It’s Not In Your Head—Or Is It?

Howard P. Levy, M.D., Ph.D.Assistant Professor,

Johns Hopkins UniversityAugust 10-11, 2012

Ehlers Danlos National Foundation2012 National Learning Conference

Cincinnati, OH

Disclosures

No financial disclosures or conflicts of interest

Learning Objectives

• Describe psychological factors that may exacerbate pain in patients with EDS

• Discuss the role of psychological approaches in the management of pain

It’s Not In Your Head

• Dislocations/Subluxations• Acute & chronic muscle spasm• Neuropathic pain• Degenerative arthritis• and others…

Yes It Is

• Pain is a subjective experience• Mood and attitude• Goals and expectations• Fears• Avoidance, disability, isolation• and others…

“And that helps me how?”

• Avoid psychologic pain escalation• Learn psychologic pain control

Less pain Less medication Fewer side effects

Pain Experience Modifiers• Emotional state• Thoughts• Beliefs• Intentions• Injuries to social relationships• Memories of past injuries• Emotional state of close othersKozlowska et al (2008) Harv Rev Psychiatry 16:136

In Other Words…

Psychological distress exacerbates painBaeza-Velasco et al (2011) Rheumatol Int. 31:1131;

Branson et al (2011) Harv Rev Psychiatry 19:259

• Recall a very happy time Minimal impact of dislocation/subluxation?

• Recall a very bad/sad time Effect of minimal trauma/injury?

Emotional StateCommon in EDS:• Anxiety & Depression• Low self-confidence• Negative thinking• Hopeless/helpless• Desperation• Low self-efficacyBaeza-Velasco et al (2011) Rheumatol Int. 31:1131; Branson et al (2011) Harv Rev Psychiatry 19:259; Castori et al(2010) Am J Med Genet A. 152A:556; Hagberg et al (2004) Orthod Craniofac Res. 7:178; Rombaut et al (2011) Arthritis Rheum. 63:1979

Thoughts & Beliefs

• “Pain will harm me”• Intense self-awareness/hypervigilance

“Waiting for the next shoe to drop” Amplifies pain experience Similar to cancer survivors?

• Assumption of normal vs. assumption of abnormal

Baeza-Velasco et al (2011) Rheumatol Int. 31:1131

Expectation Management(Intentions)

• Missing a high bar

• Exceeding a low bar

• Effect on mood? On pain experience?

ACTUAL EXPERIENCE

HIGH BAR

LOW BAR

Expectation Management

High Bar• No pain• No dislocations

or subluxations• “Normal” activity

tolerance

Low Bar• Less pain• Fewer dislocation

or subluxations• Improved activity

tolerance

Injuries to Social Relationships

• Disbelief by friends/relatives• Reduced ability to socialize• Resentment, distrust, hostility between

patient/family and health care team• Marginalization, isolation, despair…

Baeza-Velasco et al (2011) Rheumatol Int. 31:1131;

Branson et al (2011) Harv Rev Psychiatry 19:259

Memories of past injuries• Fear of pain and/or joint instability• Anticipation of negative experience• Avoidance behavior • Exacerbates dysfunction and disability

Baeza-Velasco et al (2011) Rheumatol Int. 31:1131;

Branson et al (2011) Harv Rev Psychiatry 19:259

Emotional State of Close Others

• Fear• Disbelief• Anger• Distrust• Anxiety, depression, etc…

• Partners, Parents, Sibs, Children, Extended Family, Friends, Providers…

How/Why?• Probably not completely understood• Pain & emotion co-localize in brain• Endorphins

Induced by emotion & exercise Modulate pain “Natural opioids”

• Centrally acting meds Opioids, sedatives, antidepressants

Complicating Factors

• PTSD• Resistance to accepting psych etiology

Response to prior misdiagnoses & accusations

“It’s not in my head—it’s real” Stigma, perceived weakness, “crazy”

Therapy

Build/repair relationship with healthcare providers. • Clinician must believe pain and other

symptoms are real (validate)• Patient must believe that there are

psych components in pain experience and management strategy (trust)

Therapy• Focus on chronic rather than acute pain

management• Establish reasonable expectations

(exceed a low bar)• Distraction • Hypnosis• Meditation…

Branson et al (2011) Harv Rev Psychiatry 19:259

Counseling• For depression, anxiety, PTSD…• For accepting, coping & living with pain,

dysfunction & disability• Consider thoughts/feelings of close

others Separate counseling Group counseling Work on patient’s response to them.

• Requires patient acceptance/willingness

Cognitive Behavioral Therapy

• Pain is influenced by cognition, affect and behavior

• Goal: manage pain & reduce negative consequences

• Focus on thoughts/beliefs re: pain & associated behaviors and avoidances

• Can improve pain, disability & mood• Requires active patient participationBaeza-Velasco et al (2011) Rheumatol Int. 31:1131;

Eccleston et al (2009) Cochrane Database Syst Rev. 2:CD007407

Unhelpful Thoughts• “Pain means damage; if doing something

hurts I should avoid it”• “…it’s hopeless, I should just accept that I’ll

end up in a wheelchair”• “I’ve got wear and tear, better not use my

joints or they’ll wear out even quicker”• “I need to rest more, if you feel tired it means

you’ve been doing too much”• “My pain is a sign of whether I am better, I

won’t be better until my pain has gone”Baeza-Velasco et al (2011) Rheumatol Int. 31:1131

Cognitive Behavioral Therapy

• Education (and insight)• Self-efficacy, locus of control• Recover function; overcome fears• Distraction• Relaxation (breathing exercises, muscle

relaxation, guided imagery)• Biofeedback• Reward positive behaviorsBaeza-Velasco et al (2011) Rheumatol Int. 31:1131;

Eccleston et al (2009) Cochrane Database Syst Rev. 2:CD007407

Counseling

• Work towards positive thinking Assumption of normal Control fear Self-efficacy

Antidepressant Medication

• Reduce anxiety & depression Lessens subjective pain experience

• Directly treat pain Especially neuropathic

• Some improve restorative sleep Less pain

ExampleBranson et al (2011) Harv Rev Psychiatry 19:259

• Adolescent with EDS & recurrent joint pain• Poorly controlled episodesprogressive

escalation in pain and decline in function• Meds didn’t help w/pain, but caused many SE• Hostile relationship w/healthcare teams--

abandoned, disengaged, blame (both directions)

ExampleProblems:

• Fear of impending subluxation much more common than actual dislocation

• Anxiety, anger & hopelessness• Pain behaviors out of proportion to actual pain• Always rated severity 10/10• Passivity• Prior care focused on acute rather than

chronic pain management

ExampleSolutions:

• Physical rehabilitation & bracing• Education to self-manage non-acute pain• Predictable daily schedule & expectations• Minimize meds, use predictable schedule• Distraction

Avoid directly asking about or discussing pain

• Repair medical relationships• Avoid ER/acute pain models• Eventual engagement in counseling

Mind Over Matter

• Unchecked psychological distress can amplify pain

• A disciplined mind can reduce pain

Summary

“90% of the game is half mental”

-Yogi Berra