Hypermobility – Ehlers Danlos Syndrome and gastrointestinal problems

Hypermobility is common and is certainly a feature that we often see in patients at the clinics. Some patients have been diagnosed with hypermobility but do not know what it really means and need clarification, some are suffering aches and pains that are limiting and troublesome and still others visit with chronic pain and hypermobility is seen at the assessment.

See hypermobility blogs — blog 1 — blog 2 — blog 3

I always begin with an explanation that includes pointing out that many top athletes are hypermobile and hence there can be advantages. Per se, hypermobility is not necessarily a problem and in fact many who come for advice do not have any significant issues. They may need a programme that includes spatial awareness training, balance and proprioceptive exercises, but in essence, they can continue as normal.

Those patients who suffer pain and on-going pain, often widespread, require a different approach that considers the pain source and the influences upon pain. The training will include proprioception and spatial awareness exercises, but the baseline start point will be different. Before this even, there is often a need to tackle the sensitivity in several ways, termed top-down and bottom-up. Top-down refers to how we can target the brain including education, strategies to deal with thoughts that create anxiety and adaptations to the body maps that change our body sense and experience. Bottom-up is the use of the body tissues to change sensory processing and hence pain and sensitivity. There are many ways of doing this, and altering the combinations of the top-down and bottom-up  strategies creates potent ways of tackling pain.

Frequently, those who suffer persisting musculoskeletal pain will also bare pain through other body systems, especially the gut. See this recent review:

Functional digestive symptoms and quality of life in patients with ehlers-danlos syndromes: results of a national cohort study on 134 patients. Zeitoun JD et al.

Abstract

BACKGROUND AND OBJECTIVES:

Ehlers-Danlos syndromes (EDS) are a heterogeneous group of heritable connective tissue disorders. Gastrointestinal manifestations in EDS have been described but their frequency, nature and impact are poorly known. We aimed to assess digestive features in a national cohort of EDS patients.

METHODS:

A questionnaire has been sent to 212 EDS patients through the French patient support group, all of which had been formally diagnosed according to the Villefranche criteria. The questionnaire included questions about digestive functional symptoms, the GIQLI (Gastrointestinal Quality of Life Index), KESS scoring system and the Rome III criteria.

RESULTS:

Overall, 135 patients (64% response rate) completed the questionnaire and 134 were analyzable (123 women; 91%). Mean age and Body Mass Index were respectively 35±14.7 years and 24.3±6.1 kg/m(2). The most common EDS subtype was hypermobility form (n=108; 80.6%). GIQLI and KESS median values were respectively 63.5 (27-117) and 19 [13.5-22]. Eighty four percent of patients had functional bowel disorders (FBD) according to the Rome III criteria. An irritable bowel syndrome according to the same criteria was observed in 64 patients (48%) and 48 patients (36%) reported functional constipation. A gastro-esophageal reflux disease (GERD) was reported in 90 patients (68.7%), significantly associated with a poorer GIQLI (60.5±16.8 versus 75.9±20.3; p<0.0001). GIQLI was also negatively impacted by the presence of an irritable bowel syndrome or functional constipation (p=0.007). There was a significant correlation between FBD and GERD.

CONCLUSIONS:

Natural frequency of gastrointestinal manifestations in EDS seems higher than previously assessed. FBD and GERD are very common in our study population, the largest ever published until now. Their impact is herein shown to be important. A systematic clinical assessment of digestive features should be recommended in EDS

It is routine in our clinic to ask about other body systems as this tells us a great deal about the level and type of sensitivity, which in turn guides the comprehensive treatment and training programme.

Increasingly, patients are being referred for irritable bowel syndrome and other functional pains (e.g./ migraine, headache, chronic back pain, chronic joint pain, pelvic pain, vulvodynia). Due to the underpinning sensitivity residing within the central nervous system — this is not a disease but rather an adaptation; neuroplasticity at play — we can target these mechanisms with a range of effective strategies to re-learn or re-programme the way in which the neuroimmune system is expressing itself. These systems are fundamentally designed to change, learn and grow. They simply need the right conditions to do so, and all too often there is a belief that a situation cannot change and hence all the choices and behaviours prevent any form of forward movement. This is just not true and through our understanding of the body systems and their adaptability, we are creating increasingly effective and diverse ways of tackling pain and suffering.

If you have been diagnosed with hypermobility or are suffering with chronic pain, call us now to discover how you can change your experience and move on: 07518 445493 — Specialist Pain Physio Clinics in London: Hypermobility Clinics

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