Materiały źródłowe

• #1 Hypermobile joints Information | Mount Sinai – New York

  https://www.mountsinai.org/health-library/symptoms/hypermobile-joints

  Hypermobile joints are joints that move beyond the normal range with little effort. Joints most commonly affected are the elbows, wrists, fingers, and knees. […] There is no specific care for this condition. People with hypermobile joints have an increased risk for joint dislocation and other problems. […] Extra care may be needed to protect the joints. Ask your health care provider for recommendations.

• #2 Joint Hypermobility Syndrome Causes, Symptoms, Test, Treatment

  https://www.medicinenet.com/hypermobility_syndrome/article.htm

  Joint hypermobility syndrome is a condition that features joints that move beyond the normal range expected for a particular joint. Joint hypermobility syndrome is considered a benign condition. It is estimated that 10%-15% of normal children have hypermobile joints or joints that can move beyond the normal range of motion. Hypermobile joints are sometimes referred to as „loose joints,” and those affected are referred to as being „double jointed.” […] Symptoms of joint hypermobility syndrome include pain in the knees, fingers, hips, and elbows. There is a higher incidence of joint dislocation and sprains of involved joints. Scoliosis (curvature of the spine) occurs more frequently in people with hypermobile joints and can lead to back pain. Joint hypermobility tends to decrease with aging as we become naturally less flexible.

• #3 Joint Hypermobility Syndrome | Lurie Children’s

  https://www.luriechildrens.org/en/specialties-conditions/joint-hypermobility-syndrome/

  Joint hypermobility is used to describe joints that easily move beyond the normal range. […] People with hypermobility syndrome have loose ligaments. This results in joints that are more mobile and less stable than normal. As a result, people with hypermobility syndrome are more prone to joint dislocations. They are also more prone to joint pain, as repeatedly moving a joint beyond its normal range puts stress on the joint and surrounding tissues. […] Treatment of joint hypermobility syndrome is focused on joint protection. Strengthening the muscles around the joints improves joint stability and reduces pain. Despite loose ligaments, many people with joint hypermobility will tightness in large muscle-tendon groups. Since tight muscles can contribute to joint and tendon pain, stretching to improve muscle flexibility is often recommended. Pain medications can be used to treat the pain symptoms, but do not change the stability of the joint or tension on the muscles and tendons, so they only provide temporary relief. In some cases, supportive devices such as shoe inserts or knee braces may be helpful.

• #4 Advice for Joint Hypermobility in Children | NHS GGC

  https://www.nhsggc.org.uk/kids/resources/health-a-z-resources/advice-for-joint-hypermobility-in-children/

  Most children are very bendy compared to older people, as children get older their joints become less bendy. Hypermobility refers to an increased range of movement in multiple joints, for their age. […] Hypermobility frequently runs in families. Most young people do not know they are hypermobile, you cannot catch hypermobility it’s just how you are made. It affects girls more than boys (Beighton 1973). […] Most children with hypermobile joints do not need support with everyday activities. At the other end of the scale are people who experience pain and their joints may dislocate. […] Families should be aware that its main risk comes from preventing children to live normal lives. Children should be encouraged to maintain a normal level of activity, including playing any sports they are interested in. Keeping active and strong is important and helps reduce joint pain as fitness and balance improve over time.

• #5 Joint hypermobility | Causes, symptoms, treatments

  https://versusarthritis.org/about-arthritis/conditions/joint-hypermobility/

  Hypermobility can cause a range of symptoms that often affect many parts of the body. These symptoms can range from mild to severe and can have a great impact on someone’s life: […] Many people with a hypermobility syndrome can live a full and active life but it is important to follow healthcare professionals advice. […] Regular exercise is important as part of a healthy lifestyle, and there’s no reason why people with hypermobile joints shouldn’t exercise. However, if you find that certain sports or exercises involve movements that cause pain then you should stop these activities until it’s clear why there is pain. […] The main treatment for HSD or hEDS is improving muscle strength and fitness, so your joints are better protected. […] You may be referred to a physiotherapist, occupational therapist or podiatrist for specialist advice.

• #6 Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care – PubMed

  https://pubmed.ncbi.nlm.nih.gov/25911504/

  Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with 'everyday’ non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. […] Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential.

• #7 Joint Hypermobility Syndrome Causes, Symptoms, Test, Treatment

  https://www.medicinenet.com/hypermobility_syndrome/article.htm

  Joint hypermobility syndrome is diagnosed by examining affected joints and noting that they move easily beyond the normal range expected. For example, the middle of the fingers may bend backward more than usual. There is no blood test for hypermobility syndrome. […] Doctors who treat hypermobility syndrome include general-medicine doctors, family medicine doctors, and internists, as well as rheumatologists, orthopedists, and physical-medicine physicians. […] Often, joint hypermobility causes no symptoms and requires no treatment. Many individuals with joint hypermobility syndrome improve in adulthood. Treatments are customized for each individual based on their particular manifestations. […] Joint pain can be relieved by medications for pain or inflammation. Proper physical fitness exercises should be designed to avoid injury to the joints. Home remedies include home exercises and acetaminophen (Tylenol), as needed. Sometimes physical therapy can help with the rehabilitation of injured areas and can be especially helpful to prevent re-injury.

• #8 Hypermobility: Causes, Treatment

  https://www.gillettechildrens.org/conditions-care/hypermobility

  Hypermobility means a persons joints move beyond a normal range of motion. Children who have a hypermobility disorder might experience it in one or more joints, and might say they have loose joints or describe themselves as double jointed. […] This condition is called benign joint hypermobility syndrome, or simply joint hypermobility syndrome. Though hypermobility itself is not considered a disability, in severe cases, hypermobility may cause pain or injury that could lead to longer-term functional issues. […] Joint hypermobility is usually hereditary, and occurs more frequently in children than in adults. […] Gillette Childrens specialists use the Beighton scale to determine if your child has joint hypermobility. […] When you work with specialists at Gillette, you’ll get a hypermobility treatment plan customized for your child.

• #9 What is HSD? – The Ehlers Danlos Society

  https://www.ehlers-danlos.com/what-is-hsd/

  The hypermobility spectrum disorders can cause a variety of symptoms in different areas of the body. Therefore, people with HSD may require multiple providers in different specialties to manage their care. […] Each person should work with their care team to develop a care plan that meets their individual needs. […] HSD is diagnosed by medical history and physical examination. In the process, clinicians need to rule out other conditions that can cause the same symptoms. […] To be diagnosed with HSD, there should be evidence that the joint hypermobility is causing problems and it is not just an asymptomatic feature. […] These problems include: Joint subluxations and/or dislocations, Joint pain and loss of joint function, Joint damage, such as cartilage tear, Early joint degeneration (which may, over time, lead to significant wear and tear called osteoarthritis), Soft tissue (ligament/tendon) damage and injury, Recurrent, persistent, and/or chronic pain, Poor proprioception (reduced awareness of bodys position/movement). […] It is fundamentally important that clinicians worldwide know that there are management strategies for both HSD and EDS that can improve the lives of people living with these conditions.

• #10 Ehlers-Danlos syndromes | Nursing in Practice

  https://www.nursinginpractice.com/clinical/womens-health/ehlers-danlos-syndromes/

  The conditions falling under the umbrella term of Ehlers-Danlos Syndrome are life-long conditions and patients may need care and assistance from community nursing teams at various stages through life. For patients with significant mobility issues, the input of the community team is essential to ensure that they can reach their full potential and live as independently as possible. Patients with bowel and bladder issues may similarly need support to manage this sensitive aspect of their condition. Quick recognition of signs regarding delayed early development, like late walking, could be the first step towards making a diagnosis in this group of conditions. […] For hypermobile EDS advice on exercise and pacing can bring about a significant improvement in quality of life. […] Hypermobile EDS patients are proven to have a better medical outcome when the diagnosis is known.

• #11 Nursing care for patients with the Ehlers-Danlos and other hypermobility syndromes | Veenhuizen | Journal of Nursing Education and Practice

  https://www.sciedu.ca/journal/index.php/jnep/article/view/2947

  Ehlers-Danlos syndrome is a rare genetic disorder, with mainly three symptoms: hypermobility, fragile skin and fragile veins. […] Starting point are the health patterns of Gordon in combination with peri-operative situations. […] As a nurse it is important to be aware of the strongly varying needs of patients both during the day and night and their pain and fatigues, which all patients report, and report as being as very troublesome. […] It is essential that nurses, during hospitalization, should bear in mind that patients may have to cope with hypermobility of the joints, fragile skin, possible dysfunctional vasoconstriction and the often present generalized autonomous disregulation. […] Because the pattern of complaints varies markedly from patient to patient, good communication between nurse and patient is very important.

• #12

  https://www.nursingcenter.com/cearticle?an=00587875-202304000-00001&Journal_ID=3402523&Issue_ID=6649307

  1. Pain is one of the most common and debilitating symptoms of Ehlers-Danlos syndrome (EDS), a group of genetic connective tissue disorders that cause generalized joint hypermobility and tissue fragility. […] Physical therapy (PT) and/or occupational therapy (OT) must be a priority in rehabilitation for SJH. Various aspects of SJH, such as extreme (dangerous) range of motion, joint instability, dizziness, and exercise intolerance, require a unique approach to PT, focusing on stability throughout the entire body. […] 2. Patient education is a useful tool to reinforce a treatment plan, including knowledge of the neuroscience of pain, placebo versus nocebo effect, catastrophization, kinesiophobia, and environmental modifications. […] Educational resources for patients can be found in the form of books, audiobooks, podcasts, webinars, and classes, to find the best fit for each patient’s learning style. Patient education in chronic pain and illness is especially important to provide coping strategies, help self-manage symptoms, prevent flare-ups, and empower patients to take control of their health.

• #13 Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders | AAFP

  https://www.aafp.org/pubs/afp/issues/2021/0415/p481-s1.html

  There is no cure, but often you can control your symptoms by making healthy choices. Taking good care of your body may prevent joint injuries and arthritis in the future. […] Your family doctor will manage your care. It may involve a team of people like physical therapists, occupational therapists, counselors, and other kinds of doctors. […] The more you understand your condition, the more you can help yourself live a better life. You can also help the people who care for you to help you even more.

• #14 Joint hypermobility syndrome

  https://www.nhs.uk/conditions/joint-hypermobility-syndrome/

  Joint hypermobility syndrome is when you have very flexible joints (you may think of yourself as being double-jointed). […] The main treatment is improving muscle strength and fitness so your joints are better protected. […] A GP may refer you to a physiotherapist, occupational therapist or podiatrist for specialist advice. […] If you have joint hypermobility syndrome, there are things you can do to improve joint and muscle strength and reduce strain. […] gentle exercise start with low-impact exercise like swimming or cycling if you’ve not been active before (not doing any exercise can make your symptoms worse) […] maintain a healthy weight […] wear supportive shoes […] wear special insoles (orthotics) in your shoes if a podiatrist has recommended them. […] do not overextend your joints just because you can […] do not do repetitive exercises or activities take regular breaks (called pacing).

• #15 Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4445137/

  Participants accepted that treatment should aim to manage symptoms rather than provide a cure: its all about them helping you to manage your pain, rather than cure it. Participants recognized the importance of self-care activities such as appropriate exercise, once a diagnosis had been received and a clear understanding of JHS had been developed. Participants also recognised that activity pacing is really key to managing JHS symptoms. […] Individuals with JHS experience diverse, fluctuating and often debilitating symptoms and diagnosis is often slow. Without a correct diagnosis, treatment may exacerbate symptoms. Increased awareness of JHS in primary care could help improve the diagnosis and referral processes. Following diagnosis, access to JHS-trained health professionals could help patients to effectively manage their condition over a life course and receive psychological support when needed.

• #15 Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4445137/

  Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with everyday non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. […] Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.

• #15 Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care

  https://pmc.ncbi.nlm.nih.gov/articles/PMC4445137/

  Primary-care practitioners are usually the patients first point of contact on entering the health-care system. They can do much to assist individuals to effectively self-manage their condition and refer patients for appropriate secondary care such as physiotherapy, although the effectiveness of physiotherapy has yet to be established due to the lack of high-quality research in this area. […] Education for health professionals was a key issue for participants, to facilitate timely diagnosis of, and referral for, JHS. Thus, education for health professionals was a prerequisite for diagnosis, and diagnosis was a prerequisite for participants to access education. Participants recognized that individuals with JHS also need education, in order to find ways to self-manage their condition and to understand and engage with prescribed treatments.

• #16 Joint Hypermobility Syndrome: Symptoms, Causes, Diagnosis & Treatments

  https://my.clevelandclinic.org/health/diseases/21763-joint-hypermobility-syndrome

  Joint hypermobility syndrome is a genetic condition that involves extreme flexibility along with pain and other symptoms. […] While theres no cure, symptoms can be managed by keeping your muscles strong and taking medication. […] Treatment involves protecting your joints and managing your pain. You can protect your joints by strengthening your muscles through exercise. Other recommendations include: Maintain good posture. Stand with your knees slightly bent and avoid extreme ranges of motion. Wear shoes with good arch support. Use orthotics to help correct flat feet. See a physical therapist to help reduce pain, increase muscle strength and improve your posture and balance. […] It’s important to work with your healthcare provider on ways to protect your joints and manage your pain. […] If you have joint hypermobility syndrome, it’s important to maintain a healthy lifestyle and protect your joints. You can improve joint and muscle strength by: Getting regular exercise. Taking regular breaks while exercising. Eating a healthy diet. Wearing supportive shoes. Easing joint pain and stiffness with warm baths. Not overextending your joints on purpose. […] Talk to your healthcare provider if you have severe symptoms. They can help you manage this condition.

• #17

  https://www.nursingcenter.com/cearticle?an=00587875-202304000-00001&Journal_ID=3402523&Issue_ID=6649307

  9. When given the opportunity to treat patients with SJH, proper precautions should be considered in parallel with treatment. […] Knowledge of SJH and related conditions is paramount for surgeons and anesthesiologists caring for these complex patients. […] 10. SJH is a frequently overlooked cause of pain in patients seeking care and pain management. […] Pain management in patients with SJH requires a multimodal approach, such as the MENS PMMS method, to maintain lower pain levels, promote function, and facilitate abundant lives.

• #18

  https://www.nursingcenter.com/cearticle?an=00587875-202304000-00001&Journal_ID=3402523&Issue_ID=6649307

  3. Nutrition plays a key role in managing chronic illness, such that a poorly managed diet can contribute to musculoskeletal pain. […] When treating MCAD, removing gluten, lactose, preservatives, additives, artificial sweetener, and alcohol (especially red wine, beer, and champagne) may minimize reactions. […] 4. Insufficient sleep plays a unique bidirectional role as both a cause and effect of pain, implying the significance in the role of quality sleep for those with SJH. […] Sleep apnea is a known comorbidity of hypermobile-type EDS (hEDS), causing poor sleep and daytime fatigue. […] 5. When treating patients with chronic pain and disability, a psychosocial approach can be effective for versatile treatment. […] Different therapy methods can be beneficial in addressing the psychosocial factors of chronic illness.

• #19 Joint Hypermobility (adult) — Arthritis Australia

  https://arthritisaustralia.com.au/types-of-arthritis/hypermobility-adult/

  Joint hypermobility usually causes no symptoms and requires no treatment. […] The treatment of joint hypermobility involves treating the symptoms, including pain and joint instability. […] Joint instability can be improved with intensive physiotherapy (exercises) aimed at strengthening the muscles surrounding the affected joint. […] If there is associated depression or anxiety these should be addressed. […] If present, cardiovascular and gastrointestinal symptoms should be investigated and managed by a specialist. […] While there is no cure for joint hypermobility, with the help of a multidisciplinary healthcare team symptoms can be managed.

• #20 Joint hypermobility | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions-that-can-affect-multiple-parts-of-the-body/joint-hypermobility/

  Joint hypermobility means that some or all of a persons joints have an unusually large range of movement. […] You may need treatment and support if you have hEDS or HSD. These can cause a wide range of symptoms, including joint pain and digestive problems. […] If youre experiencing symptoms, there are some things you can do yourself that can help. These include: eating a healthy diet and maintaining a healthy weight which can help improve your joint strength, reducing the strain on them. […] Physiotherapy can help people with hypermobile joints in many ways. For example, it may help to reduce pain, improve muscle strength and fitness, improve posture, improve your sense of your bodys position and movement (proprioception), correct the movement of individual joints. […] Occupational therapy aims to help you overcome difficulties in your everyday life caused by having hEDS or HSD.

• #20 Joint hypermobility | NHS inform

  https://www.nhsinform.scot/illnesses-and-conditions/muscle-bone-and-joints/conditions-that-can-affect-multiple-parts-of-the-body/joint-hypermobility/

  Medication can be used to manage the pain associated with hEDS or HSD. Painkillers available over the counter from pharmacies, like paracetamol, can sometimes help. Your GP can also prescribe a medicine that contains both paracetamol and codeine, which is a stronger type of painkiller. […] If painkillers are not helping to reduce your pain, you may benefit from being referred to a pain specialist at a pain clinic. Staff at the clinic will be able to provide further advice and treatment.

• #21 Joint hypermobility factsheet | The Sydney Children’s Hospitals Network

  https://www.schn.health.nsw.gov.au/joint-hypermobility-factsheet

  Speak to your childs doctor or physiotherapist about the types of sport, exercise and activity that will be best for their joint hypermobility. […] Your childs treatment team will work together to help them manage chronic, complex pain from joint hypermobility. […] Some children with joint hypermobility may have issues with fine motor skills development, like handwriting and self-care skills. […] A psychologist can help your child to manage mental health and wellbeing through therapies, education and strengthening emotional resilience.

• #21 Joint hypermobility factsheet | The Sydney Children’s Hospitals Network

  https://www.schn.health.nsw.gov.au/joint-hypermobility-factsheet

  Joint hypermobility is a condition where some joints in a childs body can move further than normal outside of the average range of movement. […] In some children, joint hypermobility can cause issues like weakness and instability of the joints. […] Children with joint hypermobility need to protect their muscles and joints from injury. They can do this by being supported in safe exercise and having good nutrition. […] Your childs treatment team may include: physiotherapists to support exercise and strengthening, dieticians to support nutrition and digestive issues, occupational therapists to support fine motor and self-care skills that can be impacted by muscle issues, psychologists to support mental health, gastroenterologists to manage related issues with the digestive system. […] Physical activity is important for the health and wellbeing of all children, especially those with joint hypermobility.

• #22 Joint hypermobility – information for children and young people | CUH

  https://www.cuh.nhs.uk/patient-information/joint-hypermobility-information-for-children-and-young-people/

  It is essential to increase the muscle strength around the affected joints, to provide additional support and improve the joint stability. […] Low impact exercise, such as swimming and cycling, will help maintain muscle strength, physical fitness and well-being. Normal activities such as PE, playtime and dance should be continued and encouraged. […] If the child or young person reports pain after activity it is important not to give up and pacing will help. This involves planning your activities carefully throughout the day to keep the intensity low and having short rest breaks where required. […] Pacing of physical activities is needed to ensure a persons tolerance and ability is gradually increased according to their own capabilities. […] Children and young people may suffer aches and pains and these are usually a result of the muscles being used (to stabilise the joints) and fatigue, rather than the result of injury or damage.

• #22 Joint hypermobility – information for children and young people | CUH

  https://www.cuh.nhs.uk/patient-information/joint-hypermobility-information-for-children-and-young-people/

  Warm baths or a hot water bottle (wrapped in a towel) may help, particularly in the evenings and after activity. […] Supportive footwear is recommended. […] Most children and young peoples pain and difficulties will improve with the measures listed above and for the majority hypermobility is unlikely to cause problems in the future providing they remain fit and strong. […] Some children benefit from a single assessment with a physiotherapist and / or occupational therapist to provide a standard home exercise programme which will target their individual challenges or alignment variations.

• #23 Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders | AAFP

  https://www.aafp.org/pubs/afp/issues/2021/0415/p481.html

  Educating patients about lifestyle modifications, management options, and expectations is one of the most important interventions. […] The complexity of hypermobile EDS/hypermobility spectrum disorders and the lack of familiarity physicians may have can lead them to ignore or be skeptical of patients’ experiences with their EDS conditions, possibly having lasting negative impacts on patients. […] More research is needed, but three small studies of a multidisciplinary approach that includes physical, occupational, and cognitive behavior therapy have shown reduced anxiety, depression, catastrophizing, and kinesiophobia (fear of pain due to movement), with improved physical function and self-efficacy in treated patients.

• #24 Hypermobility syndromes in children and adolescents: Assessment, diagnosis and multidisciplinary management

  https://www1.racgp.org.au/ajgp/2022/june/hypermobility-syndromes-in-children-and-adolescent

  When pain is persistent and causes distress or limits function, psychological intervention to explore stressors and develop coping strategies for chronic pain, anxiety and related fatigue is helpful. […] Recurrent joint sprains, subluxations and low-force dislocations can be addressed by a physiotherapist with judicious use of supervised, progressive, motor control, strengthening and endurance exercise commencing in the normal physiological joint range and gradually moving into the child’s hypermobile range. […] Most paediatricians are familiar with functional gastrointestinal disorders and can advise on symptom management as needed. […] Debilitating fatigue is a common complaint that affects a child’s social, educational and recreational life. […] The prevalence of anxiety disorders in those with hEDS/G-HSD is high, and identifying and addressing early signs may prevent worsening with age.

• #24 Hypermobility syndromes in children and adolescents: Assessment, diagnosis and multidisciplinary management

  https://www1.racgp.org.au/ajgp/2022/june/hypermobility-syndromes-in-children-and-adolescent

  Managing children and adolescents with syndromic hypermobility and their parents is challenging in the context of a standard consultation. […] The GP is key to comprehensively managing a patient with symptomatic hypermobile/hEDS/HSD as their central health coordinator. Management is multidisciplinary, shared with allied health practitioners and relevant specialists. […] The child’s treatment will vary depending on their presenting signs and symptoms, which will change over the course of their life. […] Attention to education and empowerment of the patient and family are essential as part of the development of effective self-management strategies. […] Younger children with hypermobility syndromes present with musculoskeletal pain most frequently, but abdominal pain and headaches also occur.

• #25 Joint Hypermobility: Types, Symptoms & Safe Exercises

  https://jeanniedibon.com/understanding-joint-hypermobility/

  We know that appropriate exercise and movement practices that are adapted for hypermobility are important to the long-term management of symptomatic hypermobility. […] Movement does need to be tailored for hypermobility. It needs to include isometric, eccentric, and concentric exercises. People with hypermobility sadly often do not do well with traditional physical therapy approaches and it does need to be adjusted. […] Overall, it helps to learn as much about hypermobility as possible and ensure people are aware of your condition. We know the following can help with long-term management: Regular exercise this can be little and often. […] Pacing we may need to adjust our daily activities to ensure we do not overstrain joints or push through joint pain. […] Stress management we know stress can make many conditions worse. Pain is one of them, gentle breathing exercises or meditation can help. […] Emotional support being able to connect with other people who have hypermobility can be really helpful. The Zebra Club offers a supportive online community.

• #26 Hypermobility Syndrome: Causes, Symptoms, and Treatment

  https://patient.info/doctor/hypermobility-syndrome-pro

  The aim is for young people to manage their own exercise; however, this may take time. Working in partnership with the child will be crucial to improving outcomes. […] Pain can affect concentration, memory, mood and sleeping. Reassurance is needed that the pain is not harmful. […] Physiotherapy can help to promote this using specific exercises that can be incorporated into daily life. […] OT may be helpful for participation in activities of daily living and helping with appropriate interventions. […] Schools may benefit from advice on helping pupils with benign joint hypermobility syndrome. […] Benign joint hypermobility syndrome is generally a self-limiting condition which improves as the child develops increased muscle size and strength, reducing joint looseness. A full return to normal activities is the usual outcome.

• #26 Hypermobility Syndrome: Causes, Symptoms, and Treatment

  https://patient.info/doctor/hypermobility-syndrome-pro

  Joint hypermobility syndrome, also known as benign hypermobility syndrome, is a connective tissue disease characterised by joint instability, chronic pain, and minor skin changes. […] Many with joint hypermobility syndrome have pain and fatiguability when writing by hand and experience posture-related muscular pains, generalised tiredness and altered sleep patterns and concentration – all of which can affect school performance. […] Management begins with the assessment, which should include a full history, symptom scoring and discussion of the child’s activity levels, including hobbies, physical activity and sleep, the impact of symptoms on learning and participation, and the child’s level of understanding of the problem. […] The principle of treatment is that strengthening of specific muscle groups will help to support the hypermobile joints, improve posture and increase strength, tone and fitness. Treatment includes patient education, activity modification, stretching exercises, osteopathic manipulation and physiotherapy. The goal is full participation in all activities.

• #27

  https://www.nursingcenter.com/cearticle?an=00587875-202304000-00001&Journal_ID=3402523&Issue_ID=6649307

  6. With no approved treatment or cure for hEDS or hypermobility spectrum disorder (HSD), patients with SJH often use various modalities to manage symptoms, whether self- or externally administered. […] Patients with SJH often use foot, finger, and/or oral orthosis (shoe inserts, finger splints, and bite splints). […] 7. There are several considerations when strategizing medications for this population. […] Patients with SJH require a wide range of medications, in combinations unique to their symptoms and comorbid conditions. […] 8. Although data are lacking to establish effects of nutritional supplements on symptoms related to SJH, one can extrapolate from studies performed in cohorts with other painful conditions. […] Nutritional supplementation should always be guided by a qualified clinician who will be aware of potential interaction with other supplements or medications, including the possibility of hidden substances, in that supplements are regulated by the FDA not as drugs, but as food.

• #28 School toolkit for JHS and EDS – School Toolkit for EDS and JHS

  https://theschooltoolkit.org/

  A free resource for staff to help support pupils with joint hypermobility syndrome (JHS) or the Ehlers-Danlos syndromes (EDS) […] Find out about reasonable adjustments to enable pupils with symptomatic hypermobility, JHS or EDS to participate in their education and everything school offers […] Helping pupils with JHS and EDS stay physically active […] The schools toolkit is a free resource developed in partnership by The Ehlers-Danlos Support UK and The HMSA with content led by Jane Green, MA Ed. / AHT, Educationalist, and contributions by teachers Kerstin Holm and Georgia Earl and Kay White, physical wellbeing and rehabilitation practitioner. It aims to help school staff to provide appropriate support to pupils with symptomatic hypermobility, joint hypermobility syndrome or any type of Ehlers-Danlos syndrome. […] Providing management-focused patient support groups, and educational programs, information, and advice to hypermobile people and their wider support network, including health and social care professionals.

• #29 Hypermobility: Causes, Treatment

  https://www.gillettechildrens.org/conditions-care/hypermobility

  With more severe symptoms, however, our experts might recommend treatments that include steps to help: Minimize pain, Prevent injury, Stabilize joint function. […] Specialists in physical therapy and occupational therapy might evaluate your childs gross motor skills. […] Your childs treatment might include: Exercises that improve balance and coordination, Exercises that reduce pain and stabilize joints, Customized footwear and braces (also known as orthoses), Options for maintaining an active lifestyle, Ways to safely participate in sports activities, Posture instruction, Aquatic (pool) therapy, Strategies for decreasing pain when writing, Hand splints or bracing, Coping strategies for fatigue. […] If your child has hypermobility, our multidisciplinary team of specialists will create a treatment plan specifically designed to meet their unique needs. […] At Gillette, you’ll have a family-centered team that works closely with your primary care providers, teachers, and school or community therapists.

• #30 Hypermobility Spectrum Disorders (Joint Hypermobility Syndrome)

  https://patient.info/bones-joints-muscles/hypermobility-syndrome-leaflet

  The aim of supported self-management is to help young people to understand the need to exercise regularly and work through discomfort over time. […] Physiotherapy uses specific exercises to work on the muscles that most need help. It also helps support your child to help them add regular exercise into their daily life. […] A podiatrist may be able to offer corrective insoles to correct the posture of the feet. […] Schools should encourage affected children to take part in sport, whilst making allowances for the child’s reduced stamina. […] For most children, symptoms improve as muscle size and strength increase with growth and age. This muscle growth reduces joint looseness.

• #30 Hypermobility Spectrum Disorders (Joint Hypermobility Syndrome)

  https://patient.info/bones-joints-muscles/hypermobility-syndrome-leaflet

  Hypermobility spectrum disorders include all people with what used to be called joint hypermobility syndrome, and before that benign joint hypermobility syndrome. […] Treatment is aimed at increasing muscle strength and joint resilience without causing injury. […] The first aim of treatment is aimed at strengthening the muscles that need to support the hypermobile joints. This will improve posture, strength and fitness for most children. […] Successfully increasing fitness needs education and moral support, so that children believe in the treatment and will persevere. […] The aim of treatment, whether from a physiotherapist, doctor, PE teacher or sports coach, is to help children treat this condition themselves. […] However in severe cases, or where exercise and support are not helping, it is important to go back to your doctor to ask for help again.

• #31 The Ehlers-Danlos syndromes (EDS) GP Toolkit

  https://gptoolkit.ehlers-danlos.org/

  A symptoms-based approach to hEDS/HSD is then indicated. Discuss what issues are affecting the patient the most at present and work from there to build a long-term relationship of mutual learning. […] Troublesome symptoms can vary wildly between patients as well as over time. It is key to work together to help people develop an effective self-care toolkit, allowing patients some leeway to alter medication doses or use as-required medicines where appropriate. […] A brief overview of management issues in hEDS/HSD, albeit this is difficult with such a complex condition. […] Medication, Surgery, and Physiotherapy Among Patients With the Hypermobility Type of Ehlers-Danlos Syndrome.

• #31 The Ehlers-Danlos syndromes (EDS) GP Toolkit

  https://gptoolkit.ehlers-danlos.org/

  The Ehlers-Danlos syndromes (EDS) are heritable connective tissue disorders affecting the quality of collagen in every part of the body. […] The old diagnosis of Joint Hypermobility syndrome (JHS) is now considered part of the spectrum of Hypermobile EDS. […] Hypermobile EDS is now understood as a multi-system disorder which can have a marked impact on health and which may help us to explain apparently mysterious multiple symptoms. […] The key role of the GP at this moment in time is in diagnosing hEDS/HSD, validating the patient’s symptoms and co-ordinating care. hEDS/HSD isn’t as rare as you may think. […] The median time from symptom onset to seeking a GP opinion is 2 years and the median time to diagnosis 10 years. If we make an early diagnosis and manage the conditions appropriately, there may be potential to reduce long term disability which can occur from EDS.

• #32

  https://www.ttsh.com.sg/Patients-and-Visitors/Pages/Find-Conditions-and-Treatments-Details.aspx?condition=Joint-Hypermobility-Syndrome

  Joint Hypermobility Syndrome is different from other disorders that cause local joint hypermobility and joint looseness, such as Ehlers-Danlos syndrome and Marfan syndrome. […] Due to excessive joint looseness, hypermobility may lead to wear and tear of joint surfaces, and strains on soft tissue structures around the joints. These result in joint pain and JHS. Some people with hypermobility may have affected sense of joint movement, causing an inability to sense that joints are overstretched or injured. […] For management of acute symptoms: Rest and abstain from activities that may further strain your affected joints, Physical therapy and joint protection (e.g. splints, taping and applying elastic bandages), Non-steroidal anti-inflammatory drugs (NSAIDs) or paracetamol can be used for pain control.

• #32

  https://www.ttsh.com.sg/Patients-and-Visitors/Pages/Find-Conditions-and-Treatments-Details.aspx?condition=Joint-Hypermobility-Syndrome

  The long-term management for JHS is achieved through changes in lifestyle and exercise regimen, joint protection, and observing proper body mechanics. […] Most people with regular joint hypermobility do not show symptoms of JHS and live their lives without any joint ailments. If you suffer from JHS, the outlook is excellent with just a simple adjustment of your way of life to reduce the frequency of joint symptoms. Proper care of your joints early in life will reduce the chances of you developing degenerative joint disease (secondary osteoarthritis) in the future.

• #33 Hypermobility – North & East

  https://northeast.devonformularyguidance.nhs.uk/referral-guidance/eastern-locality/rheumatology/hypermobility

  Hypermobility can be associated with widespread musculoskeletal pains although many people with hypermobile joints do not have musculoskeletal pain. […] It is not necessary to refer patients with hypermobility to the Rheumatology service unless you are concerned about an alternative diagnosis. The diagnosis of hypermobility and Hypermobile Ehlers Danlos Syndrome (hEDS) should take place in primary care (see The Ehlers-Danlos Syndromes Toolkit). […] There is no commissioned pathway for secondary care referral of hypermobility or suspected Hypermobile Ehlers Danlos Syndrome (hEDS). […] Referral to the Pain Clinic may be appropriate if the patient’s symptoms do not respond to the measures outlined in Primary Care Management. […] Referral for Clinical Genetic testing is appropriate in specific sub-types of EDS (see management section).

• #33 Hypermobility – North & East

  https://northeast.devonformularyguidance.nhs.uk/referral-guidance/eastern-locality/rheumatology/hypermobility

  The diagnosis of hypermobility and Hypermobile Ehlers Danlos Syndrome (hEDS) should take place in primary care (see The Ehlers-Danlos Syndromes Toolkit). […] Referral to physiotherapy is recommended for muscle strengthening exercises to improve joint stability. […] Referral to the pain clinic may be appropriate if the patient’s symptoms do not respond to the measures outlined in Primary Care Management. […] Clinical genetics no longer routinely assess patients with hypermobile type Ehlers-Danlos syndrome (hEDS) or joint hypermobility syndrome (JHS). There is no genetic test available for hEDS as the genetic basis is still unknown. […] It is important to know that occasionally some rare and more serious genetic conditions, such as Marfan and Loeys-Dietz syndromes, or the vascular form of Ehlers-Danlos (vEDS, or EDS type 4), can present with hypermobility.

• #34 Benign Joint Hypermobility Syndrome: Evaluation, Diagnosis, and Management

  https://www.degruyterbrill.com/document/doi/10.7556/jaoa.2006.106.9.531/html?lang=en&srsltid=AfmBOop2iaLqVb0nQf8saeHzHxLej9Tz8ZeRwPSzrbJr6uzuXU74QJIa

  Benign joint hypermobility syndrome (BJHS) is a connective tissue disorder with hypermobility in which musculoskeletal symptoms occur in the absence of systemic rheumatologic disease. […] Treatment modalities include patient education, activity modification, stretching and strengthening exercises for the affected joint, and osteopathic manipulative treatment. […] The first step in managing BJHS is to emphasize to patients that this syndrome is a nonprogressive, noninflammatory connective tissue disorder. […] Effective treatment may be accomplished with lifestyle modification, altering the patient’s exercise regimen, joint protection, and proper body mechanics. […] Along with exercise therapy, OMT is a useful adjunctive treatment modality for BJHS. […] Osteopathic manipulative treatment helps induce articular release resulting in increased joint motion, and reduced pain as well as improved blood flow, lymphatic drainage, and proprioception.

• #34 Benign Joint Hypermobility Syndrome: Evaluation, Diagnosis, and Management

  https://www.degruyterbrill.com/document/doi/10.7556/jaoa.2006.106.9.531/html?lang=en&srsltid=AfmBOop2iaLqVb0nQf8saeHzHxLej9Tz8ZeRwPSzrbJr6uzuXU74QJIa

  Education, activity modification, and exercise therapy to improve muscular stability and proprioception at specific joints are essential to symptom management. […] Finally, primary care physicians are the best resource to educate patients with BJHS about their illness, potential complications, and prognosis.

• #35 Guide | Physical Therapy Guide to Hypermobility Spectrum Disorders | Choose PT

  https://www.choosept.com/guide/physical-therapy-guide-benign-hypermobility-joint-syndrome

  Hypermobility spectrum disorders are conditions affecting the bodys ligaments and tendons. People with these conditions have hypermobile (looser than typical) joints. This joint looseness (laxity) and instability continues throughout their lifetime. HSDs can lead to long-term problems, such as chronic pain, unstable joints, and fatigue. This can cause people to limit their activities. Physical therapists help people with HSDs reduce their pain and increase joint stability and strength. […] Physical therapy is vital for people with HSDs. Physical therapists offer strategies to help people reduce and/or manage pain and improve their: Joint stability and strength, Energy levels, Balance, Daily function. […] Your physical therapist will develop a personalized plan of care to treat your condition. Your treatment plan may include: Muscle strengthening. Muscles provide stability to joints. Strength training is essential for pain management and injury prevention.

• #35 Guide | Physical Therapy Guide to Hypermobility Spectrum Disorders | Choose PT

  https://www.choosept.com/guide/physical-therapy-guide-benign-hypermobility-joint-syndrome

  Physical therapists are experts in prescribing pain-management techniques that reduce or eliminate the need for medication, including opioids. […] Because hypermobility conditions are inherited, they cannot be prevented. Early detection and treatment (before pain develops) may help minimize pain or other impairments. This can enhance your long-term well-being. […] All physical therapists are prepared through education and experience to treat conditions such as HSDs. When seeking a provider you may want to consider: A physical therapist who is a board-certified clinical specialist, or who completed a residency or fellowship in orthopedic or pediatric physical therapy. This physical therapist has advanced knowledge, experience, and skills that may apply to your, or your childs, condition.

• #36 Joint hypermobility syndrome: What it is, tests, and more

  https://www.medicalnewstoday.com/articles/hypermobility

  Joint hypermobility syndrome or double jointedness means that a persons joints bend more than usual. In some people, this can cause joint pain and injury. […] Joint hypermobility syndrome can happen on its own with no other symptoms. It can also be a symptom of another disorder, such as Marfan syndrome or Ehlers-Danlos syndrome. […] Treatment depends on the reason for the hypermobility. […] In most cases, treatment focuses on managing symptoms rather than the underlying disease. […] Some treatment options include: pain relief medication, physical therapy, supportive and assistive devices to reduce the risk of injury, strength-building exercises to protect the bones and build muscle strength, stress management techniques, supplements such as vitamin D and calcium to prevent osteoporosis, ongoing monitoring to check for bone injuries and bone mineral loss, treatment for reflux and other digestive symptoms. […] The outlook for many hypermobility syndromes is good with the right supportive care.

• #37 Joint Hypermobility Syndrome Causes, Symptoms, Test, Treatment

  https://www.medicinenet.com/hypermobility_syndrome/article.htm

  Frequently, there are no long-term consequences of joint hypermobility syndrome. However, hypermobile joints can lead to joint pain. Over time, joint hypermobility can lead to degenerative cartilage and arthritis. Certain hypermobile joints can be at risk for injury, such as sprained ligaments. […] Because joint hypermobility syndrome is inherited, it is not preventable. Nevertheless, when joint hypermobility syndrome causes symptoms, prevention of injury and pain is possible by avoiding trauma and with appropriate treatments.

• #38

  https://www.chronicpainpartners.com/nursing-management-patients-ehlers-danlos-syndrome/

  Nursing Management of Patients with EhlersDanlos Syndrome […] EhlersDanlos syndrome (EDS) refers to a group of hereditary connective tissue disorders which together affect an estimated one in 5,000 persons worldwide. There is little mention in the nursing literature regarding EDS. Nurses are generally unfamiliar with the conditions signs and symptoms, and few health care organizations have established clinical protocols for assessing and managing these patients. […] Its imperative that nurses familiarize themselves with the often disabling, sometimes life-threatening clinical manifestations of this syndrome. The primary symptoms of EDS include skin extensibility, joint hypermobility, and general tissue fragility. […] As awareness and recognition of the syndrome improve, nurses are increasingly likely to care for patients with EDS. This article gives a brief overview of the syndrome and provides guidance on ways to manage symptoms, recognize and prevent serious complications, and improve patients quality of life.

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