
become tight, and
may spasm
• Nerves get “practiced”
at pain signals
– Sending nerves
– Listening nerves
Pictures from: https://www.umm.edu/
imagepages/18125.htm &
http://www.jvillechiro.com/sciatica.htm

8. Pills & procedures are important
• Arthritis drugs: Anti-inflammatory & disease-
modifying
• Other pain medications
• Surgeries & other procedures (injections, soft-
tissue release, joint replacement, etc)
• Splints or orthotics

9. But these have limitations…
• Arthritis medications:
– if disease is improving, more may not help pain
– side effects can limit dose
• Pain medications:
– Hyperalgesia, side-effects
• Surgeries/procedures: invasive, side-effects
• Splints/orthotics: only correct certain issues

10. What other options do you have?
• Lots!!
– Address those overactive nerves
– Ease those painful muscles
– Take advantage of the pain gate

11. Pain is not
merely
sensory
excitation

12. What other options do you have?
• BIG categories:
– Physical activity
– Adequate water and nutrition
– Distraction (sensory and cognitive)
– “Biobehavioral” (usually relaxation-based)
– Combination approaches
• Parenting strategies

13. Physical Activity
• Why does it help? • What you can do
– Stimulates nerves – Moderation!
normally – Stretching
– Stretches and – Physical therapy
strengthens muscles
– Supports joints

14. Adequate water; good nutrition
• Why does it help? • What you can do
– Promotes healing – Aim for 64oz water
through normal body daily
processes – Variety of fresh foods
– May decrease including colorful
inflammation fruits and veggies
– Allows medications to – Reduce processed
work their best foods and sugar

15. Anti-inflammatory diet (as example)
** Not specifically
endorsing this diet, but
it has a number of
excellent elements.
Reminder: talk to your
doctor before making
any large changes.
Picture from:
http://www.drweil.com/
drw/u/ART02995/Dr-
Weil-Anti-Inflammatory-
Food-Pyramid.html

16. Distraction - sensory
• Why does it help? • What you can do
– Closes pain gate – Heat, cold, movement
– May promote in water
relaxation and healing – Petting animals
– Releases feel-good – Vibration
neurotransmitters – TENS
– Massage, self-massage

17. Distraction – sensory (massage)
• Example:
– Comfort Hold
• Simply laying warm, full hands on your child can be
very calming. Start with forehead and neck, and work
down. Hold each place for a few calm breaths.
– Massage:
• More than just a shoulder rub!

18. Distraction – sensory (massage)
• Face: sides of face,
forehead, nose, chin
• Stomach: hand over
hand, then clockwise
• Legs: hip to foot, foot,
then back up
• Arms: same as legs
• Back: down, side to
side, circular, neck, head
to toe

19. Distraction – sensory (massage)

20. Distraction – sensory (massage)

21. Distraction - cognitive
• Why does it help? • What you can do
– Helps close pain gate – TV, movies, video
– Adds fun activities games,
– Releases feel-good
neurotransmitters

22. Distraction - cognitive
• Why does it help? • What you can do
– Helps close pain gate – TV, movies, video
– Adds fun activities games,
– Releases feel-good – Non-video games,
neurotransmitters books
– Music, art, activities
– Friends

23. Biobehavioral strategies
• Why does it help? • What you can do
– Regulates autonomic – Relaxed breathing
nervous system – Progressive muscle
– Decreases overactive relaxation
pain nerves – Imagery/self-hypnosis
– Promotes healing – Biofeedback
– Meditation

24. Biobehavioral strategies
• Examples:
– Diaphragmatic breathing
– Quick muscle relaxation
– Imagery

25. Combine some of these?
• Yoga or Tai Chi
– Physical activity, strengthening, stretching,
relaxation, biobehavioral, distraction (sensory &
cognitive)
• Massage
– Relaxation, nerve stimulation, distraction (sensory)

26. Combine some of these?
• Acupuncture
– Biobehavioral, stimulates nerves
• School!
– Distraction (cognitive & sensory), physical
activity, social engagement feels good

27. Stay in school!
• Full medical homebound contraindicated for most
adolescents with chronic pain
– May do more harm than good
• Commitment to regular school attendance despite pain
is critical to prevent enduring disability
– Avoid pattern of withdrawal
• Students retained in one grade are 50% more likely to
drop out

28. Stay in school!
• Accommodations may help facilitate regular
attendance:
– Rest or stretch breaks
– Extra time for tests/assignments
– Modified PE curriculum
– Assignments/grading limited to essential learning
– Gradual reentry plan

29. Mood or anxiety may get in the way
• Chronic medical conditions can get kids
down
– Especially if painful, or limiting activities
• Might also worry about their pain, JA, or
what is going to happen
• Completely normal, but might get in the way
in addition to pain/JA
– If so, therapy can help

30. Mood or anxiety may get in the way
• Symptom reduction and acceptance:
– Education of patient and family
– Relaxation and possibly biofeedback
– Develop coping and self-efficacy
– Build motivation
– Skills training and goal setting
– Reducing avoidance, engaging with values
– Treating adjunctive problems such as anxiety and
depression
– Training parents in behavioral strategies

31. Mood or anxiety may get in the way
• Referral
– Ask your doctor if other patients have had good
experience with a certain psychologist or therapist
– Meet a couple different therapists before deciding
– Find someone experienced at working with kids who
have JA or other painful medical conditions
• Make sure they have a good understanding of
what you are coming for, and a plan to help you
reach your goals!

32. Parenting pain flexibly
• Many roles:
– Protector, advocate, encourager, coach, comforter,
limit setter, role model!
• At the same time…
– You have your own worries and struggles about
your child, and other aspects of your life!
– Responsible for helping your child’s adherence
– Social/family roles disrupted

33. Parenting pain flexibly
• Some challenges
– Parent distress may be modeled for kids
– Hard to balance being responsive and supportive,
while encouraging coping and not doing too much
• The good news
– Good coping modeled for kids
– When disease and pain management are in context
with other values, kids function better!

34. Parenting pain flexibly
• Role Model:
– Understand stress and burden are normal
– Have social support; get more help if you need it!
– Follow your own values, and encourage this in
your child(ren)
• Keep JA treatment and pain avoidance from becoming
sole family focus
– Support and celebrate your child’s development

35. Let’s talk!
• Questions, Comments, and Discussion!