Clincially Proven Mindfulness Tips from Emily another CRPS Conqueror
Posted on April 19, 2019
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.
Emily Nunez and Kristi Oen CRPS Conquerors talk about Mindfulness
Kristi: Exactly. The way that I kind of think about it is like you take it on. 


 I used get lots of anxiety and panic attacks because I take it on and kind of spiral and get in all that junk. And the mindfulness has gotten me to the point where it's like stop, back it up, I don't need to fall down that hole. It's a different way of just -- you controlling some of it.

 I love what you said about how it's not your fault. Because since I was a small child -- because I've had mine since I was 10 -- I was told that that pain was in my head. And then every doctor you see... I wasn't diagnosed for 25 years, so for 25 years, any doctor that I brought it up to, most of them said, you need to go see a psychologist. But they thought it was because I was crazy. Unlike you going to a pain psychologist, which I'd never heard of, which is an unbelievably wonderful thought that somebody actually cares and acknowledges and believes my experience and my pain.

 For people to know that it's not your fault, I love that you said that it's not your fault, but we can take some control back. So that's what this video is about is, is about teaching people to take control back.

Emily: Yeah, I think that's something that's actually really reassuring about all this too, because so much of it feels out of your control and it's not your fault that you got this.

 I do find comfort in the fact that there are some things that I can control. I can control how I treat my body, I can control practicing mindfulness and doing whatever I can to kind of keep myself in a calm state. It is nice to have something that you can do to kind of combat the severity of the pain.

 Something that the pain psychologist talked to me about was kind of the relationship between pain and suffering. So pain is of course the physical sensations that we're feeling in the body, but suffering is more our reaction to that, which can result in all the anger and the frustration and all that. 


 So we have the power to control how we respond to the pain and that I think is kind of cool. Because there is something that we can do to combat the severity of the pain and not necessarily result in suffering.

Kristi: Exactly. And at first that was hard for me to wrap my head around, but the more you kind of get into it, the more you just know that you have that power. In the beginning it's you just kind of getting used to it and getting used to getting back some of your power. One of the things I liked in your article as well where you talked about how the pain psychologist talked about how it makes sense that the pain might increase when you get tense, scared, angry, because as you tense up you get restricted blood flow. I thought that was interesting.

Emily: Yeah. So he talked with me a lot about that and what's going on physiologically in the body when we're feeling stressed or nervous or anxious and how our blood flow actually constricts and our breathing becomes more shallow, our blood pressure might go up -- all kinds of things are happening. So to kind of combat those things that are going on in the body he had me do some breathing exercises and that's a really good mindfulness tool. And mindfulness is all about staying in the present moment and there's nothing more present than just being and focusing on your breathing.

 So he had me do some in his office and then he kind of gave me homework assignment to do like 15 breaths five times throughout the day. And I actually set an alarm on my phone to do them at five points throughout the day.

Kristi: Which I think is brilliant.

Emily: Right, just to remind you to do it. Now it's just sort of second nature to me and I just kind of do it whenever I start to feel a little stressed. But when I was just starting out with the meditation, it was really helpful. So the breathing exercises, we can do on right now, just to kind of practice.

Kristi: Yeah, I'd love it. I love it, yeah.

Emily: So, what you do is you just breathe in through your nose. And you want to breathe in not only to your chest, but fill your belly. So you really want to expand your whole chest and your stomach.

 So you breathe in through our nose and then we exhale through our mouth. And ideally you want your exhale to be a little longer than your inhale. Then you'll repeat that 15 times. And you can even kind of count -- one, two as you're doing it. So you're just focusing on the inhale and then the exhale.
Kristi: I sometimes used my fingers to keep count. 

Emily: Yeah. Whatever helps you keep track of it is fine. And if you lose count, that's fine too. But just kind of do it until you feel a little bit more calm. You'll find that it really does help just kind of center you. Really just focusing on the breath makes you stay very, very present.

 So what happens physiologically in the body when we're doing these breaths is that our heart rate goes down, our blood pressure goes down, our circulation is less constricted. And actually when I was in his office, he hooked up my fingers and toes to temperature gauges and it was very interesting when I did these breathing exercises that the temperature of my hands and feet would increase as I was meditating, which actually showed that the circulation was increasing. And of course we know that increased circulation can help with pain with CRPS. So it was kind of cool to have an objective measure what the meditation was doing to my body. It's pretty neat.

Kristi: I had an experience like that too, because I had heard from somebody else in my journeys and it wasn't necessarily called mindful, it was called breathing, you know, to breathe. And I want to look this up with the science on this. But yes, I was told to do a longer out than in, and maybe try and do a four count in and a six count out, but it doesn't matter exactly. But longer out. And that it has something to do with -- we talked about the sympathetic nervous system -- it's like kind of calming things down and just chilling things out.

 For me, I was setting alarms and doing three times a day and I would do five of these deep breaths in and out. It's the same kind of idea, it actually sounds very similar. And for me, one of my validations was when I went to -- you go to the doctor, the first thing they want to do is a blood pressure cuff, which is just torture, it was torture for me with my CRPS and putting it on my arm. One of the things that I would do is I would close my eyes and I'd start to take a breath.

 She had the blood pressure thing on there and all of a sudden she said to me after it was done, she goes -- wow, that really worked. She could see, you know, my blood pressure, she was pretty surprised at just taking a few deep breaths, what it did to control it.

 And for me it was me controlling that pain. Because usually being touched was like a thousand needles and extensive pain so I would just try to skip the blood pressure thing and say, forget it, you're not putting that on me. When I was starting to take control, it's like, okay, I know that that is going to be on my arm, but I'm going to control it, I'm going to breathe through it and it's going to be okay, it's going to stop and be done.

 So it's kind of, yeah, taking that power back a little bit in what you're doing and how you do things.

Emily: Yeah, it can be very powerful, definitely. Sometimes people have trouble just doing the breaths on their own and if you're one of those people who has trouble just focusing and having the motivation to do it on your own, there are so many great meditation apps now that you can download that just do guided meditations too, or even if you just Google mindfulness meditation there'll be tons of YouTube videos that come up. So there's so many other tools that you can use to to kind of like get you into that meditation.

Kristi: That's funny. I have a couple breathing meditations. I also have other meditations, but I'll link some up below. I've little short just breathing ones that kind of are similar to what we just did. So I'll link that up below too, thanks for reminding me. But you sent me a great video yesterday that we're going to put a link down to below as well, which is a great thing.

 Do you want to talk a little bit about the TEDx that you sent me?

Emily: Yeah, I mean basically in the video there's a person who noticed that... 


 He worked with somebody who had CRPS actually and had him do some of this mindfulness meditation that we've been talking about. And well, the person's pain didn't actually completely go away. What he reported was that it didn't really bother him as much, he could kind of deal with it better. 


So he ended up going on -- and you can watch the video to get more information to really study this in his whole career -- and he did find that practicing mindfulness meditation frequently can really reduce the severity of pain.

 So for me too, it didn't make my CRPS completely go away, but I was able to just deal with it a lot better. It was really a good coping tool for me.

Kristi: And I think that's a great word, coping tool. And I loved in the video, which people can watch from him doing it talking about how...


 one dose of morphine can reduce the pain by about 20%, and they found mindful meditation reduced the pain by 44%... 

Emily: Unbelievable.

Kristi: -- even more than the morphine. I love to hear statistics like that because I know that it does work for me.

Emily: Pretty mind blowing, yeah.

Kristi: Yeah, exactly. It's really mind blowing how we can kind of take that power back and do more with it. And I agree it's taking the edge off and letting you be in control, not necessarily taking the pain away. There's other things that we can do to where we got into remission and did things, that's a little bit of a different story. But, it's just wonderful.

 I know you've done a lot of mindfulness training, is there anything else in mindfulness that you want to share before we kind of say goodbye for today?

Emily: Just to really try to give this a shot. You know, at first I thought that what possibly can 15 breaths at five points throughout the day really do for me? And I was really shocked at how much it really changed things for me. I felt calmer, I just felt a little more grounded, the edge was taken off my pain and things just felt a little bit lighter.

 So even if you're a little skeptical, I would say just give it a shot. It was one of those things that can't hurt, so why not give it a try?

Kristi: Exactly. And it's not a money commitment. It's not really a huge time commitment and it's something that you can do. I'm glad you brought up that you have to make it a habit. So he talks about at least doing four days in a row for the first thing to get you started. And I talk to my clients all the time and the people that I work with that, yeah, you got to set up that habit. Once you do it for the month, it just becomes habit and you just keep going. So just during that first couple of weeks you have to kind of push yourself a little bit to make it happen, but definitely worth it.

Emily: For sure.

Kristi: Thank you Emily so much for joining us. And there was lots of great information and I can't wait to hear once people are trying I want people to respond. You guys have to let us know how you're doing and using those tools, because we both know that they're great tools and some of the things that helped us get into our remission for sure.

 Thank you so much Emily, and I know I'm going to talk to you again soon.

Emily: No problem, it was great to talk with you. Sounds good.

KristiThanks. 
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You are never alone! There is always HOPE! Feel free to contact me!

Kristi Oen
630 740 0312
kristioen123@gmail.com
painhelp.kristioen.com

Facebook CRPS Support group: https://www.facebook.com/groups/painhelp/

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Resources:

TEDx Talk - CRPS and Mindfulness


The Impact of Mindfulness by Emily (blog for RSDSA)

Breathing Meditations with Kristi Oen

Advanced Breathing Meditation with Kristi Oen

Heal the Past Meditation with Kristi Oen

Light Activation Meditation with Kristi Oen
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