Psychological & Psychiatric issues in EDS/HSD

Prof. Antonio Bulbena

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Universitat Autónoma Barcelona

INAD Parc Salut Mar. Barcelona

Psychiatry and Psychology

Psychiatry is a branch of Medicine

Psychology is the study of Human Behaviour

The Mistake, the Facts and some Solution

Mistake

Facts

Solution

The Mistake

• Misattribution to mental causality
• Subjective Symptoms vs Objective Signs
• EDS Surveys

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1 - The Mistake

Subjective vs Objective

Subjective

Objective

Ruback TJ. The Medical Interview: Communication Skills.

What a patient feels, describes indirectly with words

(ex. pain, anxiety)

Physiologic quantities observed directly

(ex. bleeding, blood pressure)

In the simplest form,

• Symptoms are the experiences of the patient
• Signs are observations of the doctor

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1 - The Mistake

(SYMPTOMS)

(SIGNS)

• When a patient approaches a physician with a somatic complaint, no clear organic cause can be found between 20% and 84% of the time.
• Somatization: experiencing and complaining about physical symptoms for which there are no clear organic findings.
• Commonest among these functional somatic symptoms are palpitations, chest pain, headache, fatigue, and dizziness.

SUBJECTIVITY: the borderland between medicine and psychiatry

1 - The Mistake

Q31: What symptoms are you experiencing consistently?

63

SYMPTOM

PAIN

MUSCULOSKELETAL (e.g. Joint subluxations or dislocations, instability)

Central NERVOUS S. (e.g. Dysautonomia, POTs, headaches, instability of neck)

PROFOUND FATIGUE

SLEEP DYSFUNCTION

DIGESTIVE SYSTEM (e.g. GERD, gastropresis, IBS, vomiting, etc, )

FRAGILE SKIN , Slow healing, EASY BRUISING or SCARRING

LIGHTHEADEDNESS or FAINTING upon STANDING

CARDIAC / ANS (e.g. Problems with heart rate, blood pressure, etc)

NAUSEA

ALLERGIC REACTIONS

BREATHING/ RESPIRATORY PROBLEMS

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Percentage

95.38%

90.86%

80.19%

78.93%

77.61%

75.88%

67.16%

62.01%

57.96%

53.81%

39.15%

35.42%

Total Responses 1903

1 - The Mistake

Q50: Has a present or a past doctor made any of these statements about your condition?

“It is all in your head” (66.7%)

“There is nothing wrong with you” (67.3%)

“You shouldn’t be in that much pain” (62.5%)

“You should be happy we can’t find anything wrong” (49.1%)

“You worry too much” (59.2%)

“You are looking for attention” (23.4%)

“You are hypochondriac” (29.8%)

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1 - The Mistake

Total responses : 2544

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Number of Countries: 26

Q18: What statements reflect your EXPERIENCE being diagnosed with EDS?

1 - The Mistake

The Mistake

EDS: Premature attribution to psychological psychiatric causes (Hamonet, 2017)

Gala...

The Mistake, the Facts and some Solution

Facts

2 - The Facts

Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS)

Of the respondents 74.8% scored high on ANXIETY and 22.4% scored high on DEPRESSION on the HADS.

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Conclusions:

Higher levels of ANXIETY and DEPRESSION were detected in individuals with EDS compared to controls.

The importance to explore the factors behind these results and what initiatives can be taken to alleviate the situation for this group is emphasized.

2 - The Facts

Review with meta-analysis 2014

2 - The Facts

Joint Hypermobility

and Anxiety

2 - The Facts

First study ED JHS HT and Anxiety�Hospital del Mar Barcelona - 1988

Outpatient Clinic

• Psychiatry
• Rheumatology

694 THE LANCET, SEPTEMBER 17, 1988

JOINT HYPERMOBILITY SYNDROME and ANXIETY DISORDERS

Dr Bulbena Dr Duró

1988, the first empirical study to evaluate the association between both phenomena: A control-case study (112 rheumatology outpatients with JHS and 50 controls).

70% of JHS patients showed anxiety disorders vs. 22% in the control group.

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Subsequent research has confirmed this result (ex. Martin-Santos et al. 1988; Gülsün et al. 2006; Garcia-Campayo et al. 2010)

2 - The Facts

Overlap Anxiety Hypermobility Syndrome

2 - The Facts

% Joint Laxity (Beighton ≥ 4) in Panic/Agoraphobia

O.R. = 16.87 (I.C. 95%: 8.84-32.18)

Case-Control in Outpatient Psychiatry

American J. Psychiatry 1998

2 - The Facts

2011

Relative Risk

22.3

Incidence in exposed 41.4 %

General population sample (18 to 22 years old) were followed up 15 years.

2 - The Facts

Summary of the evidence �Anxiety Disorders and the Joint Hypermobility S.

Joint Hypermobility Syndrome in Anxiety Disorders

2 - The Facts

Psychopathology in Joint Hypermobility Syndrome Ehlers Danlos III

Disorder Published evidence

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• Anxiety Dis. ++++++
• Depression +++
• Personality Dis. +
• Addictions +
• Psychosis +
• Eating Dis. ++
• Neuro-develop. Dis. ++
• Cognitive Impair. +/-

2 - The Facts

2017

2017

2 - The Facts

Conclusion: High symptoms of hypermobility are associated with higher scores in anxiety symptoms in children from the general population.

Children with frequent symptoms of hypermobility may benefit from screening for anxiety symptoms because a subset of them are experiencing clinical elevations and may need comprehensive physical and psychological treatment.

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2 - The Facts

2 - The Facts

2 - The Facts

2 - The Truth

2 - The Facts

“First evidence for an association between joint hypermobility and excitability in a non-human species (the domestic dog)"

This week!

3 - Some Solution

Jonathan Bowen,

Jaume Fatjo,

James Serpell,

Andrea Bulbena-Cabré,

Eldin Leighton, and

Antoni Bulbena

The Mistake, the Truth and Some Solution

Mistake

Truth

Solution

3 - Some Solution

Please: �Avoid (comfortable) Simplicity

3 - Some Solution

Conclusion: Joint hypermobility is associated with high anxiety scores in children of the general population.

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Children with hypermobility may benefit from a screening of anxiety symptoms because a subset of them experience significant elevations.

Therefore they could benefit from psychological and somatic treatment.

3 - Some Solution

3 - Some Solution

Neuroconnective Phenotype �towards a new Neuropsychosomatics

Psychopathology

Anxiety D. Hypermobility S.

Somatic conditions

Behavioral

strategies

Somato-Sensory symptoms

Somatic Signs and Symptoms

3 - Some Solution

• Irritable Bowel Syndrome
• Dysfunctional Esophagus
• Multiple chemical sensitivity
• POTS
• Dizziness or unsteadiness (vestibular pattern)
• Chronic fatigue
• Fibromyalgia
• Migraine
• Glossodynia, Vulvodynia,
• Temporo-mandibular dysfunction
• Hypothyroidism
• Asthma
• Intolerances of food and drug

1 - Somatic Conditions

3 - Some Solution

• Asthenic/Ectomorph somatotype
• Dark or “blue” sclera
• Easy bruising (especially in women)
• Hypertrophic scars or keloids.
• Dysautonomia
• Eczemas
• Esophageal dyskinesia
• Abdominal bloating
• Dyspareunia
• Sprains and dislocations
• Visceroptosis
• Prolapses
• Allergies
• Mast Cell Activation

2 - Somatic signs and symptoms

3 - Some Solution

• Increased olfactory sensitivity
• Sensitivity to some visual stimuli
• Sighing
• Dyspnea
• Dizziness (unsteadiness)
• Dysphagia or choking
• Palpitations
• Urologic and vaginal pains (dynias)
• Joint pain (especially cervical or lumbar)
• Intolerances or enhanced sensitivities to
• weather
• drugs (particularly psychotropic)
• chemicals
• heat or cold.

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3 - Somatosensory symptoms

3 - Some Solution

Olfaction – Anxiety – EDS

2018

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2011-2013

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2015-2017

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3 - Some Solution

• Increased exteroception (eg. meteoro-sensibility)
• Increased interoception (visceral-body)
• Reduced and distorted proprioception
• Depersonalization
• High Loss Grief sensitivity
• Anticipatory anxiety (Worry)
• High positive confrontation (high ability to deal with real acute problems)
• Fear of being silly or fear of impotence
• Fear of rejection, abandonment
• Depressive Disorders
• Agoraphobia, Panic, Social Phobia, Specific Phobias (Anxiety disorders)
• Other fears and phobias including fear of medication (side effects or addiction) and fear of illness or hypochondriasis.
• Denial and Projection

4 - Psychopathology

3 - Some Solution

5 - Behavioral areas in the exercise of adaptation

Flight

Fight

Avoidant

Invasive

Isolated

Dependent

Over

Control

Loss of

Control

OneSelf

Others

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Patterns of defensive mechanisms often identifiable at both extremes of a continuous axis.

3 - Some Solution

Mechanisms between el ED JHS Type III Anxiety and « Sensitivity »

Ehlers Danlos III Joint Hyperlaxity

SENSITIVITY

ANXIETY FEAR

3 - Some Solution

?

3 - Some Solution

3 - Some Solution

3 - Some Solution

Treatment for anxiety: Facts

• Less than 25% of people suffering from anxiety disorders receive formal treatment�
• More than 60% take complementary treatments�
• Frequent "phobia" to take medication�
• Difficult maintenance (chronic disorder)

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• Great value of understanding mechanisms

3 - Some Solution

Untreated Anxiety

• Problems at work or school
• Social isolation
• Depression
• Premature death from other medical conditions
• Physical pain or illness
• Alcohol or substance abuse
• Social anxiety, panic or phobias
• Conflicts with family or personal relationships

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Anxiety is also linked to other health conditions such as GI disorders. All conditions described in SEDS, have been found present in Anxiety Disorders

Untreated anxiety can lead to emotional, behavioral and health problems that affect every area of life.

3 - Some Solution

Psychotherapy

• Cognitive Behavioral Therapy (CBT)
• Psychoanalysis, Psychotherapy
• Eye Movement Desensitization and Reprocessing (EMDR)
• Other:

• Humanistic Therapy,
• Existential Therapy,
• Somatic Experiencing,
• Systemic Therapy,
• Hypnotherapy,
• Family and Marital Therapy,
• Gestalt Therapy,
• Play Therapy (for children),
• Pastoral Counseling,
• Goal Oriented Therapy,
• Dialectical Behavior Therapy (form of CBT),
• Dance Therapy,
• Movement Therapy
• Art Therapy,
• Biofeedback

3 - Some Solution

Anxiety Treatments 2011

3 - Some Solution

Neuroconnective Phenotype �towards a new Neuropsychosomatics

Psychopathology

Anxiety D. Hypermobility S.

Somatic conditions

Behavioral

strategies

Somato-Sensory symptoms

Somatic Signs and Symptoms

3 - Some Solution

One Solution

THANK YOU for your ATTENTION !!!!!

Drawing Hands�Maurits Cornelis Escher, (1898-1972)

Subjective Symptoms

/Syndromes

• Lower back pain

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• Pelvic pain, PMS

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• Tinnitus

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• Dizziness, headache

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• Atypical chest pain

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• Hyperventilation, dyspnea

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• TMJ syndrome

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• Fibromyalgia

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• Chronic Fatigue Syndrome

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• Irritable bowel syndrome, Pain

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• MUS Hypoglycemia

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• Multiple chemical sensitivity

• Orthopedics

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• Ob/Gyn

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• ENT

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• Neurology

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• Cardiology

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• Pulmonary

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• Dentistry

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• Rheumatology

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• Internal Medicine

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• Gastroenterology

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• Endocrinology

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• Occupational Medicine

Kroenke & Price 1993, Nimnuan and Wessely, 2000

Don’t them remind you …EDS?

1 - The Mistake