PRACTITIONER VOICE
Tests : Beighton Score * for hypermobility - 9 / 9 ( excessive movements in all test positions ). Client moved with little stability and loaded her hips and spine with habitual movement patterns . Functional Movement Screen ( FMS ) - 12 / 21 Pain Scale for low back 8-9 / 10 , for neck 6-8 / 10 . (* The Beighton Scoring System measures joint hypermobility on a 9-point scale . The joints assessed are knuckle of both little / fifth fingers , base of both thumbs , elbows , knees and spine .)
Palpation : Frequent bouts of quadratus lumborum ( QL ) spasming
Working diagnosis : Chronic pain , hypermobility associated with Elhers- Danlos Syndrome .
Management and Outcome : The patient was treated over a period of 18 months . We worked from the feet up with physical / manual therapy . This included numerous sessions aiming to offload the compressed loaded areas and aligning / balancing the imbalances :
• joint mobilisation for feet to help pronation and pelvic alignment
• corrections to sacrum and pelvis to help with sacroiliac joints & QLs
• de-compression to lumbars and cervicals to reduce QL spasms and low back pain
• Occupational awareness exercises to counter the daily positions at the bench while working ( assisting neck and hands mostly )
• Qigon / 6 Healing Sounds to help process what came up during sessions and with what was worked on during psychology sessions .
We worked on strengthening from the core out and used breath work to help release the trauma posture and distortions to diaphragm .
• connecting to the body with activation drills and breathing ( Pilates , Foundation Training , somatic breath work and postures )
• Bodyweight training to easily replicate at home and cut back on trainers and number of people in the mix ( at her request ).
Her ‘ homework ’ was :
• time in nature
• barefoot on grass and sand
• no screens in bedroom ( this was a big struggle to let go of !)
• some diet adjustments ( she was quite aware of being coeliac )
• podcasts on mindset and connecting with Elher-Danlos groups
We revisited the FMS screens which include mobility , balance and core . Scores improved progressively with each re-test at 3-monthly intervals ( from 12 / 21 at the start of treatment to 19 / 21 18 months later ).
Pain levels were mostly reduced , with reports of LBP from 8-9 / 10 when she commenced treatment to ¾ , or at worst 6 , when retested 9 months later , and neck pain from 6-8 / 10 to 2 / 3 over the same period even at her work bench . She now rarely used Panadeine Forte or Valium , with a packet now lasting 12 months .
Main measure of progress was number of days in bed . Over a 12-week period we went from several days per week to only pre-menstrual resting for a few hours . After 5-6 months there were no days in bed , even when pre-menstrual . The patient reported an increase in productivity at the bench and doing more things with family after 12 weeks of treatment . She felt “ more Zen ( only really loud noises triggered the startle reflex ), more confident in herself and knew how to relax without medications ”.
Discussion
The patient suffers with Elhers-Danlos Syndrome . Ehlers-Danlos Syndrome can be summarised as a connective tissue disorder . It encompasses the entire body and can affect sufferers in a variety of ways , including joint pain , hypermobility , connective tissues issues , osteoporosis and abnormal scar formation . According to Ishiguro et al ., 1 Ehlers-Danlos Syndrome comprises a series of rare hereditary connective tissue diseases , which is often characterized by musculoskeletal , dermatological , and cardiovascular problems . Diagnosis is based on symptoms and then confirmation is gained with genetic testing . Like most sufferers , this client had a long journey to diagnosis and is continually understanding and learning how far-reaching this disorder is .
Many people suffering chronic pain have an increased risk of mental health problems , 2 and this is also the case with people with hypermobile Ehlers-Danlos syndrome . 3 Anxiety disorders and depression are commonly reported . They are also at a relatively high risk of mental disorders , including mood disorders and suicidal ideation accompanied by pain ( e . g . headache , muscle pain , neuralgia , abdominal pain , malaise ). 1
Although the progress above appears seamless , the main challenge was her mindset . The patient ’ s mental health ( at the time of starting ) was at a delicate stage and the tipping point to start working with me and ‘ try something else ’ was for both self-preservation and her immediate relationships ( husband and daughter ). The patient was and continues to be under the care of a psychologist too .
Having help from many people before starting her current treatment kept her going , but she knew she was simply ‘ existing ’ and for the majority of the time she felt she was in a brain fog from pain medications . Once we started working together , she realised she hadn ’ t been educated about movement options and how to take charge of her life . She had been simply following along what she was told by other practitioners and wasn ’ t doing any ‘ work ’ herself . She also wasn ’ t doing anything at home outside the sessions she attended . We collaborated with a coaching approach which enabled
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