Hyper Mobility Syndrome - The Osteopath's Point of View
By Belinda Eyes D.O.

My experience of treating patients with Hyper Mobility Syndrome (also known as Ehlers Danlos Sydrome type 3) has come, initially, out of ignorance and necessity, due to having a patient who initially came to me with a lower back complaint in 2000. I treated her on off for the next three years, and then continually through her two pregnancies in 2003 and 2004, during which time she developed one of the most severe cases of Symphasis Pubis Dysfunction I have ever seen. The problems in her back unavoidably worsened, and her recovery after the arrival of her second child was not what we would have hoped. She was eventually diagnosed with HMS in 2007, a condition that, at the time, neither of us had really heard of. Inadvertently however, between the two of us, we had already begun to create an effective treatment programme for her, mostly through trial and error.

The patient in question has since become a member of staff in my practice, and together we have gathered as much information as possible about HMS and its co-morbid conditions such as Fibromyalgia, Chronic Fatigue, IBS and Raynaud’s Syndrome. What has become clear is that there is a huge lack of awareness and understanding of the condition, and that the most important thing for both patients and clinicians to be mindful of is that successful treatment will, certainly in the beginning, involve a large amount of experimentation.

Hyper Mobility Syndrome is a very under-diagnosed condition, and largely misunderstood in the medical profession and indeed among patients as well. This is not surprising considering the range of tissues that can be affected, and hence the diverse range of symptoms reported. The underlying cause is in the genetics of the patient – the collagen that makes up all the body’s soft tissue is too elastic, allowing, amongst other things, too much movement in joints. For a more detailed explanation see "Hyper Mobility and Hyper Mobility Syndrome - What are they and What's the Difference Between them?"

Because individual sufferers can present with a very broad range of problems, there really is no standardised, ‘one treatment fits all’ treatment plan, an issue which is often problematic when patients are referred within the NHS. There seems to be a necessity within the mainstream system to compartmentalise each condition and have no allowance for the individual differences presented, a problem particularly highlighted by HMS. No two patients will ever present with the same set of complaints, and each patient will be experiencing different levels of tissue movement and joint laxity, with some joints already technically “beyond repair” by the time a patient reports to their GP.

Effective treatment needs to be tailored to the patient’s individual issues, and of course take into account the patient’s level of activity (which may be limited by the level of disability being caused by the condition), lifestyle and commitments, plus any injuries and/or operations that may have occurred.

The treatment approach that I have found most successful with my initial patient and others since, is one that combines the holistic teaching of Osteopathy with making sure that particular attention is paid to which ever area seems to be causing an issue at the time. The nature of condition means that long term patients themselves become quite expert at identifying the root causes of particular problems, even if they cannot do anything themselves to relieve them; my colleague/patient now fully expects treatment to focus on her lower back when she complains of increased leg pain, and knows that movement pain in her left hand is attributable to a problem that has developed in her shoulder. The nature of the condition means that it is very easy for problems to “spread” as the body’s natural instinct to compensate for the area causing pain quickly puts stress through healthy areas. The HMS body damages far more quickly than a typical one, hence the need to focus on the area of particular concern during treatment, while retaining the holistic approach with regard to the rest of the body.

Sometimes, quite strong treatment has to be employed, such as the necessity of keeping the upper back and ribs moving. This requires sporadic manipulation (High Velocity Thrust / HVT) to the thorasic spine, as well as always working into the soft tissues to stop a build up of tension which will then compound the problems of excessive mobility in one area, and then very limited mobility in the surrounding joints and tissues.

In short the aim is to keep consistency throughout the muscles and spine and not let any one area take the strain too much, which would of course cause an overstrain of the ligaments which are already compromised.

It is of course vital to always keep in mind the possibility of joint laxity when treating an HMS patient, especially when working on the neck. However I have found the biggest difference to remember when treating an HMS patient is their tolerance level. Treatments need to be shorter than with other patients in order to mitigate the inflammatory response, and hopefully keep it on a par with a response I would expect a non-hypermobile patient to experience. Too much treatment, ie too long a session, can make the effects of treatment far too painful, and runs the risk of putting the patient off further treatment. The same principle can and should be applied to any kind of exercise programme that might be suggested.

In conclusion, my experiences in treating my colleague/patient, and a number of other hyper mobile patients that I have seen over the last decade or so, have led me to believe the 'Osteopathic' approach is one that is particularly suited to treating HMS patients, as our detailed knowledge of the musculo-skeletal system, combined with the holistic approach, seems to generate by far the most positive results the patients themselves have experienced. Additionally, offering a “little and often” treatment plan, and being honest with the patient in admitting that HMS reactions to treatments can be highly unpredictable and varied, and therefore an ‘expected outcome’ cannot be given, has, in my experience, helped significantly in improving the patient’s emotional attitude and frame of mind regarding their condition, and encouraged acceptance of limitations in outcome. While admitting that treatment may involve a certain amount of trial and error may on the face of it appear a little unprofessional, these particular patients respond well to that level of honesty, primarily because the treatment protocols they have already been through via the NHS have been inappropriately prescriptive and dictatorial, and, in too many cases, the patients have found themselves educating the clinicians about the condition, often in meetings that become confrontational and stressful. Understanding and patience on BOTH sides, and osteopathic knowledge of the mechanics of the musculo-skeletal system combine to offer the patient, in my opinion, a genuine chance of successful management of a highly complex condition.