Ehlers Danlos Syndrome Physiotherapy Treatment

Introduction

Physical therapy/physiotherapy is key to managing Joint Hypermobility Syndrome/Hypermobile Ehlers-Danlos syndrome (JHS/hEDS). Physical therapists as well, however, may not be familiar with this condition’s diagnosis, common symptoms and best treatment options. This summary summarizes all the information available about physical therapy techniques that are supported by expert opinions and current high-quality research.

GJH (generalized joint hypermobility) can be measured by a series of nine tests known as the Beighton score. However, the precise cutoff to determine if a person is hypermobile or not has been debated for many decades. You can find the companion article that contains all the criteria necessary to diagnose JHS/hEDS. 2017 The JHS/hEDS presentations in children and adults are very similar. Joint instability and pain are the main problems. They can also occur due to overloading of musculoskeletal systems (muscles.tendons.ligaments, joints) or other abnormal movements patterns. Patients with JHS/hEDS are also more sensitive to painful stimuli. They feel greater pain than non-hypermobile individuals in response to the same input. It may be that their sensitive central nervous sistem processes pain differently.

Because exercise is often associated with increased pain, JHS/hEDS sufferers have reduced tolerance to exercise. This makes people less active and results in decreased strength, aerobic fitness, and overall activity. Floppy infant syndrome is another form of hypermobility. Children and adults suffering from JHS/hEDS are less coordinated and have lower body awareness. They also report falling more frequently than normal people. Children with reduced gross motor control may experience developmental delays, such as difficulty learning to walk later in life. Similarly, decreased fine motor control can result in difficulty with handwriting.

JHS/hEDS complaints do not include pain. Fatigue can also be a common problem, sometimes even more so than the pain. Depression, anxiety and panic disorders are all common psychological symptoms. Problems with the autonomic (“fight or flight”) nervous system can lead to low blood pressure or an excessively fast heart rate. Gastrointestinal problems include constipation or diarrhea, reflux, and abdominal pain. Urinary incontinence is common in both children and adults. It is easier for skin to stretch and to break down, but it can also be harder to heal.

Poor coordination, chronic pain, fatigue, and other systemic symptoms can all lead to reduced ability to accomplish daily tasks at home as well as school, work, or at the office. This, in turn, can result in significantly decreased quality of life, self-image, and social function for people with JHS/hEDS.

Abstract

Physiotherapy techniques are regularly prescribed in the hypermobile type Ehlers-Danlos syndrome (hEDS) and they are appreciated by the patients. This systematic review examined how different physiotherapy approaches affected children and adults living with hEDS. PubMed, SPORTDiscus, Cochrane Library, PEDro, Scopus, and Embase databases were analyzed from inception to April 2020. The characteristics of studies, patients, authors, sample size, Beighton score, Beighton score, non-pharmacological treatments (length, type, length of sessions, duration, intervention, etc.) were taken from inception to April 2020. From the 1045 retrieved references, 6 randomized controlled trial with a sample size ranging from 20 to 57 patients were included in the systematic review. The interventions were very diverse. The durations of the program were from 4 to 8 weeks. Pain or proprioception demonstrated significant improvements in the intervention group regardless of the type of intervention. An improvement in functional exercise capacity was also observed as a result of the inspiratory muscular training. Improved quality of daily life. Even though there are no randomized controlled studies, physiotherapy has been shown to improve proprioception as well as pain perception in patients suffering from hEDS.

Keywords: Ehlers-Danlos; nonpharmacological; physiotherapy.

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The Evidence-Based Rationale For Physical Therapy Treatment Of Children, Adolescents, And Adults Diagnosed With Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome

First published: 17 March 2017 https://doi.org/10.1002/ajmg.c.31545 Dr. Jane Simmonds is Chair of the International Ehlers Danlos Syndrome Physical Therapy Clinical Guidelines working group. Jane is Senior Teaching Fellow, Great Ormond Street Institute of Child Health University College London and Clinical Lead in the Hypermobility Unit of Hospital of St John and St Elizabeth. Jane is active in research and has 20+ years clinical experience treating this patient population. Three UK charity patient associations have Jane as their physiotherapy advisor. She has also published extensively, and she regularly speaks at international conferences about hypermobility, osteohealth and Ehlers Danlos Syndrome.

Prof. Raoul Engelbert, Professor of Physiotherapy (AMC), is a specialist in the transition of care for complex patients. He is currently the Director of Research in Center of Research ACHIEVE Faculty of Health University of Applied Sciences Amsterdam. He works extensively on the subject of Ehlers Danlos Syndrome, hypermobility, and other heritable diseases of connective tissue.

Birgit Juul Kristensen, associate professor, Research Unit of Musculoskeletal Function and Physiotherapy, University of Southern Denmark, and professor at Institute of Occupational Therapy, Physiotherapy and Radiography, Bergen University College, Norway. A prolific researcher, her publications in the area of hypermobility/musculoskeletal dysfunction are extensive.

Dr. Verity Pacey is a Senior Lecturer in the Department of Health Professions, Macquarie University, and Senior Physiotherapist at The Children’s Hospital at Westmead, with over 10 years clinical and research experience working with children and adolescents with symptomatic hypermobility. Verity Pacey’s research is focused on the evaluation, treatment and quality-of-life of adolescents and children with connective tissues disorders.

Inge de Wandele, a physiotherapist in the Center for Medical Genetics of Ghent University Hospital (Belgium), is Dr. Inge. Dysautonomia in EDS was her PhD topic. Current clinical research and clinical practice focus on adapting physiotherapy to patients with generalized joint hypermobility and heritable connective-tissue disorders.

Stephanie Sabo, a senior physical therapy assistant, practices outpatient developmental paediatrics treating children, adolescents and infants. The leader of Cincinnati Children’s Hospital Medical Center’s Joint Hypermobility Evidence Based Practice Team, she also serves as the chief. EDS/Juvenile Hypermobility Syndrome has been a part of her program development. In multiple studies relating to EDS/Hypermobility and intensive therapy, she is involved.

Nicoleta Woinarosky is a Health Resource Consultant for the Improving the Life of Children and Families Foundation (ILC), Nicoleta draws on her education (Master’s thesis on The Effects of Exercise/Physical Activity on Chronic Pain and Pain Related Mental Health Issues), volunteer work (teaching chronic pain self-management and physical education to seniors), and experience (living with EDS and chronic pain) to provide evidence-based information to health professionals and persons living with chronic pain syndromes including EDS. Although she recognizes the necessity of taking pain medication, Nicoleta is passionate about both the physical and psychological health benefits of exercising.

Sandy Smeenk, co-founder and executive director of the Improving the Lives of Children and Families with Chronic Pain Charitable Foundation (“ILC”) is a national charity that promotes efforts to reduce the pain burden through knowledge translation, education and systems changes, evidence-based awareness, and education. Her leadership has been substantiated to help influence Ministry of Health-mandated programs for rare diseases using Ehlers-Danlos syndrome (EDS), as an example of best care.

Mark Scheper works as a physiotherapist, and clinical movement researcher. Currently works as a Senior lecturer in physiotherapy at University of Applied sciences Amsterdam. Additionally, he’s a research associate to Academic Medical Center Amsterdam. His current research interests include chronic disability and chronicity in children who have chronic diseases. He also has a particular focus on connective tissue diseases.

As an Associate Professor, Dr. Leslie Russek teaches musculoskeletal therapy as well as research courses at the Clarkson University Doctor of Physical Therapy program. Her research on hypermobility has been ongoing for over 20 years. Dr. Leslie Russek treats hypermobility patients as well as fibromyalgia or headaches.

Abstract

[Purpose] This study was designed to provide evidence-based medicine with a comprehensive review of rehabilitation treatments for hypermobile Ehlers Danlos syndrome. [Methods] An extensive search was made in the following databases: PubMed. PEDro. Cochrane. EDS Base Index. TRIP. CINHAL. Time restrictions were not applied. PICO was used for the formulation of the clinical query. Hypermobile Ehlers-Danlos syndrome and physiotherapy were the main keywords of the research. [Results] 1,869 articles emerged from the primary search. Following the removal of duplicates, 1,709 papers were screened using title and abstracts. 1,698 papers were then excluded based on inclusion criteria. 11 papers received acceptance to final stages of review. These were evaluated in their full text versions. Only one study from a cohort met the review’s final steps selection criteria. One cohort study on the efficacy of an integrated physiotherapeutic and cognitive behavioural treatment was evaluated by means of Newcastle-Ottawa Quality Assessment score and resulted of poor evidence. [Conclusion] At the present time, there is no Evidence Based Medicine literature on hypermobile Helers-Danlos syndrome rehabilitation. To assess the effectiveness of physiotherapeutic methods, clinical studies must be done with high-quality evidence.

Medical Care

There is no satisfaction in the treatment.

In one case, oral vitamin A at 4 grams per day was found to be beneficial in patients with type VI. This treatment seemed to reduce scarring and increase bleeding times.

Rombaut, et. al. performed a cross sectional study on self-reported medication usage, surgery and physiotherapy among 79 patients suffering from hypermobility-type Ehlers Danlos (EDS) type III. They discovered that 73 of the patients (92.4%) were taking medication, 56 (79.9%), had undergone surgery and 41 (51.9%) were receiving physical therapy. [ ] All of the patients that took medication reported taking antidepressants and some also received analgesics. There was a lot of severe pain. People who were prescribed strong opiates had higher levels of complaints and more functional impairments than those who were given weaker medications.

What Physical Therapy Can Do for Ehlers Danlos

Physical therapy/physiotherapy is key to managing Joint Hypermobility Syndrome/Hypermobile Ehlers-Danlos syndrome (JHS/hEDS). Most clinicians (even physical therapists), are not aware of how this condition is diagnosed and the best ways to treat it.

Are There Any Exercises I Can Do with Ehlers Danlos Syndrome

Exercises for EDS: Tai Chi and Pilates can be beneficial to many patients. These exercises help strengthen the core. However, yoga is also beneficial. Yoga poses should be performed with care as it can cause damage to the joints. Swimming can be helpful as well for some EDS patients.Jan 16, 2020

Which Treatment Is Best for Your Eds

Ehlers Danlos syndrome treatment is first and foremost physical therapy. The physical therapist could also suggest braces that can help to avoid joint dislocations.

Is Physical Therapy a Good Choice for My Edshsd Symptoms

You can use TENS, heat and ice to manage your self-care. Problems, weakness of non-muscle tissues. Neuromuscular re-education for motor control training, muscle recruitment, balance, relaxation. Aerobic exercises to increase endurance, restore normal pain inhibition pathways.

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