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Its 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.

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Presentation on theme: "Its 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."— Presentation transcript:

1 Its 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 Its 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) Orthod Craniofac 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? ACTUAL EXPERIENCE HIGH BAR 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 Its not in my headits 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 patients 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 …its hopeless, I should just accept that Ill end up in a wheelchair Ive got wear and tear, better not use my joints or theyll wear out even quicker I need to rest more, if you feel tired it means youve been doing too much My pain is a sign of whether I am better, I wont 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 didnt 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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