For many people with hypermobility, chronic pain can make life difficult.
While the scientific understanding of pain and pain processing has come a long way in the past decade, the treatment of chronic pain, and especially the chronic acute pain that many people with hypermobility experience, seems to still be an area of difficulty for many doctors.
I’ve struggled to find good care, struggled to find doctors who take the pain I experience and the impact it’s had on my life seriously, and struggled to make peace with the fact that my life is on a different trajectory now.
The resources I list here have by no means “cured” my pain. They have, along with other treatments, increased my quality of life and improved the way that I deal with my pain. As always, knowledge is power, and I think that as patients, the more we understand our pain, the better off we are!
And while I’m super excited to share my experiences and resources I’ve found helpful, don’t forget, this is for informational purposes only – this is not medical advice. Before starting any new treatment (physical, medicinal, or psychological), consult with a qualified physician.
If you don’t want to scroll through the whole page to see all the videos, check out the Pain Management Resources Playlist I made on YouTube.
Ehlers-Danlos Society Research
A good place to start to understand pain and its relationship to hypermobility is with two articles from the 2017 International Consortium on Ehlers-Danlos Syndrome. The Ehlers-Danlos Society has copies of the works on their website:
Pain Management in the Ehlers–Danlos Syndromes
Psychiatric and Psychological Aspects in the Ehlers–Danlos Syndromes
Free Online Courses
Mindfulness for Wellbeing and Peak Performance by Monash University (FutureLearn.com)
- I took this course in 2018, but “Most FutureLearn courses run multiple times. Every run of a course has a set start date but you can join it and work through it after it starts.”
- They offer an “upgraded” version that you can pay for; I took the free version and didn’t feel like I was missing anything
Cognitive Behavioural Skills to Treat Back Pain: The Back Skills Training (BeST) Programme by the University of Oxford (FutureLearn.com)
- I’m in the May 2019 course, but “Most FutureLearn courses run multiple times. Every run of a course has a set start date but you can join it and work through it after it starts.”
- The course is geared towards clinicians learning how to give/proctor the BeST Programme, but I’m learning a lot, and I think it’s good to try to see things from the practitioner’s point of view, too
- They offer an “upgraded” version that you can pay for; I’m in the free version and it doesn’t feel like I’m missing any important information
Integrating Care: Depression, Anxiety and Physical Illness by King’s College London (FutureLearn.com)
- I haven’t taken this course yet, but it looks super interesting! The next run is in September 2019, but “Most FutureLearn courses run multiple times. Every run of a course has a set start date but you can join it and work through it after it starts.”
Short(er) Videos
Some of these were recommended to me by a pain psychologist who worked mostly with mindfulness to manage chronic pain, others I’ve found on my own.
Elliot Krane: The mystery of chronic pain
I think this is a very good explanation of how pain can go unexpectedly wrong. The example he uses is when a relatively minor injury becomes a major chronic pain issue. I think people with chronic illness experience chronic pain a bit differently than in his example, but the information is still relevant.
TEDxAdelaide – Lorimer Moseley – Why Things Hurt
I found this speaker super engaging while thoroughly explaining a pretty dry, scientific process.
Vidyamala Burch, Breathworks and mindfulness-based pain managment (full interview)
I had been extremely skeptical about mindfulness and pain, but this speaker really helped me see potential. It was really powerful to hear from someone who actually has chronic pain, as opposed to a non-spoonie trying to tell me how to be when they have no way to relate to what my life is like. It’s a pretty long video, but I think worth the full listen.
How does your brain respond to pain? – Karen D. Davis
Cute little animated TED-Ed. Probably a little oversimplified, but a good overview!
Understanding Chronic Pain
A little dryer than the TED-Ed animated video, but full of lots of good information. I think they do a good job of distinguishing acute and chronic pain.
A Different Approach To Pain Management: Mindfulness Meditation | Fadel Zeidan | TEDxEmory
A little more information about mindfulness and pain management
Chronic Pain Partners – EDS Awareness Webinars
Chronic Pain Partners is an amazing nonprofit organization that has created the EDS Awareness program. They have an extensive library of webinars about many aspects of EDS, hosted by physicians and other knowledgeable professionals. I strongly recommend going to their website and checking out all of their videos, especially for specific pain problem areas you have, but I’ve included their most overviewing webinars here.
These videos all tend to be very long presentations. I usually skip the first few minutes to get past some of the repetitive introductory material. However, please do pay attention to their disclaimers!
Dr. Pradeep Chopra
These are Dr. Chopra’s two most recent webinars on pain management in EDS.
He also has two older webinars on the Chronic Pain Partners website:
Dr. Forest Tennant
This video is a little older, from 2015, but I think it still as a lot of relevant information about pain, and specifically how it manifests in EDS.
Dr. Norman Marcus
This one is a little newer, 2016. Still lots of relevant information about what pain is.
Somatic/Movement Approaches
Feldenkrais Method
Feldenkrais Method is a mindfulness based exercise program. My first experience with Feldenkrais was when I was living in Hawaii. It was the first exercise in a long time that I felt like I was capable of doing. I was nervous at first, but when I shared with the teacher that I was hypermobile and wanted to be careful, she was right there with me because it turned out that she was hypermobile too! That won’t be the case with every practitioner, but I still recommend the Feldenkrais Method to everyone!
Learn more and find practitioners here:
Feldenkrais_Method (overview on Wikipedia)
Awareness Through Movement by Moshe Feldenkrais (book)
The Busy Person’s Guide to Easier Movement by Frank Wildman (book)
Chronic Pain Partners (EDS Awareness) Webinar: “The Feldenkrais Method and other Somatic Approaches to Improve Function and Ease”
This is a super long video, but it’s hosted by an amazing nonprofit organization known as Chronic Pain Partners that has created the EDS Awareness program. They have an extensive library of webinars about many aspects of EDS, hosted by physicians and other knowledgeable professionals. I have linked to some of their other webinars elsewhere on this page, but I wanted to include this one here!
Aquatic Therapy
I lucked into an excellent aqua therapy program in Hawaii. The instructor never pushed anyone too hard and let things be very self-paced. I loved splashing into the pool and feeling the pain slip away. My instructor explained that being in water helps with pain because the increased sensations can overwhelm and distract your brain from its usual (probably malfunctioning) pain processing activities.
I don’t know of any scientific studies supporting this concept or the use of water as a pain management treatment, but I’d recommend finding a class if you can. And if you go to one and find it’s too intensive for you, try a different one. Not all “water exercise” classes are the same, and it would be better to find one geared towards people recovering from injuries, or with an instructor who respects your limitations.
Pilates
Another great Chronic Pain Partners EDS Awareness Webinar:
Yoga
You can read my blog post about a scientific study linking a yoga protocol to reduced lower back pain.
Other Books & Articles
The Mindfulness Solution to Pain by Dr. Jackie Gardner-Nix
The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Norman Doidge