Kristi: Hello everyone, my name is Kristi Oen and I am a CRPS Conqueror and the founder of P.A.I.N. Help. And today I am here with Emily and she is helping talk about mindfulness and how powerful and potent a tool that is when you are dealing with your chronic illnesses.
So Emily, why don't you tell everybody a little bit about you and how this came to be, us getting together.
Emily: Sure. So I've been chronically ill now for about 10 years, and mine started with some autoimmune issues. I was diagnosed with Lupus back in 2011 I believe and things just kind of snowballed from there.
I developed CRPS in 2015, it was following a very minor injury. I fractured my small toe and went to the emergency room and of course they told me -- in four to six weeks you'll be totally fine. Nine months later the bone had still not healed and the pain was just getting worse and worse and worse. And of course my foot was changing colors, all shades of blue and black, and really could not figure out what was going on. So I went to lots of different doctors and thankfully a podiatrist sort of figured it out and he suggested that this might be CRPS.
So I've been dealing with that for the last few years and thankfully mine's in remission right now. So I am one of the success stories along with Kristi.
But it was really difficult in the beginning, definitely. He actually told me go home and Google CRPS, which I wouldn't recommend to anybody, because I read horror story after horror story after horror story and read that it's even nicknamed "the suicide disease." And I was just totally panicked. So I was really worried about what this meant for my future and if I'd be able to walk again and all that.
Thankfully my rheumatologist who was treating my lupus recommended I see a pain doctor over at the Cedars Sinai Pain Clinic. I live in Los Angeles. I really appreciated their approach to treating chronic pain, because, not only did I do the medications and the nerve blocks and all of that, but they also recommended that I see a pain psychologist. He really helped me understand the more emotional aspect of the pain and how to cope with that and he brought in the mindfulness training and biofeedback and that really helped me a lot. Thankfully that helped and we'll get into all of that in more detail.
I also developed POTS since then too, so I've been dealing with that too -- and Ehlers-Danlos Syndrome. So it's a whole cluster of syndromes that tend to kind of go together that I have going on
But thankfully things are going much better recently and the mindfulness has been a big part of my healing.
Kristi: That's great. And that's really what we want to talk a lot about today is using that mindfulness, because I am a big fan of it as well and finding that meditative state, using the breathing.
I thought it was really cool, I'll link up your article too that I found. It's how I got in touch with you, I found your article through the RSDSA. There are things that we know and we feel, like when we have high emotions, our CRPS gets much worse. But it was really cool how you got some validation from that, if you want to talk about that?
Emily: Yeah. I mean, one of the things I noticed before I was even diagnosed was that when I was kind of in a high emotional state when I was having a really bad pain day and just feeling really frustrated or angry about that, I could actually visually see the inflammation in my foot getting worse and I actually could see it spreading to my right foot.
Yeah, it was pretty remarkable.
When I finally got into the right doctor who could treat my condition, she kind of confirmed what I had observed on my own, was that...
when we're in this really high emotional state, when our sympathetic nervous system is really activated, it does lead to an increase in the neuroinflammation.
So it was sort of interesting and validating to hear that, but also a little frustrating, because then I was thinking -- wait, am I feeding into this, am I causing this?
And she reassured me, no, absolutely the illness is not your fault, you did nothing to cause it. But, our emotional state actually can feed into the illness.
So she told me just don't worry about the pain. And of course I laughed in her face because how can we not worry about it? So that wasn't very helpful to me.
So that's where the pain psychologist came in and he was able to really work with me on like, how do I not worry about this? How do I calm my fear about the future, my anxiety about this illness? Because when you have a condition like CRPS, you feel very out of control of your body and you can feel very angry at your body. And all of that is very, very anxiety provoking. And that's 100% normal to feel all those things. Certainly I felt all of that when I was diagnosed.
So the mindfulness can really help to kind of like calm that emotional state. And we're human and we can't avoid feeling anxiety and fear and anger and all those emotions, but with mindfulness training we can try to not stay there for too long, just kind of acknowledge that we're feeling those things and let it pass.