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Participating in Research...

I was curious when the HMSA and EDS UK shared a call out for participants in a study to evaluate the effect of mindfulness meditation on pain. I met the criteria and passed the initial survey with my willingness to commit to listening to a six minute mp3 recording, one to three times every day for 2 weeks. Emails soon followed introducing mindfulness practice as focussing on the present in an open and accepting way. Clear easy instructions, a simple mp3 recording with a lovely voice (if a little quiet), check-ins and feedback requests that made me feel a valued participant. I experimented with different times of day, trying to fit it into daily life already busy with self-management. For me, I found listening to the guided mindfulness meditation most helpful when transitioning between morning brain activity doing life admin, to more physical activities, making it easier to implement pacing and other pain management techniques that can prevent things worsening. Again, later in the day to rest and relax, getting comfy is always a challenge, but with multiple plays of the mp3 and deep relaxation I was able to relocate a stubbornly subluxed shoulder! My interoception, sensing pain before it becomes intense, is not great. Becoming more aware of thoughts, feelings and sensations, bringing attention to my whole body with mindfulness has been a challenging and useful skill. I have learnt to weave moments of breathing and grounding myself in the present all through the day. Checking in with my body, calming my thoughts, emotions and possibly my perception of pain.


Karen Merryweather


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Also ... for those wondering how you can learn these techniques, I (and my rheumatologist) highly recommend paintrainer.com. I live in a rural region with no pain psychologists. This online resource is evidence-based and very helpful (for me).

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In my experience, what works for you works for you. Every strategy needs to harness your own strengths and assets. I could not get my mind to focus on an envisioned scene no matter what. I myself created my own behavioral response for what to do when a pain flare strikes. I used to get anxious and worry that this will never get better. Now, I try to interrupt that behavioral pattern and say, hey this is today. Breathe. Put on your CMC brace. It brings comfort. I move on.

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There are pros AND CONS for us HSD/EDS folk with minfulness and meditation.I have been teaching Yoga and Breath Awareness for 30 years and there are specific issues to take care of with hypermobile people and their symptoms. In brief, being still for any length of time for relaxation or body scan, meditation etc. Awareness through movement can be more helpful often. DISTRACTION dare i say it works. Despite Yogas focus towards concentration and meditation as laid down in Patanjalis yoga system, modifications are required to suit the individual flux. For mental and emotional response to pain then these methods can lead to a minimization of pain but there certainly are limits. We need to take care not to exacerbate…

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Hi Nic, I also have distraction and gentle movement in my pain management toolkit! The research results show the range of responses from the community, with this specific type of mindfulness being really helpful for some but not all! :) https://www.tandfonline.com/doi/full/10.1080/09638288.2022.2140843

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Agree with Alison, I've tried and found helpful a lot of these strategies. One of the best has been Kim's Monday Relaxation sessions, I'd recommend any members give one a try.

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I've had great success with various psychologically based pain management strategies - progressive relaxation/breathing, intentional distraction/thoughts. Life changing for my hypermobility-induced osteosrthritis

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