Pain

Chronic pain in the Ehlers–Danlos syndromes, especially in hypermobile EDS, is very common and may be severe. It may be widespread or it may be limited to one area of the body such as a limb. Headaches and gastrointestinal discomfort can occur as well as joint, muscle and nerve pain. Management strategies include physiotherapy, medication, and sensible use of medical equipment such as splints and braces.

Fibromyalgia and chronic fatigue

Author
Dr Alan Hakim, Consultant Rheumatologist and Professor Rodney Grahame, Consultant Rheumatologist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London

Summary

An examination of the chronic pain and fatigue than can accompany hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders, and what can be done.

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Video: How to manage pain

Presenter
Dr Jane Simmonds, Lead Hypermobility Physiotherapist, The Hypermobility Unit, Hospital of St John & St Elizabeth and Senior Teaching Fellow, UCL Great Ormond Street Institute of Child Health

Summary

Coping with long-term pain in EDS.

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Video: Hypermobility, fibromyalgia and EDS

Presenter
Dr Alan Hakim, Consultant Rheumatologist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London

Summary

Chronic pain syndromes in hypermobile EDS.

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Video: Chronic fatigue and fibromyalgia

Presenter
Dr Alan Hakim, Consultant Rheumatologist, The Hypermobility Unit, Hospital of St John and St Elizabeth, London

Summary

Long-term pain and fatigue syndromes in hypermobile EDS.

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Video: Management tips in EDS

Presenter
Dr Hanadi Kazkaz, Consultant Rheumatologist, University College London Hospital

Summary

How to deal with pain and other symptoms in hypermobile EDS.

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Link to The British Pain Society

Summary

The British Pain Society advances the understanding and management of pain. Its publications provide expert guidance to patients and are supported by the latest evidence. You might find of particular help their popular booklet 'Understanding and Managing Long-Term Pain', details of how to request a free hard copy can be found by following the link.

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Link to A Path Out of Pain

Summary

A website to help people living with fibromyalgia and other chronic pain conditions using a self-management approach.

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Link to The Pain Toolkit

Summary

A toolkit of pain management skills to enable people living with persistent pain to become active self-managers.

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Link to Pain Concern

Summary

Pain Concern is a charity providing support and information to people with pain and those who care for them. As well as raising awareness about pain and campaigning to improve the provision of pain management services, they run a helpline and offer a forum for members to share experiences.

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What is EDS?

Information sheets, how to get a diagnosis, advice for medical profesisonals......