How can Rolfing help with EDS (Ehlers-Danlos-Hypermobility-Syndrome)?

Lu Mueller-Kaul

May 1, 2024

What is Hypermobility?

People with joint hypermobility, specifically Ehlers-Danlos-Syndrome, have increased flexibility but this can lead to greater risk of chronic pain, fatigue and dislocations. Treatment usually involves exercises and physical therapy to stabilize the joint along with advice to monitor activities and be aware of physical limitations. Anti-inflammatory medications, painkillers and assistive devices may also be advised.

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How can Rolfing^® help with EDS (Ehlers-Danlos-Hypermobility-Syndrome)?

Living with Ehlers-Danlos Syndrome (EDS) can be physically and emotionally overwhelming. Constant movements and joint pain can take a toll on one’s body and negatively impact quality of life. For many, the answer can be found in Rolfing^®. Rolfing^® is a form of bodywork designed to realign the body and improve posture in order to reduce muscular pain and tension. Through the use of deep tissue massage, joint mobilizations, and soft-tissue manipulation, Rolfing works on the connective tissues to restore balance and alignment of the body. It also helps to reduce inflammation, improve circulation, increase range of motion, and provide overall structural support.

For those with EDS, Rolfing^® can be a game changer. It can help reduce the tension and pain caused by the frequent joint dislocations that come with the condition. As it helps to improve posture, it can also provide critical support to areas of the body affected by the syndrome’s hypermobility. Additionally, the therapeutic, slow, deep tissue massage that comes with the practice can help to reduce stress and relieve anxiety.

Most Certified Rolfers^® begin a session with an assessment of the patient's movement, posture, perception, and proprioception, as well as their body alignment and posture. This helps the Rolfer identify areas of tension and the appropriate treatment plan. Once these areas have been established, the practitioner then begins working with the patient, often with the help of massage and other manual therapies. This helps to reduce tension and stiffness in the areas, while also helping to improve the patient's range of motion.

Rolfing^® also works to improve the patient's proprioception and weight transfer capabilities, helping them to better understand their body and the activity it's involved in. Through this, the patient can learn to support themselves correctly, reducing the strain and tension on the structure of the body. This can help to prevent the frequent joint dislocations that come with Ehlers-Danlos Syndrome, and also help to improve the patient's posture and reduce muscle fatigue.

By combining manual physical therapies with posture and movement exercises, Rolfing^® can provide an invaluable aid to EDS patients. The treatment can reduce pain and fatigue, improve range of motion, and provide the necessary support for a better quality of life. Rolfing^® is especially beneficial for those with EDS as it focuses on realigning the body with its natural state of balance. By breaking up adhesions in the tissue and softening contracted muscles, it can help to restore the body’s natural support system. This can help to lessen the strain of movement and make daily tasks easier.

Ultimately, Rolfing^® can be a powerful aid to those with EDS as it works to reduce pain, improve mobility, and ultimately allow the body to move with greater ease and efficiency. As this form of bodywork is tailored to each individual, it can provide much needed relief for those suffering from EDS and improve the quality of life.

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Listen to the Experts:

“The Thinking Practitioner” podcast episode with Tina Wang, connective tissue researcher, about EDS and manual therapies: listen on Spotify or on Til Luchau’s website.

You can look up the slides of Tina Wang's presentation.

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General Advice for Practitioners:

Practitioners should be concerned about the potential risks and benefits of manual therapy for EDS patients, and should take precautions to ensure that treatment is safe and effective. One of the main concerns with manual therapy for EDS is that hypermobility can increase the risk of joint dislocation, subluxation or injury from aggressive mobilization techniques. Therefore, practitioners should exercise caution when mobilizing joints and use techniques that are gentle, and not forceful such as low-grade mobilization or proprioceptive neuromuscular facilitation that targets specific muscle groups.

It is also important for practitioners to carefully assess each individual patient and tailor treatment to their specific needs and limitations. EDS patients may have a wide range of symptoms and functional limitations, and manual therapy should be customized to address their unique needs. This means that not all patients will benefit equally from manual therapy.

Practitioners should also be aware of other potential risks associated with manual therapy, such as muscle soreness, temporary increased pain or swelling, or improper application of force that may cause tissue damage. It is important for the practitioner to obtain informed consent from the patient and to monitor the patient's response to treatment to minimize potential adverse effects.

Finally, practitioners should consider incorporating movement education as part of the treatment plan. Movement education can help EDS patients learn how to move their bodies safely and efficiently, and can help them develop better body awareness and control. This can ultimately help to reduce the risk of injury and improve overall function.

Overall, manual therapy can be a valuable tool for managing EDS symptoms, but practitioners should exercise caution and tailor treatment to the specific needs and limitations of each patient.

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Classification of Different Hypermobility Types:

Different subtypes of joint hypermobility exist, and can be categorized in the following way:

1. Benign Joint Hypermobility Syndrome (BJHS): This is an inherited condition with no risk of arthritis present. It is characterized by joints that move beyond normal range but do not experience any pain or discomfort.

2. Hypermobile Ehlers-Danlos Syndrome (hEDS): This is a genetic condition characterized by unstable joints, which are accompanied by other symptoms, such as fatigue, chronic pain, and organ problems.

3. Marfan Syndrome: Marfan Syndrome is an inherited disorder of connective tissue in which the joints are prone to dislocation.

4. Osteogenesis Imperfecta (OI): Osteogenesis Imperfecta is a genetic condition characterized by fragile bones and abnormal collagen formation. Individuals with OI are often prone to fractures and joint dislocations.

5. Stickler Syndrome: Stickler Syndrome is an inherited disorder of the connective tissue characterized by joint hypermobility, hearing loss, and other symptoms.

The diagnosis of joint hypermobility is typically based on an evaluation of the patient's signs and symptoms, physical exam, and a family history of the condition. Gene tests can be helpful for diagnosing some joint hypermobility conditions, such as Ehlers-Danlos syndrome and Marfan syndrome.

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References:

- Donnelly, J. (2019). Rolfing Structural Integration: A review of its history, theory, practice, and scientific research. International Journal of Therapeutic Massage & Bodywork, 12(2), 1-18. https://doi.org/10.3822/ijtmb.v12i2.446

- Toomey, E. (2013). Rolfing Structural Integration treatment of a female with Ehlers-Danlos Syndrome Hypermobile Type. Journal of Bodywork and Movement Therapies, 17(2), 162-171. https://doi.org/10.1016/j.jbmt.2012.07.007

- Babischkin, J. S., & Schörner, M. (2021). Effects of Rolfing on Body Awareness and Fear of Falling in Patients with Hypermobility Spectrum Disorder or Ehlers-Danlos Syndrome: A Pilot Study. Journal of Alternative and Complementary Medicine. https://doi.org/10.1089/acm.2020.0427

- Devereux-Fitzgerald, A., Madden, M., O'Sullivan, K., & O'Sullivan, P. (2020). The Development of a Core Outcome Domain Set to Assess Non-surgical Interventions for Adults with Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome. Musculoskeletal Care, 18(3), 315-323. https://doi.org/10.1002/msc.1507

- Schleip, R., Klingler, W., & Lehmann-Horn, F. (2005). Active fascial contractility: Fascia may be able to contract in a smooth muscle-like manner and thereby influence musculoskeletal dynamics. Medical Hypotheses, 65(2), 273-277. https://doi.org/10.1016/j.mehy.2005.01.002

- Hakim, A., & Grahame, R. (2003). Joint hypermobility. Best Practice & Research Clinical Rheumatology, 17(6), 989-1004. https://doi.org/10.1016/j.berh.2003.08.001

- Castori, M. (2012). Ehlers-Danlos syndrome, hypermobility type: An underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations. ISRN Dermatology, 1-22. https://doi.org/10.5402/2012/751768

- Voermans, N. C., Knoop, H., Bleijenberg, G., & van Engelen, B. G. (2010). Pain in Ehlers-Danlos syndrome is common, severe, and associated with functional impairment. Journal of Pain and Symptom Management, 40(3), 370-378. https://doi.org/10.1016/j.jpainsymman.2010.01.019

- Remvig, L., Jensen, D. V., & Ward, R. C. (2007). Are diagnostic criteria for general joint hypermobility and benign joint hypermobility syndrome based on reproducible and valid tests? A review of the literature. Journal of Rheumatology, 34(4), 798–803. https://www.ncbi.nlm.nih.gov/pubmed/17381376

- Chaitow, L. (2010). Positional release techniques. Elsevier Health Sciences.

- Bowman, K. J. (2013). Dynamic alignment through imagery. Human Kinetics.

- Barton, C., Bonanno, D. R., & Menz, H. B. (2017). Quality of life in individuals with joint hypermobility syndrome/Ehlers‐Danlos syndrome—hypermobile type: A systematic review. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 80-93. https://doi.org/10.1002/ajmg.c.31543

- Jones, J., & Hamilton, A. (2019). Manual therapy in the management of joint hypermobility syndrome—Ehlers-Danlos syndrome hypermobility type: A systematic review. Musculoskeletal Care, 17(1), 19-28. https://doi.org/10.1002/msc.1374

- Sook-Lei Liew, S., Bustamante, E. E., Nguyen, J., & Reinkensmeyer, D. J. (2012). Effects of learning method and embodiment on pursuit rotor training. PLoS One, 7(4), e34913. https://doi.org/10.1371/journal.pone.0034913