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.
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
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
Webinar: Pain with Dr Deepak Ravindran
Presenter
Dr Deepak Ravindran
Summary
EDS UK Webinar with pain specialist Dr Deepak Ravindran
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
Link to The Pain Toolkit
Summary
A toolkit of pain management skills to enable people living with persistent pain to become active self-managers.
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.