Pain in Ehlers-Danlos syndromes

Pain in Ehlers-Danlos syndromes: manifestations, therapeutic strategies and future perspectives: Expert Opinion on Orphan Drugs: Vol 4, No 11 – Marco Castori  – 20 Sep 2016

Introduction: Ehlers-Danlos syndrome (EDS) groups together an increasing number of hereditary soft connective tissue disorders.

Among the most common variants, the hypermobility type emerges as the most problematic, due to

  1. clinical similarities with the joint hypermobility syndrome,
  2. strong association with pain and lack of molecular confirmatory tests.

To date, chronic pain and the related physical disability are the most relevant clinical issues in the long-term management of EDS.  

Areas covered:

A literature review was carried out covering all known pain manifestations, i.e. musculoskeletal pain, neuropathic pain, central sensitization, headache and visceral pain, in EDS.

The natural history of pain, as well as other critical issues, i.e. heterogeneity, clinical approach and evolving phenotype, of EDS are also addressed.

All available data on therapeutic strategies for pain in EDS are extensively reported.

Expert opinion:

Multidisciplinarity emerges as an undeniable prerequisite for the management of the complex EDS patient reporting pain.

All available therapeutic resources, comprising painkillers, physical and psychological therapies, and surgery, show a low evidence of efficacy in the long-term treatment of pain.

Education and early diagnosis are primary resources for secondary and tertiary prevention.

Novel drug therapies could be developed considering the potential role of a dysfunctional extracellular matrix on pain modulation in EDS.

More information on the extracellular matrix and collagen: Collagens in Energy Metabolism and Metabolic Diseases

One thought on “Pain in Ehlers-Danlos syndromes

  1. david becker

    Its like Einstein said- if they knew what they were doing they wouldnt call it research. Unfortunately the egos involved in the research on EDS dwarf Mt Shasta and they lack sober anxiety, humiltas and the moral imagination and motivatinal intensity to get EDS right. With them its always about new schemes to get money to do research- and they are not held accountable for lack of progress in EDS. Heck they arent held accountable for missing data or irreproducible results. Its some racket to be in a professsion where you are not accountable for achieving progress. And what they know already interferes with their learning. So unless there is a radical change in the process of approaching EDS and a change in who is doing the funding and research- i vote no confidence in more blind men looking at the elephant.
    Its time to transfrm the proud and certain research community and hold them accountable for more then just volume velocity and variety of information. Its time for rapid evaluation of research centers and paradigms- if they are not lowering the prevaelnce of illness- its time to stop their funding. We cannot afford in humanitrian terms of fiancial terms a bunch of egotists who believe they are only accountable to others in their epistemic community and not to the larger society.

    Liked by 1 person


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