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.

Link to Away with Pain

Summary
The Away with pain website is dedicated to providing information and support to those living with chronic pain. It's a place where people can visit, find comfort and share their experiences if they so wish. Hopefully eliminating some of the fear, frustration, loneliness and isolation that can be felt when living and dealing with chronic pain on a daily basis.

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Webinar: Dr Johanna Theron, Pain Management in EDS and HSD

Presenter
Dr Johanna Theron

Summary
In this webinar, Dr Johanna Theron discusses pain management options for EDS and HSD

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Managing your pain

Author
Dr Johanna Theron, Community Chronic Pain Service, Kent Community Health NHS Foundation Trust

Summary
Dr Johanna Theron from the Community Chronic Pain Service in Kent writes about pain in EDS and ways to manage it

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Webinar: Pain with Dr Deepak Ravindran

Presenter
Dr Deepak Ravindran

Summary
EDS UK Webinar with pain specialist Dr Deepak Ravindran

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The role of medical cannabis in EDS

Author
Sarah Sinclair is managing editor of Cannabis Health

Summary
Sarah Sinclair is managing editor of Cannabis Health and in this article she talks about the tole medical cannabis can play in the management of EDS

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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: Mindfulness

Presenter
Dr Philip Bull, Consultant Rheumatologist and Deputy Chief Medical Advisor, HMSA

Summary
How therapies such as mindfulness and Alexander technique can help manage chronic conditions like EDS.

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Video: Coping with pain and fatigue

Presenter
Dr Chad Shepherd & Dr Netali Levi, Pain Psychologists, The Hypermobility Unit, Hospital of St John & St Elizabeth, London

Summary
A look at how cognitive behaviour therapy (CBT) is used to manage chronic pain conditions such as 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......