If you or someone you know has Hypermobile Ehlers-Danlos Syndrome (hEDS), treatment focuses on managing symptoms and improving quality of life. hEDS means that your joints move beyond the typical range, making you more flexible, but this extra bendiness can also impact other parts of your body and its overall functioning. While Hypermobility and being bendy might seem like a fun party trick at first, it often comes with challenges due to associated conditions. A common misconception is that Hypermobility either disappears with age or that EDS always worsens and has no treatment options – both ideas are incorrect.

It’s true that there’s no cure for hEDS, however there is much that can be done to manage your pain, body wide symptoms and improve your quality of life. Since EDS affects so many different parts of the body – and because everyone experiences it differently – you need more than just one specialist and more than one health professional. A Hypermobile, EDS aware multidisciplinary team, that uses a collaborative team is essential to help you navigate the condition and get the best possible care[1].

Understanding Hypermobile Ehlers Danlos Syndrome (hEDS)

Hypermobile Ehlers-Danlos Syndrome (hEDS) is a type of Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders that affect collagen – the protein responsible for giving our skin, joints, and blood vessels strength and flexibility[2]. hEDS is a complex and often misunderstood condition. Unlike other types of EDS, hEDS does not have a known genetic marker, which makes diagnosis particularly challenging [3].

Overlapping genetics

Hypermobility Ehlers-Danlos Syndrome (hEDS) is part of a group of conditions called Heritable Connective Tissue Disorders (HCTDs). Like other types of Ehlers-Danlos Syndrome (EDS), hEDS can have genetic similarities with other connective tissue disorders due to the complex nature of the genes involved. These conditions affect connective tissues, which support and structure various parts of the body, including the skin, joints, and blood vessels.

Some of the patients I work with have been diagnosed with hEDS but also show “red flag” signs of other HCTDs. In these cases, understanding their genetics is crucial for accurate diagnosis and treatment.

The genetic overlap happens because many of these disorders share biological processes and genetic changes that impact connective tissue structure and function. For example, mutations in genes responsible for making collagen or other structural proteins can cause similar symptoms across different HCTDs. This is why someone with one type of HCTD may experience symptoms typically seen in another, making diagnosis and management more challenging.

Hypermobile Ehlers-Danlos Syndrome is mainly characterised by joint hypermobility and instability. However, it can also cause softer, stretchier skin that bruises easily, along with chronic muscle and joint pain, headaches, bladder issues, and problems with digestion and circulation.

hEDS has many other signs and symptoms that are often mistaken for other diagnoses, including fibromyalgia, anxiety, functional neurological disorder and many other chronic pain related conditions.

For more information regarding the causes of hEDS and diagnosis see Hypermobile Ehlers-Danlos Syndrome (hEDS) symptoms and causes.

The first step: Establishing a multidisciplinary, collaborative team for Hypermobile Ehlers-Danlos Syndrome (hEDS) treatment

As hEDS affects your whole body, not just one part it can impact your joints, skin, blood vessels, nerves, bladder, heart, gut, and more, meaning no two people experience it the same way. Some of you might struggle more with joint pain and dislocations, while others deal with bladder and gut issues, fatigue, or circulation problems.

Because hEDS presents uniquely in each individual, there’s no one-size-fits-all approach to care.

That’s why having a team of specialists who understand EDS and Hypermobility is so important. By working together, doctors, physiotherapists, psychologists, exercise physiologists, occupational therapists, and other health professionals can create a care plan that’s tailored to your unique needs[4]. It’s all about managing you most impactful symptoms, improving your quality of life, and making sure you get the correct support and treatments at the right time.

You need a comprehensive, holistic, proactive, collaborative team approach that meets your unique needs and priorities. The goal of a multidisciplinary team is to address all aspects of the condition, prevent further complications, and enhance the overall well-being of the patient.

Here’s how different specialists contribute to the ongoing management and care of individuals with hEDS (this list is by no means exhaustive):

1. General Practitioners (GPs) and EDS-Specialising Doctors

A general practitioner plays a pivotal role in managing the overall health of a person with hEDS. They provide referrals to specialists and ensure that all aspects of care are coordinated. EDS-specialising GPs may have a more in-depth understanding of the condition and its impact on health, allowing them to take a more proactive approach in managing symptoms and providing long-term care.

2. Physiotherapists

Physiotherapists trained in Hypermobility and Ehlers-Danlos Syndrome are essential to your Hypermobile Ehlers-Danlos Syndrome (hEDS) treatment plan. They will help create personalised exercise programs that are designed to improve joint stability, co-ordination, strength, and mobility. These programs are crucial for individuals with hEDS to prevent injuries, develop increased understanding of their conditions, improve pain management, and ensure that muscles surrounding hypermobile joints are strengthened and supported. Since movement, functional capacity and physical health are central to managing hEDS, physiotherapists work closely with other specialists to support the patient’s physical well-being.

For more information of pain management in hEDS see Hypermobility treatments and effective pain management.

Some of the therapies and techniques that are evidence based and that I have found successful to manage the many symptoms of Hypermobility include[5]:

• Manual therapies-care not to overstretch ligaments and joints is needed
• Specialised strengthening exercises- that focus on joint stabilisation, are low impact and POTS sensitive
• Breathing retraining with core engagement
• Movement and motor pattern retraining- creating the balance between recruiting muscles to support joints and not over-recruiting or guarding which causes pain.
• Muscle energy techniques
• Trigger point therapy
• Dry needling
• Pain and fatigue education
• Kinesiotaping or bracing
• Nerve stretches
• Posture, balance and proprioception training
• Pacing and calming therapies
• Gait, walking and functional rehabilitation
• Deep tissue and myofascial massage
• Heat and cold therapies
• Hydrotherapy
• Transcutaneous Electrical Nerve Stimulation (TENS)
• Mobility aides
• General fitness and endurance

3. Psychologists

Living with a chronic condition like hEDS can lead to emotional stress, including dealing with ongoing pain and the limitations that come with the condition. Psychologists are vital in providing strategies for managing the psychological burden of hEDS. They can offer coping techniques, help patients navigate emotional challenges, and provide support for dealing with chronic pain and fatigue.

4. Rheumatologists

Rheumatologists are key players in the multidisciplinary team, as they specialise in joint-related issues. People with hEDS often experience joint hypermobility, pain, and dislocations, making rheumatologists essential for managing these symptoms. They work alongside other specialists to ensure pain is addressed and that joint health is optimised.

5. Cardiologists

In cases of vascular hEDS or when symptoms like dysautonomia and Postural Orthostatic Tachycardia Syndrome (POTS) are present, cardiologists become an integral part of the team. Vascular EDS, in particular, requires careful monitoring due to the risk of vascular rupture. Cardiologists help manage cardiovascular health and assess any issues related to blood vessels, circulation, and heart function.

6. Gastroenterologists

The digestive system is often affected in individuals with EDS, leading to issues like constipation, irritable bowel syndrome (IBS), diarrhoea, nausea or gastroesophageal reflux disease (GERD). Gastroenterologists help manage these symptoms and ensure that digestive health is maintained. They work with patients to create dietary plans, offer treatments for gastrointestinal issues, and monitor overall gut health.

7. Exercise Physiologists

Exercise physiologists focus on developing personalised movement plans to improve physical function, reduce pain, and promote overall health. They assess the individual’s capabilities and limitations and create exercise routines tailored to the needs of someone with hEDS. Their role is critical in helping patients maintain or regain strength, flexibility, and overall fitness without exacerbating symptoms.

8. Pain Management Specialists

Chronic pain is a common and often debilitating symptom of hEDS. Pain management specialists use various approaches to reduce discomfort and improve quality of life. This can include medication, physical interventions, nerve blocks, and alternative hEDS treatments. Their expertise in managing long-term pain is vital for individuals with hEDS who face persistent discomfort due to joint instability and other symptoms.

9. Occupational Therapists (OTs)

hEDS can make everyday tasks challenging due to joint instability, fatigue, or pain. Occupational therapists help individuals with hEDS find adaptive strategies and tools to manage day-to-day activities more easily. This might include advice on ergonomics, how to perform tasks safely (such as dressing or using a computer), and incorporating assistive devices to reduce strain on the body.

10. Prolotherapy and Rehabilitation Physicians

Prolotherapy physicians specialise in providing injections to stimulate healing and stabilise hypermobile joints. This form of treatment can help alleviate pain and prevent injury by strengthening the ligaments and tendons surrounding the joints. Rehabilitation physicians, on the other hand, work to improve physical abilities, reduce pain, and enhance functional capacity through specialised rehabilitation programs.

11. Speech Therapists

In some cases, hEDS can affect speech, swallowing, and breathing. Speech therapists assist with managing these difficulties, providing support for conditions like temporomandibular joint (TMJ) pain, voice and swallowing difficulties, and breathing control. Their expertise is crucial for ensuring that individuals can eat, speak, and breathe comfortably.

12. Geneticists

• hEDS cannot be tested for genetically, however exclusion of other types of EDS is an essential part of ensuring that your diagnosis is accurate.
• This information is essential for tailoring Hypermobile Ehlers-Danlos Syndrome (hEDS) treatment strategies and predicting potential complications.
• While geneticists do not provide ongoing care, their expertise in genetic testing if “red flags” are present, is fundamental to identifying if there are other underlying HCTDs and provide a definitive diagnosis. This can help tailor treatment strategies, predict complications, and inform family members of potential genetic risks.

A holistic, proactive, and comprehensive approach

The complexity of hEDS, with its range of symptoms and impacts on various systems, necessitates a holistic, proactive, and comprehensive approach to care. No single specialist can address all the challenges that come with hEDS, which is why a multidisciplinary team is so important. Each specialist brings valuable expertise to the table, ensuring that all aspects of the condition are managed effectively. This collaborative approach not only improves symptom management but also enhances the overall quality of life for individuals living with hEDS.

A note about medications

Your doctor might prescribe medications to help manage your gut, bladder, Mast Cell Activation syndrome, pain and inflammation. Always follow their advice, though being aware of the benefits and risks is important and letting them know if you have any allergies or intolerances is crucial. When considering pain management, this can be quite complex. Medications are often not the first line of Hypermobile Ehlers-Danlos Syndrome (hEDS) treatment due to several reasons:

The chronic nature of pain

Pain in hEDS is often chronic and multifaceted, involving joint subluxations, muscle guarding and weakness, nerves, pain, past negative clinician interactions, and issues with multi body systems as well as sleep, bladder and gut issues [6]. In hEDS pain can originate from tissue damage to muscles, ligaments and joints, as well as nerves and the nervous system, organs,  and other systems in the body. Pinpointing the exact cause of “the pain” can be a difficult task and medications alone may not address these underlying causes effectively.

Pain medications can be a double-edged sword, especially in conditions like Hypermobile Ehlers-Danlos Syndrome (hEDS) and other connective tissue disorders. Here’s a rundown of the risks and benefits:

Benefits of medication:

1. Pain Relief: Medications like NSAIDs, acetaminophen, and opioids can provide significant relief from chronic pain, improving the quality of life.
2. Improved Functionality: By reducing pain, these medications can help individuals perform daily activities more comfortably.
3. Short-term Management: For acute pain episodes, medications can be very effective in providing quick relief.

Risks of medication:

1. Side Effects: Many pain medications, such as NSAIDs and opioids, can have significant side effects, including gastrointestinal issues, which are already common in hEDS patients. While opioids carry risks of addiction, overdose, and other serious side effects[7].
2. Tolerance and Dependence: Long-term use of pain medications, especially opioids, can lead to tolerance (requiring higher doses for the same effect) and physical dependence.
3. Limited Research: There is a lack of extensive research on the long-term effectiveness and safety of these medications specifically for Hypermobility and hEDS and similar conditions. This makes it challenging to develop standardised treatment protocols.

Alternative Approaches:

Given these risks, non-pharmacological approaches like physical therapy, cognitive-behavioural therapy, and lifestyle modifications are often recommended as part of a comprehensive pain management plan.

It’s essential to work closely with healthcare professionals to weigh these risks and benefits and develop a personalised pain management strategy. If you want to dive deeper into this topic, you can find more detailed information here.

Surgery as a Hypermobile Ehlers-Danlos Syndrome (hEDS) treatment

In rare cases, surgery might be needed to repair damaged joints or tissues, this needs to be considered with great care as many specialists and surgeons are not aware of the unique needs and potential complications that can occur in people with Hypermobility and/or Ehlers-Danlos individuals when undergoing surgery [8].

Surgery is usually only considered if all other treatments haven’t worked.

A final note

Living with hEDS can be challenging, but with the right team of healthcare professionals and treatments, you can lead a full and active life. Remember to work closely with your healthcare team, listen to your body, and make adjustments as needed. You’re not alone in this journey, and there are plenty of resources and support available to help you along the way.

It’s essential to work with a full multidisciplinary team of healthcare professionals to develop a comprehensive pain management plan tailored to individual needs.

References

[1] Tinkle, B. T., & Levy, H. P. (2017). Ehlers-Danlos syndrome: Multidisciplinary approach to diagnosis and management. American Journal of Medical Genetics, 173(3), 791-798. https://doi.org/10.1002/ajmg.a.38145

[2] Malfait, F., Francomano, C., Byers, P., et al. (2020). The 2017 international classification of the Ehlers-Danlos syndromes. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 5-7.

[3] Gensemer, C., Burks, R., Kautz, S., Judge, D. P., Lavallee, M., & Norris, R. A. (2021). Hypermobile Ehlers‐Danlos syndromes: Complex phenotypes, challenging diagnoses, and poorly understood causes. Developmental dynamics, 250(3), 318-344. https://doi.org/10.1002/dvdy.220

[4] The Ehlers-Danlos Society. (n.d.). Why a multidisciplinary approach is necessary for EDS. Retrieved February 02, 2025, from https://www.ehlers-danlos.com/

[5] Engelbert, R. H. H., Juul‐Kristensen, B., Pacey, V., de Wandele, I., Smeenk, S., Woinarosky, N., Sabo, S., Scheper, M. C., Russek, L., & Simmonds, J. V. (2017). The evidence‐based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. American journal of medical genetics. Part C, Seminars in medical genetics, 175(1), 158-167. https://doi.org/10.1002/ajmg.c.31545

[6] Chopra P, Tinkle B, Hamonet C, et al. Pain management in the Ehlers-Danlos syndromes. Am J Med Genet C Semin Med Genet. 2017;175C:212-219.

[7] Arbuck DM. A fresh look at opioid antagonists in chronic pain management. Practical Pain Management. 2018;17(8).

[8] American Academy of Family Physicians. (2021). Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders. American Family Physician, 103(8), online Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders | AAFP