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.
