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Managing Multiple Chronic Pain Conditions: How the Power Over Pain Portal Supports Understanding, Coping, and Thriving

This is a story of resilience and discovery as one individual navigates life with six chronic pain conditions, autism, ADHD, and a learning disability. Through the Power Over Pain Portal, they find tools to better understand their pain, improve sleep, manage nutrition, and incorporate movement into their routine.

My pain story 

I have six different pain conditions: endometriosis, Crohn's, osteoporosis, congestive heart failure, asthma, and painful bladder syndrome. I also have autism, ADHD, and a learning disability. 

How has the Power Over Pain Portal helped me 

The Power Over Pain Portal has really helped me understand not only how my pain interacts with my body, but also how things like sleep and nutrition interact with my body. It’s helped me understand pain as well and how important it is for me to get eight hours of sleep, for example, and how important it is for me to eat properly. For example, I'm on two different diets – one for Crohn's and one for congestive heart failure. I'm trying to work in another one for reversing prediabetes. Healthy food is helpful. I also really like the webinars that you have on the Portal, because I'm always looking for new research on chronic pain or new ways or strategies to do things differently with my body for the pain, or just hearing other people’s stories of living with pain – I learn from them. Their stories are helpful. 

How I heard about the Power Over Pain Portal 

I heard about the Portal when I got diagnosed with congestive heart failure. One of the nurses said, you might want to go to this [Power Over Pain Portal] and find out more about the chronic pain associated with your other conditions. At the time I was having trouble sleeping due to the medications for my congestive heart failure. The nurse suggested I might find tips on sleeping with pain. Using the search filter, I found workshops on sleep and chronic pain! There were workshops, and I also found a course on sleep, which I took. It really helped. I had no idea that I had to have sleep hygiene before I went to sleep! I applied the strategies they recommended and now I'm sleeping better! The other thing I used on the Portal was physical activity resources. I have problems with scheduling movement/exercise and doing it. And with ADHD, movement is important. But I don’t like going to the gym; I find it boring. I found simple stretches on the Portal and started doing them regularly – I even set my alarm as a reminder to move. Then I started walking in the ravine for 10 to 20 minutes. It’s recommended to get 150 minutes of exercise a week; I try to do that, but sometimes it doesn't always work. The other thing that I learned about in the course was pacing. I'm not good with pacing. I need to make sure I have enough energy for my entire day – you only have so many spoons, right? You have to know how to allocate them. For those who don’t know about the spoon theory, say you have five spoons (represent energy) and the big things in your day take up a lot of energy (spoons) so with six chronic pain conditions and autism, if I’m having a bad day, maybe that takes three spoons. There aren’t many left to do things in my day. Pacing and prioritizing become very important. Learning to manage your spoons so that you can get them back at the end of your day, you have to learn what helps you recharge your energy. I have to go for an MRI. Because I don't like needles that's going to be a big thing. So that's one spoon right there. So that means I have two spoons left for my day for anything else that's going to take energy away from me. When I want to recharge, I go play with my degus. 

What advice I would give to people interested in using the Power Over Pain Portal 

The best suggestion I can give people who are interested in exploring how to get the most out of the Portal is to look at everything first. You don’t know what’s there until you look at everything. Look at the resources. Make an account. Check out the courses. If you see topics you like (in Resources or courses), click on them. If you like mindfulness, click on all the mindfulness resources. Spend a couple of hours and explore the Portal. You might not have thought about those connections with pain. Another thing that helped me was keeping a notepad open on my computer and keeping track of what I did on the Portal so that when I returned to it at a later time, I knew where to go. 

Future suggestions for the Power Over Pain Portal 

Another resource that I really liked was the mindfulness and pain. I’d like to see something on neurodivergence and chronic pain. For someone like me, I found the Portal easy to read. And hopefully you won’t need it, but there’s also a red button on the menu bar if you need support right away. Take your time. Pace yourself and enjoy what the Portal has to offer to help live with chronic pain. 

Thank you for providing an opportunity for me to share my experience of living with pain. 

Kim L.