Chiropractic and the Hypermobile Person

Chiropractic and the hypermobile person, and by hypermobile person, I mean people with the amazing and beautifully complex Ehlers-Danlos Syndrome (EDS) and hypermobility spectrum disorder (HSD). As always, we are tackling a controversial topic, and for those of you who follow the blog, you will know that I love tackling the controversial. Discussion of these topics should be encouraged in my book, so here we go with chiropractic and the hypermobile person.

Some people feel very strongly that chiropractic is contraindicated, inappropriate or even downright dangerous for patients with hypermobile bodies. The difficulty I have with this position is that this opinion that chiropractic is dangerous and inappropriate for these patients, yet other manual therapies, such as physiotherapy and osteopathy are perfectly safe and completely appropriate for these patients. So, my question is, why is chiropractic special in this scenario? What makes chiropractic so dangerous, when it is simply another branch of the group called manual therapies? I think I know where this issue stems, which I hope to discuss with you in the blog post.

What is EDS/HSD?

For those reading this blog who are unfamiliar with EDS/HSD, EDS is a rare but fascinating group of connective tissue disorders that affect the body’s ability to produce strong collagen—the glue that holds our tissues together. EDS is a group of genetic disorders that impact the connective tissues, which provide strength and elasticity to the skin, joints, blood vessels, and other organs. There are currently 13 recognized types of EDS1,2, each with its own distinct features, ranging from joint hypermobility to fragile skin and vascular complications. There are those who argue that HSD is within the same spectrum of connective tissue/hypermobility disorder as EDS, without some of the genetic hallmarks currently identified in the literature1. HSD can sometimes, therefore, be viewed as a “lesser” condition, not needing the same approach or acknowledgement as EDS. This view becomes problematic in situations where we need to consider the effect HSD is having on the patient’s quality of life, and how we approach their management in the clinic.

Chiropractors Don’t Understand EDS/HSD

I will always advocate for the patient to seek the right medical interventions for whatever condition/complaint they may be suffering from a clinician who understands the nuances of their condition. The same is true for even simple low back pain, if you seek treatment from a clinician who does not understand your complaint, then you are less likely to have a positive experience and outcome from that clinician.

Notwithstanding, the statement in the title above is not as true as it might appear to those who hold this belief. In October this year, I hosted a webinar for the Royal College of Chiropractors (RCC) titled: “Approaching the Hypermobile Patient”. At the start of the webinar, I used Mentimeter.com to engage with the audience. I asked the audience the question: “What word(s) come to mind when you think of EDS/HSD from your clinical experience?” The world cloud below is what the 300+ chiropractors in the audience for this webinar produced.

EDS Word cloud

For those of you who are familiar with EDS and HSD, you can see this word cloud shows the commonly used terms and phrases used to describe EDS and HSD. I was impressed with this word cloud as it demonstrates that chiropractors have a good grasp of EDS and HSD.

Below is a bar graph of the responses by chiropractors when asked the question: “What treatment/management modalities do you use when you see EDS/HSD patients in your clinical practice?”

“Chiropractors Just Click and Crack the Spine”

Personally, my opinion is this is the prevailing attitude when most people think of chiropractors. The public in general thinks all we chiropractors do is crack the spine and that’s it. Now to be fair, I have met a lot of chiropractors who only perform spinal manipulation to click the joints of the body, so I can see exactly where this idea comes from.

As you can see from the graph above, the chiropractic profession utilises a range of management techniques for patients with EDS and HSD. This is encouraging evidence that the chiropractic profession is well aware of the diverse and complex needs of EDS and HSD patients.

Notwithstanding, there are many of us in the profession who understand the role of exercise therapy in the management of neuromusculoskeletal conditions. Don’t get me wrong, I utilise spinal manipulation when and where it is necessary. But it is about tailoring the plan of management to the patients needs, goals, and their current health status. It can be easy to set the patient up for failure because the assessment wasn’t performed in enough detail, the bar was set too high and the patient is unable to perform phase 1 of any exercise rehabilitation plan. The advice I give to my fellow clinicians when you have an EDS/HSD patient in your clinic, is to take your time, listen to the patient and find a starting point for care/exercise that isn’t going to set the patient back 4 weeks. The road to recovery is long, and when their is no cure, long-term management strategies are necessary!

EDS/HSD Patients Shouldn’t Be Clicked and Cracked

There is much argument and debate regarding the safety of spinal manipulation for patients with EDS/HSD. There are many patients with the condition who receive manipulation from chiropractors, osteopaths, physios and medical doctors to help manage their symptoms. In my clinical experience, spinal manipulation is like Marmite, you either love it or hate it. Another observation of mine is that some patients receive spinal manipulation, and they feel good for it initially, however the benefit they experienced at the start of the care winds down, to the point where the patient only experiences short-term relief, or no benefit at all. Spinal manipulation for some EDS/HSD patients can actually irritate their pain symptoms because of the stretch response to the nerves. Other EDS/HSD patients can gradually develop unstable joints, where the joints are unable to maintain a healthy connection between the joint surfaces of the affected bones. When this occurs, spinal manipulation is no longer appropriate, because of safety concerns. Joint stability is assessed objectively using spinal x-rays at Spriggs Chiropractic providing a more thorough examination of the spine and treatment plans and options will be changes based on the x-ray findings and measurements of spinal motion.

So, other options exist in the Chiropractors bag of treatment options that are safe for EDS/HSD patients? Well, for those patients who do not respond well to spinal manipulation, or who have reached the point where the benefit is short lived, there is a plethora of other options. These are options that can stimulate the right responses from the spinal joints, muscle spindles and the nervous system during the joints normal range of motion. These are options like instrument adjustments using the activator, the Arthrostim® (the woodpecker for my patients reading this) and drop table adjustments3–6. These methods of spinal manipulation provide the same neurological stimulus as “clicking and cracking” the spine without carrying the risks of taking a spinal joint to end range of motion7,8. Therefore, in patients with EDS/HSD, where the joints may be capable of a greater normal range of motion to the point of instability, we can get the same results whilst still working within the safe range of motion of the joint. Check out this previous blog on SMT for more information.

Recognising Symptoms of EDS and HSD

The symptoms of EDS and HSD are diverse and can affect multiple systems in the body. Common features include:

  1. Joint hypermobility: Increased flexibility and a tendency for joints to dislocate or subluxate.
  2. Skin manifestations: Stretchy, fragile skin that bruises easily and is prone to scarring.
  3. Chronic pain: Joint and muscle pain are common, often due to joint instability. Many patients with EDS/HSD are also insensitive to analgesics, even anaesthesia. So unfortunately for some, even if they can tolerate taking the pain medications, some of them are ineffective at dealing with the patients pain.
  4. Gastrointestinal manifestations: Abdominal pain, IBS, food intolerances and sensitivities.
  5. Vascular complications: Some types of EDS can lead to fragile blood vessels, increasing the risk of internal bleeding or organ rupture9.

Diagnosis

Diagnosing EDS and HSD is a complex process that often involves a team of specialists, including geneticists, rheumatologists, and dermatologists. Clinical evaluation, family history, and genetic testing are crucial components of the diagnostic journey. The varied nature of EDS symptoms makes it challenging to identify, and individuals may face years of uncertainty before receiving a definitive diagnosis. It is so important to know what type of EDS the patient has before commencing care, I cannot emphasise this enough to me fellow clinicians. There are types of EDS that are indeed flat out contraindicated for manual therapies. This blog is mainly discussing hypermobile EDS (hEDS) and HSD. Be aware that if the type of EDS is not known, seek referrals to get the diagnosis including the type before commencing care!

Management of EDS and HSD

While there is no cure for EDS, management focuses on relieving symptoms and improving quality of life. Therefore a multidisciplinary approach is required10 including but not limited to:

  1. Pain management: Medications and physical therapy can help manage chronic pain associated with EDS.
  2. Joint support: Bracing and physical therapy/exercise techniques can help provide stability to hypermobile joints. Taping the joints of EDS and HSD patients can also be helpful for pain management. Body orthotics and compression garments can also be used to provide a supportive compression of unstable and hypermobile joints of the body.
  3. Foot orthotics: Fallen arches, flat feet, ankle pronation and ankle instability are common in EDS and HSD patients. On these occasions, custom made or prefabricated foot orthotics can be beneficial for correcting these postural and biomechanical issues for these patients.
  4. Skin care: Gentle skincare routines and measures to prevent injury can help protect fragile skin.
  5. Nutritional Support: Many EDS/HSD patients suffer with many comorbidities, such as IBS, abdominal migraines, malabsorption, and celiac disease. Spriggs nutrition is specialist in this area and frequent co-management of patients is needed in the clinic.
  6. Cardiovascular monitoring: Regular check-ups and monitoring for vascular complications in certain types of EDS are crucial.

Living with EDS and HSD Syndrome

Living with EDS and HSD can be challenging and requiring resilience and adaptation. Support groups, both online and in-person, offer valuable resources for individuals and their families, fostering a sense of community and understanding. As EDS and HSD are often referred to as “invisible illnesses” because much like low back pain, the patient appears to be perfectly normal. What I mean by this, is there are no visible signs of illness or disability on the outside, making it challenging for others to recognise there is any need for support. The EDS Society is a fantastic organisation that offers support to patients with EDS and HSD including access to trained medical professionals who specialise in EDS and HSD. The EDS Society also funds research into EDS and HSD researchers.

Another aspect that must not be overlooked when living with EDS and HSD is to have a multidisciplinary medical team that understand EDS and HSD to support you.

Conclusion

Ehlers-Danlos Syndrome is a complex and often misunderstood set of disorders that challenge the conventional understanding of the human body’s structural integrity. With increased awareness, early diagnosis, and ongoing research, the medical community aims to provide better support and improve the quality of life for those living with EDS. Unravelling the mysteries of connective tissue disorders, we move closer to empowering individuals with EDS and HSD to navigate the challenges and embrace the strength within their unique elasticity.

I hope this blog has been informative and goes some way to recognising that chiropractic has a place in the management of EDS and HSD, however, finding a clinician that is familiar with EDS and HSD is key. Continued research into EDS/HSD and education of clinicians to be more competent in managing EDS and HSD patients is a dream of ours.

By Mark Spriggs DC, MChiro, MSc, PGCE, FRCC.

References:

  1. Yew KS, Kamps-Schmitt KA, Borge R. Hypermobile ehlers-danlos syndrome and hypermobility spectrum disorders. Am Fam Physician. 2021;103(8):481-492.
  2. Smith EMD, Ramanan A V. Fifteen-minute consultation: A structured approach to the management of hypermobility in a child. Arch Dis Child Educ Pract Ed. 2013;98(6):212-216. doi:10.1136/ARCHDISCHILD-2013-303882
  3. Colloca CJ, Polkinghorn BS. Chiropractic management of Ehlers-Danlos syndrome: a report of two cases. J Manipulative Physiol Ther. 2003;26(7):448-459. doi:10.1016/S0161-4754(03)00095-2
  4. Harrison DD, Harrison SO. CBP Technique. 1st ed. Harrison Chiropractic Biophysics Seminars Inc; 2002.
  5. Harrison DE, Betz JW, Harrison DD, Haas JW, Oakley PA, Meyer DW. CBP Structural Rehabilitation of the Lumbar Spine. 1st ed. Harrison Chiropractic Biophysics Seminars Inc; 2007.
  6. Harrison DE, Harrison DD, Haas JW. CBP Structural Rehabilitation of the Cervical Spine. 1st ed. Harrison Chiropractic Biophysics Seminars Inc; 2002.
  7. Evans DW, Lucas N. What is “manipulation”? A reappraisal. Man Ther. 2010;15(3):286-291. doi:10.1016/j.math.2009.12.009
  8. Evans DW, Lucas N. What is manipulation? A new definition. BMC Musculoskelet Disord. 2023;24(1):1-11. doi:10.1186/s12891-023-06298-w
  9. Malfait F. Vascular aspects of the Ehlers-Danlos Syndromes. Matrix Biol. 2018;71-72(2017):380-395. doi:10.1016/j.matbio.2018.04.013
  10. Jacobs JWG, Cornelissens LJM, Veenhuizen MC, Hamel BCJ. Ehlers-Danlos Syndrome: A Multidisciplinary Approach. IOS Press; 2018. Accessed July 13, 2019. https://winkel-ehlers-danlos.nl/wp-content/uploads/2018/09/9781614998785.pdf
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