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It’s Not In Your Head— Or Is It?

It’s Not In Your Head— Or Is It?. Howard P. Levy, M.D., Ph.D. Assistant Professor, Johns Hopkins University August 10-11, 2012 Ehlers Danlos National Foundation 2012 National Learning Conference Cincinnati, OH. Disclosures. No financial disclosures or conflicts of interest.

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It’s Not In Your Head— Or Is It?

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  1. It’s Not In Your Head—Or Is It? Howard P. Levy, M.D., Ph.D. Assistant Professor, Johns Hopkins University August 10-11, 2012 Ehlers Danlos National Foundation 2012 National Learning Conference Cincinnati, OH

  2. Disclosures No financial disclosures or conflicts of interest

  3. Learning Objectives • Describe psychological factors that may exacerbate pain in patients with EDS • Discuss the role of psychological approaches in the management of pain

  4. It’s Not In Your Head • Dislocations/Subluxations • Acute & chronic muscle spasm • Neuropathic pain • Degenerative arthritis • and others…

  5. Yes It Is • Pain is a subjective experience • Mood and attitude • Goals and expectations • Fears • Avoidance, disability, isolation • and others…

  6. “And that helps me how?” • Avoid psychologic pain escalation • Learn psychologic pain control • Less pain • Less medication • Fewer side effects

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

  8. In Other Words… Psychological distress exacerbates pain Baeza-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?

  9. Emotional State Common in EDS: • Anxiety & Depression • Low self-confidence • Negative thinking • Hopeless/helpless • Desperation • Low self-efficacy Baeza-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) OrthodCraniofac Res. 7:178; Rombaut et al (2011) Arthritis Rheum. 63:1979

  10. 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

  11. Expectation Management(Intentions) • Missing a high bar • Exceeding a low bar • Effect on mood? On pain experience? HIGH BAR ACTUAL EXPERIENCE LOW BAR

  12. Expectation Management High Bar • No pain • No dislocations or subluxations • “Normal” activity tolerance Low Bar • Less pain • Fewer dislocation or subluxations • Improved activity tolerance

  13. 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

  14. 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

  15. Emotional State of Close Others • Fear • Disbelief • Anger • Distrust • Anxiety, depression, etc… • Partners, Parents, Sibs, Children, Extended Family, Friends, Providers…

  16. 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

  17. 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”

  18. 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)

  19. 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

  20. 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

  21. 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 participation Baeza-Velasco et al (2011) Rheumatol Int. 31:1131; Eccleston et al (2009) Cochrane Database Syst Rev. 2:CD007407

  22. 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

  23. 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 behaviors Baeza-Velasco et al (2011) Rheumatol Int. 31:1131; Eccleston et al (2009) Cochrane Database Syst Rev. 2:CD007407

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

  25. Antidepressant Medication • Reduce anxiety & depression • Lessens subjective pain experience • Directly treat pain • Especially neuropathic • Some improve restorative sleep • Less pain

  26. Example Branson et al (2011) Harv Rev Psychiatry 19:259 • Adolescent with EDS & recurrent joint pain • Poorly controlled episodesprogressive 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)

  27. Example Problems: • 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

  28. Example Solutions: • 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

  29. Mind Over Matter • Unchecked psychological distress can amplify pain • A disciplined mind can reduce pain

  30. Summary “90% of the game is half mental”-Yogi Berra

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