Pain is one of the most common struggles for people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD).
EDS and HSD can cause both acute and chronic pain.
- Acute pain occurs suddenly and is usually caused by something specific, like an injury.
- Chronic pain is more persistent, lasting longer than 3 months.
There are many ways to manage pain, and there is no one standard approach for managing pain in people with EDS and HSD. Everyone’s experience with EDS and HSD is different, and the success of pain management strategies varies.
Trial and error are often required to find a combination of approaches that work for each person. People with EDS and HSD often rely on multiple pain management strategies to reduce their pain. A single management strategy may only reduce pain by 10%, but five equally successful strategies could lead to a 50% reduction in pain. A mix of approaches is often required to achieve the most symptom relief.
Approaches include:
Movement
Movement improves muscle strength, which can help stabilize hypermobile joints. A physical therapist can help you with a movement plan that is appropriate for you.
Manual Therapies
Some physical therapists use gentle hands-on techniques to help reduce pain and improve functioning.
Manual therapies include:
- Joint, muscle, and nerve mobilization
- Joint manipulation
- Myofascial release
- Trigger point therapy
- Strain counterstain
Assistive Devices
Assistive devices are tools that make it easier for someone to perform a specific task. People with EDS and HSD may use assistive devices, such as:
- Braces
- Splints
- Mobility aids
- Supports
- Adaptive tools and technology
Medications
Medications can be helpful tools for managing pain in EDS and HSD. There are a variety of medications that can help with pain relief.
Lifestyle Changes
Certain lifestyle changes can help reduce pain, such as:
- Pacing to conserve energy
- Modifications to make activities less painful
- Improving sleep habits
- Stress reduction and relaxation techniques
Mental Health Support
Chronic pain can contribute to anxiety and depression. Cognitive behavioral therapy and mindfulness practices can help people with the impact of chronic pain.
Resources
Our YouTube channel has a lot of great videos about managing EDS and HSD, including playlists about pain management, physical therapy, emotional well-being, and more playlists that you may find useful.
For more ideas about pain management and support, you can also join our Let’s Chat: Virtual Support Groups that take place several times a month on Zoom.
We also have a great online community on Inspire that has an Android and iOS app or can be accessed via a web app. People in these groups often discuss what works for them, and you can search for conversations around keywords or topics that are relevant to you e.g. hand pain, on Inspire.
You can also contact our helpline where you can ask questions about pain management.
