Join Michael and Carla in discussing One Thing they want pain researchers or clinicians to know.
About Michael and Carla
Michael and Cara are parents who faced the frustration of standardized care when seeking help for their child’s chronic pain. “We wish we knew then what we know now”… They urge clinicians to truly understand each patient’s unique experience and tailor treatment accordingly.
Transcript
Joshua Pate: What is one thing that you want pain researchers or clinicians to know?
Carla: That not everyone is the same and like a lot of symptoms, can’t be put into a standard box, I would say.
Michael: Yeah, and on our little journey I think we’ve learned specifically for ours, it may sound a little bit weird, but it’s almost a non-medical solution that we’re pursuing. In that there is no magic pill, there is no magic… you know… I think you’re coming to all that, you know when you first enter the pain world, you come into that space thinking, you know, we’re used to a medical solution, a tablet, or a remedy, or something like that, a fix it, and I guess…
We have, yeah, have seen and been in places with a lot of you know, children, adolescents, and even and then older people in pain. And although they can present with similar symptoms. Yeah, no two are really exactly the same, and therefore I believe there all the treatment needs to be tailored in a really specific way for them. Not really a box solution as I guess medical practitioners ultimately trying to do to eliminate and do that process. So you know, that’s my version. Yours?
Carla: Very few people really understood how to way to go when Georgia started to present those initial symptoms, it was all very much about the diagnosis of, for her, CRPS. The months leading up to that after initial injury. Had we known what we know now about that… If we had have been able to get onto some things that have helped earlier in those early months. I think her picture could have looked a lot different. But at that time, we knew nothing about chronic pain. A lot of the medical doctors couldn’t advise us. They told us it’s all in her head. “Good news her MRI come back normal”, like for us that’s not good news. If it had been a break it would have been so much more simpler than what we’ve had to endure and navigate and work out, and know who to trust, and what advice to take on, and what advice not to take on.
I think in the health world in Australia it’s very, it’s super hard, you know. The health professionals are stretched with a lot more simpler cases. So to have something that very few people understand, it comes down a lot to following your gut and knowing what is right and what isn’t right, what feels right, what doesn’t feel right, what advice to take on and what not to and from an uneducated perspective outside the medical field, it takes a lot of courage to voice that opinion, and to know what works and what doesn’t, and communicate that, and be comfortable and confident, because you question yourself every day whether we’re doing the right thing. Is this going to have an adverse effect? Should we follow this advice? Should we not follow this advice?
And then anybody who has chronic pain… They connect, and they want to give you all this advice on what’s worked for them, and it can be such a ‘washing machine’ of overload, and it just becomes too much and too consuming and just like “Oh, my gosh! How do you even break this down?” And I feel like that overload for us, certainly in our experiences with Georgia, it’s been too much. Like, we have tried so much, and in this desperate attempt to get her better taken on so much advice. And it’s almost like we’ve communicated to her “We’re not going to stop fighting until you’re better”. So it’s like that focus on the symptoms. It’s like chase for the answer, and that continual… I don’t know. Just giving it everything to get her back to functioning and pain-free. And it’s almost in our case that concentration and that attention to the pain and her symptoms… It’s just fueling that fire. We’ve learned that distraction is key for her, and it’s a really fine line between validating her pain, but also helping her to move forward. Because we know it’s real. We absolutely know it’s real. We see it. We, my goodness, like the things that we see behind our doors… I wish some of the health professionals could see it, because often it’s a very different story when Georgia is in front of them.
Josh: Well thank so much for your time today, we really appreciate it.