Invisible Agony: Navigating Complex Regional Pain Syndrome - Episode 2: A Pediatric Patient's View

This is episode 2 of the series: Invisible Agony: Navigating Complex Regional Pain Syndrome. In Episode 2, we look at complex regional pain syndrome through the eyes of a pediatric patients. 

This course delves into the complexities of Chronic Regional Pain Syndrome (CRPS), equipping healthcare professionals with the knowledge needed to better support patients grappling with this condition. It offers a profound understanding of CRPS, its impact on patients and families, and explores evidence-based assessment and treatment strategies. Participants embark on an exploration with the goal of creating a meaningful impact in the lives of individuals and families suffering from CRPS and other rare disorders.

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Series: Invisible Agony: Navigating Complex Regional Pain Syndrome

Transcript

Episode 2: A Pediatric Patient's View 

MACLEAN: Well, welcome back to our series on complex regional pain syndrome. Joining me to continue our discussion is Dr. Candace Pierce. In episode one, Candace, we talked a lot about the condition itself and its symptoms, some statistics I'd like to delve into, some talk about treatment and also really get into the more personal aspects that are so familiar with you and talk with your daughter, Judah, about her experiences with it. But I'd also like to get to talking about navigating the medical system when you have a rare condition like this, because I'm sure that there are quite a few people with, not just CPRS but navigating any rare condition that is not well known. So why don't we talk a little bit about treatment and what's available and how that goes.  

 

PIERCE: I know we mentioned it in episode one that she has no known cure, and treatment is very limited, and research is very limited. There are a lot of research studies that I found that are going on all through the world, a lot of interesting ones. But treatment itself is usually multiple modalities, and they're going to be physical therapy, occupational therapy. A big one that they push for is cognitive behavioral therapy. And when we spent that month in Philadelphia, where Judah had to work on regaining so much of her function, learning how to walk barefoot again, how to run, how to go up and down stairs correctly, it was days of long sessions of physical therapy, occupational therapy, and then times with a therapist. So, when we came home, we only came back with cognitive behavioral therapy. But there's medications that they've tried. Gabapentin is a big one that they push for, but it didn't help Judah at all. So, after a round of Gabapentin, we pulled her off of that. We've tried holistic things. We have tried CBD oil, you know, she currently takes magnesium at night to go to bed. When our pain is really bad, we do a melatonin because pain medicine doesn't help. Opioids don't help. It's nerve pain. You know, sometimes you might see them use glucocorticoid steroids, but I really think that's only beneficial if you get an early, early diagnosis. In the beginning, had we known if we had tried that, would it have helped? I don't know. And really the research is very limited to say whether or not that's going to help. But usually what ends up happening is they have to learn how to regain functioning. So, you're getting that gait, strength, gait and strengthening and rebuilding the muscles. Let's see what else is there: coping skills and relaxation techniques. We've tried brain spotting and she did have a moment where her pain was gone for a brief second. But brain spotting and some psychotherapies that have to do with pain are new. So, there's again, limited research on whether or not those work. So, tens unit, she has a tens unit we use. But sometimes the tens unit hurts. Her biggest thing that she uses are heat, heating pad, pressure, and a compression sock. So honestly, treatment is whatever works for you. She's one of those rare people who her compression sock helps. But when we went to Philadelphia, they were very surprised that she was even wearing a compression sock because she still has severe allodynia.  

 

MACLEAN: So, on hearing your story earlier in episode one about splint causing so much excruciating pain, that's that is really interesting.  

 

PIERCE: So, where we're going? 

 

MACLEAN: It makes getting treatment very complicated because, whatever works for you. 

 

PIERCE: It does. And where we're going to be going for treatment soon. They have a whole list of things that they do that I find really interesting. So, we haven't done them yet, like oxygen therapy. I had to write some of them down, can't remember them all, but they're going to do vagus nerve stimulation, brain balancing, ionic therapy, lymphatic therapy, neuromuscular reeducation, neuromodulation, magnetic resonance therapy. So really, it's going to be a very interesting. It’s completely different than the treatments we've had before. And there's just not a lot of guidance and evidence-based practice, which also comes into play with insurance, because insurance will pay for the Band-Aids. Insurance will pay for the spinal cord stimulator, they'll pay for the ganglion blocks, they'll pay for opioids and pain drips, pain medication drips. But they will not pay for it, they'll pay for physical therapy, occupational therapy, and they'll pay for cognitive behavioral therapy. But for actual neurological treatments like what I was kind of talking about, insurance won't touch it, which again, is why a lot of people don't get the treatment that they need with this disease.  

 

MACLEAN: Right. So as somebody who has had to navigate this, what's your biggest takeaway? 

 

PIERCE: My biggest takeaway is if you have insurance or if you're a health care provider and that patient has insurance, the biggest champion that we have had has been a case manager through our insurance company. 

 

MACLEAN: Interesting.  

 

PIERCE: I didn't even know that those existed within insurance until we started this journey. But we were given a really good case manager through our insurance. And she has championed, she has helped our physicians rewrite referrals. She has really worked with us to help try to get Judah the treatment that she needs. She is the one person that feels like she's on our side.  

 

MACLEAN: That’s amazing. 

 

PIERCE: And all that insurance. Also, your physician's communication. We've emailed, they've given me everything that I've needed. They they've been there for me, but they've also admitted when they didn't know. And as a healthcare provider that's huge. Just, I don't know, and just be there for them. And I think the other thing that's important to realize is that when someone who's going through something like this comes in and they're yelling at you, which I try really hard not to get upset or to yell at anybody, but it's not you as a healthcare provider. It's the system. It's the system. It's the fear of the unknown. It's the frustration. And I think that when you're dealing with someone who's going through something like this, just remember that.  

 

MACLEAN: Yes, that's really good insight because especially something like this that's so complex and so poorly understood and causes so much pain and trauma, honestly, remembering that this is the situation that Judah is in, and that you and your family are in is extreme. It's extreme. 

 

PIERCE: And nobody tells you what to do next. We were given this diagnosis and then it was like, alright, appointments over, see you later. It's like you have this huge shock and now you have to figure out what to do next because you have no idea.  

 

MACLEAN: No idea. And that's very different from other diagnoses, like when you get a cancer diagnosis, they're like, we're going to have this, this person's going to call you and this person call you. When my daughter was diagnosed with autism, here are some resources. Call these people. This is what you want to try next. I mean, there's always, so often there is path and you're getting nothing. So that's incredibly frustrating. Well, I would love to hear from Judah and get some of your thoughts if you're cool with that. 

 

JUDAH: Yes, ma'am.  

 

MACLEAN: It's really nice to meet you. I've heard so much about you, and I've heard a lot about your story, and I just think you're an incredible kid. So, I just have a couple questions for you. I would love to know, what did you think when you first got your CPRS diagnosis at that moment? What were your thoughts? 

 

JUDAH: When I first got the CPRS diagnosis, I was kind of explained. They explained it to me in a way that just made me think they had no idea what was wrong with me. And so, that first time I was just like, they have no idea. We don't know what else to do. And then when I finally learned what it really was, and that it was something that for me was chronic and was continuing to stay and that it might stay forever. It was just this feeling of complete disbelief that there was something like this that I had gotten from merely tripping on a tree root. And it was just this feeling of disbelief. I wanted to laugh because I couldn't see how this was possible.  

 

MACLEAN: That seems fair and completely legitimate. Tell me, how would you describe the pain that you feel? 

 

JUDAH: It varies from day to day and, depending on what decides to make it angry that day, there are days where it feels like my foot's melting from the inside out. There're days when it feels like it's completely on fire or it's been stabbed in different areas of the leg. There are days where it’s just there, kind of constant and dull, and there's others where it's just throbbing like I can feel a heartbeat. 

 

MACLEAN: And how does that affect the rest of your day? Like on a day when it's just kind of a dull, constant pain versus a day when it feels like your foot is melting from the inside? How does that impact your life on those different kind of pain days?  

 

JUDAH: On days where it's just the dull constant, it's easier to kind of deal with because it feels more muted and it's not nearly as loud and angry as usual. And it's easier to continue throughout the day and just keep going with one foot in front of the other. Whereas when it's mad or when it feels like it's melting, it can cause me to have a really hard time focusing on everything that I'm trying to do. I get stressed about the littlest things that I probably shouldn't even be stressed about. I can get really a lot more emotional, a lot more irritated with everybody. And even though I know they're not doing anything wrong, it's just that snap of an instinct to get on to them because it hurts so much, and you don't know what else to do. And it really just kind of makes everything a lot more stressful, a lot more scary. It's a lot harder to get out of the bed those kind of days.  

 

MACLEAN: I can imagine. Actually, I can't. And nobody should have to and least of all you. What do you find makes it worse and what do you find helps?  

 

JUDAH: So, there's a lot of things that make it worse. Like literally almost doing anything makes it worse. Stepping out of bed in the morning hurts it, putting my sock on hurts it, going outside and just walking around hurts. The biggest main factor that has the most tremendous effect on it is cold. The temperature, if it's freezing, I can barely go outside because it hurts so much. It feels like I'm being stabbed in multiple places everywhere all at once, and it's not fun. I think the other one is there's been a kind of correlation between the weather and the air pressure of those days, days when it's more like rainy, thunderstorm, darker, it definitely hurts a lot worse than normal sunny days.  

 

MACLEAN: Interesting. So, it sounds like you've kind of done some of your own research, that you've actually gotten to the point where you think the air pressure has an impact. And that tells me that you're paying really close attention to how external stimuli are impacting you. So, how much research have you actually done on your own?  

 

JUDAH: When I first got diagnosed with CRPS, I looked it up, and I immediately went to my computer when I got home, and I'm like, what exactly is this? And I think the biggest thing that the first time I ever looked it up that got to me was the amount of people who had this. And it of kind of scared me to see the fact that I, of so many people, I had to be one of the few who had to get this condition just from literally tripping on a tree root and it was it was really kind of scary to see all this stuff and see all these people’s accounts. I will say when I first read research, there was a bit of hope. A lot of people said that after two years, their pain started to diminish. So, there was kind of a mindset of, if we don't know what else to do, maybe if I wait these two years, my pain might go down. Like some of these people’s did. And so there was a bit of that. I really do think a lot of other research came from when we we're looking for ways to put the pain in remission. And I think one of the biggest things is we found a book written by somebody, and there were a lot of different symptoms and things caused by it that I'd also been experiencing. It made me feel a bit less alone. And it also made me kind of wonder what other things were affecting it. And it's really helpful where you already kind of have an interest in how things work and the science of it. And so being able to look up the different factors that might affect it and being able to observe how the different changes with it is interesting, even though I would rather not have to do it in the first place. 

 

MACLEAN: Right? You're put in a very difficult position. So, how do you find the strength to keep going every day when it hurts just to get out of bed?  

 

JUDAH: I will admit that there have been times where it's got to the point where I just I want to get in bed, and I don't want to wake up the next day. I'm ready to completely give up. And I really think the biggest thing that has kept me from going down really down that road is the fact that if I gave up, I would have done all this for nothing. My mom and dad would be sad, my family would be sad, they'd be heartbroken. And what if the pain really did go away years later and I ended my life for nothing and I just gave up for nothing. And I wasn't really into risk that. And it's like, if I got given this, maybe there's a reason for it and maybe there's something I can do with it to help other people who might have the same problem. That's amazing.  

 

MACLEAN: That's amazing. So, can we talk a little bit about some of the treatments that you've gone through so far? 

 

JUDAH: Well, it was originally just treated as a sprain. It got wrapped. It was like treated with ice. And I would walk around on crutches for a while, but it kind of went down a downhill slope from there, actually getting worse. And so, before we ever really started any other treatments, there's a lot of discussion on the different conditions and the treatments are what happened. And I got scared because we had no idea what was wrong with me and hearing all these treatments that you would do for all these different conditions, I could possibly have is terrifying because I've never been good with doctors in the first place. When we finally kind of got the diagnosis, we started physical therapy a little bit. We would do it twice a week for an hour to help get the function back and to work on it. And it was extremely, extremely painful. I spent a lot of therapy crying half the time. And I will say one of the things that kept me going through therapy was the fact that they had a bowl of lifesavers on the counter. And every time before I started an activity, I would go over there, and I'd grab a lifesaver.  

MACLEAN: Wait, the minty kind or the fruity kind? Because that's important.  

 

JUDAH: Both, both, they had both. And I would get some of both. It was delicious. The next treatment we ended up going to was this program in Philadelphia and it was completely 3 hours of occupational therapy, 2 hours of physical therapy, and they didn't have lifesavers. So, it was a big jump. And it was really, really, really hard. I almost got kicked out for the fact that I had one treatment there that I hated with my entire heart that I was physically terrified of, and I almost got kicked out for it. It was a machine they called the shaker. And basically, there are two platforms. You would put one foot on each of the platforms and it would move those platforms up and down, up and down, up and down in an opposite rhythm to shake it really, really, really fast. And it hurt like heck. It was the worst experience I had the entire time, and they threatened to kick me out for it and that scared me so bad. Because I did not want to see my mom's face if I ended up getting kicked out of the program because I was terrified of this thing. So, I did end up doing it anyway. And we made it through three weeks of the program before they told me that I was ready to leave, and I was still in so much pain. I didn't feel ready to leave at all. Even though they got me back to the running, I still felt there were such ways that I still had to go, and the pain hadn't even gone down. And I'd been really hoping that this would have been the way that I could have gotten rid of it. And they sent me home and the pain started out kind of level. It was lesser than before, and then it went back on a downhill slope, and now we've gone back to doing 2 hours of physical therapy each week, Monday and Thursday.  

 

PIERCE: But I just want to interject here because this particular program was really focused on her gaining her function back. And so, they told us that the pain should start to go down over months. So, we went back six weeks later for a checkup, and they were like, nope, you're good. You've maintained your function. And so, they released her and said she was a success.  

 

MACLEAN: I remember this, and I remember how scared she was to leave because she didn't feel like she was ready.  

 

PIERCE: Yes. So, they released us from the program. And again, it goes back to what do I do now? Her pain is still there. Her pain has continued to increase, so we have restarted physical therapy here while we were figuring out our next steps for treatment. And on Monday, they do a bilateral function and strengthening. And then on Thursday, it's just her left leg, and they only focus on that. And so, on her Thursdays, I think those are her worst days.  

 

MACLEAN: Yes, it's really interesting how treatment is. You mentioned PT and OT are your two of the biggest treatment paths and those have pretty much nothing to do with pain. They're just about getting function. So basically, it's learning to function through the pain, not even learning to function through the pain, just having the physical capability to function, but still being. 

 

PIERCE: But that's, that's the other thing that they focus on, cognitive behavioral therapy that is specifically about teaching your coping skills to cope with the pain, not getting rid of the pain, coping with the pain.  

 

MACLEAN: Which seems wildly unfair because why, why, should you have to have that much pain? Judah, I would love to know from your perspective, what would you like healthcare providers to know? 

 

JUDAH: I feel like the biggest thing healthcare providers kind of need to understand and the something you already kind of talked about, it's not made up. It's a real condition. The pain is completely real and there's something going on. It's not us wanting attention. I wouldn't be doing this for attention, because I'd rather keep the attention off myself. But just it's real. And sometimes you kind of need to understand that. And it's also something they need to understand is that it's scary. It's terrifying to be hearing all this stuff that they don't quite understand what's going on with you. And if the doctors don't know what's going on with you, what are you supposed do then? 

 

MACLEAN: What's your best experience? What the healthcare provider knows? Your mom mentioned Dr. Wilson, but have there been any other moments that have stood out to you as being really positive and helpful? 

 

JUDAH: I think the biggest ones were our doctor we have now, who has always kind of whenever we go for a checkup or something, he's always just kind of like, asked how I'm doing. He's made it really light and fun, a lot less stressful. Even though we were in the middle of the doctor's office. And so, it's definitely a lot more lighthearted than some of the other kinds of doctors we've experienced and been around with. And I'm just grateful that we have him now and that he's been such a great help getting us back in physical therapy. And this pharaoh  

 

MACLEAN: That's great. And what are three things that you would like just anybody to know about CRPS?  

 

JUDAH: I think the first thing is really, really, really big thing. It's not made up and it's not for attention because I have been told before, it's not real. Just pretend it's not real and you'll be fine. I've been told that those kind of things, and that it doesn't exist and that I'm fine. It really does hurt. And one of the biggest things is that, like in Philadelphia, one of the things the program was they told the adults to basically ignore your child's pain, completely flat out ignore it. And that terrified me because I thought if she's ignoring my pain, does that mean it's not it's not real anymore? And so those kind of things, if you can't just listen to something and you can't just flat out ignore the pain, it's there and it's going to be there for a while if you don't do something about it. And it really makes it worse to flat out ignore it, because then like, including me, you get the mindset. Maybe it really isn't real and maybe I'm doing something wrong and maybe it's all my fault. 

 

And I think that leads into the third thing is when you are kind of suffering with something like this, you kind of get this mindset that it's your fault, that you did this to yourself that, like I struggle with. I'll apologize continuously to my mom for complaining, for continuously doing it even when it hurts because I feel guilty for feeling this pain, for complaining about it to her, that there's people who have it worse off than me and I shouldn't even be complaining or doing all this stuff. 

 

MACLEAN: That's really, really hard. And I really appreciate you sharing this because this is incredible it's, it's actually hard to hear and you're so poised. And I've read some of the things you've written about your condition and you've go on my mind. And I really appreciate you taking the time to share your experience with us. 

 

JUDAH: Thank you. 

 

MACLEAN: Candace, before we close up shop, I think we don't have too much longer now on this episode, but can we talk a little bit quickly about navigating the system and what you've learned about navigating with the rare condition, a rare syndrome like this?  

 

PIERCE: I have learned that you have to advocate for yourself, as you know, as a parent, as the parent of a patient with this rare disorder. When we got the diagnosis, nobody knew what to say. Nobody knew what to do. And we walked out of there with nothing. And so, you had to do a lot of your own research, and you had to bulldog a lot of things through. You had to figure out where your champions were going to be. And that's what I mentioned earlier. 

 

We found our champion through a case manager, through our insurance, and she actually helped us get the entire program covered by our insurance, including airplane tickets. You know, I mean, everybody's insurance is going to be different. But had we not figured out where our champions were, we would not have known that. So really championing case managers and social workers who can help you with figuring out the next steps, because it's hard today to navigate insurance and to navigate the health care system as a whole. As health care providers being prepared for an unknown. You can't be prepared to know everything about every single rare diagnosis. But there are some generic steps that you can do to support and to help those who receive it so that when they walk out of there, they're not walking out of their shell shocked, wondering, what do I do now?  

 

 

MACLEAN: And then finding the one website that says that this is also known as the suicide disease. How terrifying must that have been?  

 

PIERCE: Yes. We actually told you not to research this when she came home, just to just turn it off her experience, we were like, please don't research it. Let us sit down and talk to you about this. But I can't control what she does at school. But yes, that's really the biggest thing is navigating the system. 

 

There are no easy steps to doing it. It is not. There is no evidence based guidelines that break it down for you and break down what treatment is. Because like I said, when I found that the website for CPRS, the only treatment options they gave you were spinal cord stimulators, pain medication, drips and blocks. So, and that's really not all that there is that's out there. 

 

You just got to figure out where to find it. So, there's not an easy way to navigate the health care system, to be honest, with a rare disorder. So, find your champion. That's my biggest advice that I have learned through this.  

 

MACLEAN: Well, I wish that we could provide a lot more. She could provide all the information and resources and support. But we've really reached the end of this particular series on complex regional pain syndrome. I really appreciate you Candace and Judah, for sharing your personal experience and your insights. I have way more understanding of this, and I've been hearing about you, Judah. You know, for quite a while. I remember when you went to that program for three weeks because that was when your mom and I were really becoming friends.  But I've learned a ton here today, and it's really helpful to hear about how much it's a challenge, but to also hear how amazing you are in handling it. And I thank you again for taking the time to educate us all today.  

 

PIERCE: I do want to throw out some really quick support that you can look into for CRPS if you know of anybody battling it. There's the Reflex Sympathetic Dystrophy Syndrome Association, and they work to provide support and education and drive research to develop better treatments. And again, I'm sure there's the Burning Nights. It's a CRPS support group. I know they have virtual online and are the RSCSA also has in person around the country support groups listed as well. We have not found any government-funded help with treatment, but I do know CRPS is known worldwide and there are research studies that are ongoing right now from infrared imaging, prognostic factors, augmented reality mirror therapy, ketamine and midazolam infusion. 

 

So, there's a lot of research that's going on worldwide. Even though it's rare, it is known and felt around the world. And then there are also some 501c3s that can help if you know somebody who is going through treatment that needs help with fundraising. And you can see those, some of them are the Burning Limb Foundation. 

 

And I know for us being a military family, we're also using the Chek six Foundation. So, there is support to help out there. But as someone with a rare disorder, you have to do the research to find it.  

 

MACLEAN: Well, thank you.  This has been incredible. And to our listeners, I hope you've gotten a lot of insight into this topic, as much as I feel I have. We encourage you to learn more and also to explore many of the courses that we offer at EliteLearning.com to help you grow in your careers and earn CEs. But thank you again for joining us for this and thank you, Judah and Candice.  

 

PIERCE: Thanks for having us.  

 

JUDAH: Thanks for having us.