Healthy Wealthy & Smart 446: Dr. Leda McDaniel: Holistic Approach to CRPS
On this week’s episode of the Healthy, Wealthy and Smart Podcast, I welcome Leda McDaniel on the show to share her experience with persistent pain. Leda McDaniel is a Physical Therapist in Atlanta, GA. As a physical therapy student, Leda published a book that chronicled aspects of her three-year battle with chronic knee pain and ultimately led her down a path of discovery on her way to healing with a holistic approach.
In this episode, we discuss:
-Leda’s experiences with Complex Regional Pain Syndrome (CRPS) and how it impacted her life
-Pain neuroscience education and a holistic approach to treatment for CRPS
-How Leda’s approach to patient care has shifted to a biopsychosocial framework
-The importance of listening to the patient’s story and being a voice of hope
-And so much more!
Resources:
Email: LedaMcDaniel1@gmail.com
Moments from a Year of Healing: A Book of Memories and Essays
The Outcomes Summit: use code LITZY
For more information on Leda:
Leda McDaniel is a Physical Therapist in Atlanta, GA. She earned her Doctorate of Physical Therapy from Ohio University and holds a B.A. in psychology from Trinity University, in San Antonio, Texas where she also played Basketball and ran Track and Cross Country for the NCAA Division III School. As a physical therapy student, Leda published a book that chronicled aspects of her three-year battle with chronic knee pain and ultimately led her down a path of discovery on her way to healing with a holistic approach. It was this experience that motivated her to become a physical therapist in order to help others recover from chronic pain.
Her book is entitled: “Moments From a Year of Healing: A Book of Memories and Essays” and can be found on Amazon:
Leda’s Professional Blog:
https://sapiensmoves.wordpress.com/
Read the full transcript below:
Karen Litzy: 00:01 Hi Leda welcome to the podcast. I'm happy to have you on and a big congratulations to you for being a new physical therapy graduate. So welcome to the field. And you know, longtime listeners of this podcast will know that I often have people on the podcast who have struggled through persistent pain, who maybe are still having persistent pain issues and you are one of those people. So what I would love for you to do is just let the audience know who you are and tell your story and then we'll take it from there. So I will throw it over to you.
Leda McDaniel: Thank you. Yeah, so I just recently graduated from physical therapy school and I’m entering my clinical practice as a physical therapist. So I'm in Atlanta, Georgia and I'll be starting residency at Emory university for Orthopedic Physical Therapy in August.
Leda McDaniel: 01:03 So I'm really excited about that. A little bit about what got me into this field and interested in being a physical therapist. I had an ACL injury that I suffered in my mid twenties, tore my ACL playing soccer and then I had surgery, reconstructive surgery, to repair that ACL. And the recovery from the surgery didn't quite go as planned, so I had had a prior ACL surgery, so it kind of knew what to expect. What's this time it was not quite so good and it was a little bit different and challenging in that the physical therapist I was working with kept pushing me to strengthen my muscles and try to get my range of motion back and all those things that I was familiar with, but I knew it wasn't really responding as you might expect it would after surgery. So I had this chronic pain and inflammation that developed over the next six months to a year.
Leda McDaniel: 02:04 And both my physical therapist that I was working with at the time, and then, a handful of orthopedic doctors, including the surgeon who did the surgery, they were a little bit puzzled as to what was going on because I had a repeat MRI. They couldn't find any structural issues. At the time I was really focused on that idea of well I still have pain, what is wrong structurally? And I just had this feeling that something is wrong. It didn’t feel right. It was always painful and it was always swollen and I really couldn't it over the hump to the extent that I was even limping when I was walking about a year after surgery. So I continued to try to rehab and over the next additional year and two years out of ACL surgery I had a second surgery.
Leda McDaniel: 03:00 The idea that they clean out some of the scar tissue in there. It's the joint capsule is scarred up a little bit and try to get things work in a little bit better or feeling a little better after that surgery. Again, that kind of made my situation worse and I developed this mirror pain cause I knew I was hypersensitive at that point and had after that diagnosis of complex regional pain syndrome and just really severe nerve pain to the extent that not only was it painful to walk, but I really couldn't walk and I couldn't put pressure on that knee. I couldn't touch the knee without it being painful. And kind of just spiraled into it's really bad situation where I was pretty disabled. I wasn't able to work at the time. And in that time period had gone back to school for physical therapy because I'm flattered by this injury and wanting to help other people regain their health.
Leda McDaniel: 03:59 I had some really excellent physical therapists along the way who really try their best to work with me even though things weren't going in an ideal direction. So, anyway, so I had to take time off school. I couldn't work. All of this really pursuing or being fixated on this idea of what structure is injured. And it really, the course of my injury and health didn't really change until my perspective or kind of switched my focus to more of a treating pain based on what were currently understanding is more of a progressive approach to chronic pain, which is pain neuroscience education where we're understanding that there are many components to pain not just structural ones and a lot of these inputs can contribute to these situations where you have this over sensitivity or hypersensitivity.
Leda McDaniel: 05:05 And that's kind of the place I found myself in. So I really started to self treat based on some of those principles and try to reduce the sensitivity that built up within my nervous system. And over the course of about a year, I was able to turn things around and get back to the point where I was walking. I was back to school, working, functioning in society like I wanted to and my pain levels were significantly decreased. And gradually, gradually got to the point where I was pain free.
Karen Litzy: And can you talk about what specifically you did during this time in order to treat the pain? Obviously not treat the structural issues, but to treat the pain just so the listeners have an idea of what you did.
Leda McDaniel: Sure, absolutely. So it's not a quick fix approach by any means, and it's not a singular approach by any means.
Leda McDaniel: 06:08 So I really had the perspective of creating as many positive inputs to my life as possible. And I was really diligent about addressing all the different components as we know, pain really has this bio, psycho social, construct. And so I really wanted to have positive inputs physically, mentally, and emotionally and socially. So physically, I was eating a really nutrient dense diet, so lots of full foods, real foods, fruits, vegetables, bone broths, collagen stocks, things like that. So really preparing foods from scratch and eating a lot of nutrient dense foods. I was meditating to decrease my sympathetic activation or over sensitivity work on the mental component. I was doing a psychological therapy at the time. So cognitive behavioral therapy to try to just that psychological component. I was using visualization to try to incorporate the lowest level input that I could to that system and really start preparing for movement in a joint that couldn't really take movement in the beginning, but trying to retrain my brain to prime it for the movements I want it to be able to do.
Leda McDaniel: 07:42 So I did a lot of visualization on walking, moving my knee. When I got a little bit better, I would visualize myself doing higher level athletic activities such as running or jumping or those sorts of things.
Karen Litzy: 09:44 So over the year plus time that you started incorporating all of these different kinds of inputs into your system, did you start doing everything all at once or did you sort of slowly pepper things in?
Leda McDaniel: Yeah, so there was definitely kind of a gradual addition of different components. As I learned more, I was trying to incorporate different types of movement to try to make a difference. So, for example, I'd started a mindfulness based stress reduction meditation course online. That was free. Because I had found out about that and that helped quite a bit. But I gradually added other things in. And one of the things I wanted to mention as well is I was doing, it's hard to mention every single treatment I was doing cause I was really trying to address all these little pieces and I think addressing all those little things really made the difference to turn the tide.
Leda McDaniel: 11:07 So one of the other important things that I was doing not overly relying on but definitely helped me get out of the most acute and serious pain so that my nervous system could reorganize was pharmacological treatment. So I was taking so medications to get me out of pain. And I think that as an adjunct treatment to the other things I was doing, it was actually really important. So you have these periods of not being in such severe pain that I had the ability to you some of these other treatments.
Karen Litzy: Yeah, and I mean I don't think that there's anything wrong with pharmacological interventions, especially for people with CRPS. I mean this is really painful and I think that you're right, you kind of need the medications as a bit of a reprieve for your systems so that you can get to all this other stuff.
Karen Litzy: 12:08 Now the question is, is are you now on the same medications that you were on in the sort of height of this pain process?
Leda McDaniel: I am not. So I was pretty resistant to taking medication in the beginning. And I really used it for the smallest duration that I could to get me out of that really severe pain. Once I was on my way with this combination of lifestyle factors and I'd really seen the pain decrease to the extent that I could walk without being in pain, or I could touch my knee without having a severe pain reaction, I really started to taper off these medications with the guidance of the prescribing physician.
Karen Litzy: Right. So I think for listeners is just important to remember that if you have pain, we're not saying do all of this other stuff and don't go a pharmacological route because sometimes that's necessary, but you have to make sure that you go that pharmacological route with your physician and that when you're ready to kind of taper down that you do that also under the guidance of your physician.
Leda McDaniel: 13:31 Absolutely. That's a great point. I think also it's important to mention that, and this has been mentioned by others in the field that are doing this work, really trying to get patients to take an active role in their treatment. So just taking medication but not doing these other active components such as meditation, the prescribed loading if that's appropriate. And really addressing lifestyle factors and taking ownership of those in addition to these more passive treatments I think is really important.
Karen Litzy: Yeah, and I think when you're talking about people with persistent pain issues like CRPS, you kind of, I think it's okay to have that combination of active and passive treatments. But yes, the patient has to know that they're not coming to the healthcare practitioner to be fixed, but instead they're coming to be guided and that they need to, like you said, take an active role because all of this, you know, nutrient dense diet, meditation, psychological therapy, visualization, progressive loading, exposure training.
Karen Litzy: 14:49 So exposure to movement, exposure to activities that maybe you have fear avoidance behaviors around. All of this requires active work from the patient, active work from you. Right? And if you're not doing that as the patient, I think that you’re not giving yourself an advantage. Would you agree?
Leda McDaniel: Yeah, absolutely. Well said, Karen.
Karen Litzy: Yeah. And so let's talk about timeframe here. So obviously changing your diet. We know that diet does have a huge ramifications to overall health, the psychological training, the meditation, the gradual loading, exercise, movement, visualization. This all takes time. So people will probably be thinking how many hours a day were you working on this stuff?
Leda McDaniel: Well, for better or worse, I wasn't able to work or go to school at the time. And so really regaining my health over this year period, I actually deferred a year from physical therapy school.
Leda McDaniel: 16:00 I had started and completed my first semester, but then wasn't able to continue sequentially, but my program allowed me to defer a year. So for that year my fulltime job was getting back to health and I really took that seriously as a full time job. So, a majority of my time was spent trying to create these positive inputs. I was doing a lot of reading and trying to learn as much as I could about pain and physical therapy related things, because that's developed into one of my passions and I really felt like it was important to maintain this engagement in intellectual pursuits as well, so that I could have some connection and some purpose to my future, even though I wasn't actively in school at the time or actively working at the time. So really to answer your question I was working on this pretty diligently.
Karen Litzy: And what was, and maybe you didn't have one, I don't know, but did you have this sort of Aha moment at any point? So from the first surgery to where you are now, can you say there was one point where you reached this crescendo and then things started to fall in place?
Leda McDaniel: 17:24 Yeah. Thinking back, I think, I can't pinpoint a specific time point that I would say generally it was about the time when I was forced to take a break from school. So it was almost at the lowest point where I wasn't able to walk on my leg, wasn't able to touch my knee because a sensitivity pain had gotten so bad that it really taken me out of a normal functioning, productive life. And somewhere around that point I was researching and reading as much as I could on my own. And I really stumbled upon this pain neuroscience education approach and some of the work of Lorimer Moseley and Butler and Lowe. And this idea that the pain that I was experiencing didn't necessarily have a structural cause. And to me that was the time period when I really changed my approach from this fixation on trying to find a healthcare practitioner who would tell me what is structurally wrong and how can we fix it to an approach of my nervous system.
Leda McDaniel: 18:42 My brain is just creating this maladaptive signaling, maladaptive pain response and I really need to target my nervous system sensitivity versus trying to pinpoint what is wrong structurally for me, that seems like the turning point, where I was able to really start making gains and gradually progressed back to health.
Karen Litzy: Yeah. So it was kind of the light bulb went off and you said to yourself, I think there's another way. And was there any one piece of reading book article that you can say, you know something, this really helped me to understand what's going on?
Leda McDaniel: 19:30 Yeah. I think as somebody who's interested in health at the time, but you didn't have a great grasp on some of the biology and physiology surrounding pain systems and the nervous system one book that really helped me understand these things and I would recommend to clinicians and patients who are wanting kind of an easy buy in to these sorts of principles is Lorimer Mosley's book painful yarns. He tell stories to communicate these principles of how pain systems work in our bodies. And really does a lovely job making these principles accessible to people who might not have the scientific background to understand because pain is complex. These systems are complex. But listening to these stories, I think it makes it really understandable.
Karen Litzy: Yeah. A little bit more digestible for folks. I often tell my patients to get that book because it really is a patient forward book because of the stories and the metaphor that he uses throughout the book to make you say, Huh, okay.
Karen Litzy: 20:51 I think I'm starting to understand this a little bit. Because for the average person, maybe they don't need to get too into the weeds as to the chemical reactions happening in the brain and within the body in the spinal cord and why these persistent pain issues can arise and kind of take hold in the body. But we certainly can give patients stories and metaphors to help them have a better understanding of maybe what's happening and to decrease the fear around what's happening within their bodies. And I think painful yarns does a great job at that.
Karen Litzy: And all right, so you are diagnosed with CRPS you dive in, you start treating yourself. Were you still seeing a physical therapist over this year? Or were you really just at this point working on all of the components you mentioned above on your own?
Leda McDaniel: 21:51 I had actually stopped seeing a physical therapist because as I was learning more, I was seeking a clinician who had some of these approaches in their toolbox. For example, the graded motor imagery. And I really unfortunately couldn't find one in my geographic area. And so I was actually doing these treatments, kind of self treating at that time, hoping that eventually I could work with a PT for some of the loading components. But knowing that at that point I just couldn't tolerate the exercise based physical therapy.
Karen Litzy: Right. And now were you ambulatory at this time? Were you using an assistive device were you in a wheelchair. How were you getting around?
Leda McDaniel: So after that second surgery I was using crutches for about nine or 10 months. And really non weight bearing. I couldn't put weight on my leg so I didn't go to a wheelchair.
Leda McDaniel: 22:55 Partly probably out of stubbornness. But yeah, I was using an axillary crutches to get around everywhere.
Karen Litzy: Okay. Well that is not easy as we've all had patients who've been on crutches for like six to eight weeks and they seem to just be completely spent. I can't even imagine for 10 months. But I mean good on you for keeping up and I'm assuming you started seeing progress, which is why you kept with all of this stuff. Right? So how long into this year and a half or a year plus did you start to see changes within your pain?
Leda McDaniel: I would say probably within, it took probably three, four months of diligently committing to these practices before I really saw some noticeable change. Which was really hard. But at the same time I think is an important thing to communicate where these changes and the sensitivity that's been built up in your nervous system, it does take time.
Leda McDaniel: 24:10 It does take some patience and some persistence and I would really encourage patients and clinicians alike to have this longterm perspective of if we can introduce these positive things just to kind of have trust and just kind of have faith that they're going to make a difference, that they are making a difference on some level, but that noticeable changes might take awhile to manifest.
Karen Litzy: Yeah, I agree. I think it is very important when you have patients with persistent pain to be very honest with them and make sure that you're giving them some realistic timelines. Because let's face it, we're human beings and we get frustrated, right? We want things to happen sooner rather than later. Especially when you're in pain and especially if you're suffering. I mean you just can't imagine doing this for another month or week or even day for some people. But I think being honest and giving realistic feedback is very important because that also helps you to mitigate your expectations, which is important, especially when you have such a serious pain complications as CRPS. And now, how has this experience influenced the way you will now treat as a physical therapist?
Leda McDaniel: 25:48 I think ultimately while there are a lot of things that I think it adds to my ability to treat patients as a clinician, maybe the first thing is to have a little bit more empathy and compassion for what these patients are going through. Having had this experience, I think I understand what the chronic pain journey and struggle looks like, but also what it feels like to be in that. And I think it helps me relate with my patients a little bit better. So that I'm not just talking at them, but I'm really able to kind of imagine what impact it's having on their life and to try to communicate accordingly and really, really develop some good therapeutic alliance with these patients. I think the other thing that it allows me to do as a clinician is kind of as we were talking about, have a little bit more patience and approach these patients in a little him more of a calm manner.
Leda McDaniel: 27:01 I think in realizing that it's going to take time to see changes, but that doesn't mean that it's not worthwhile to work with these individuals on improving their function but also on improving their pain. And really promoting this expectation that recovery from pain is possible or could be possible, but that's more of a longterm goal for these individuals than some of the patients that we work with who are in an acute injury or an acute pain situation.
Karen Litzy: Yeah. So it's really providing hope to the patient, allowing them to even visualize themselves pain free. Cause oftentimes if you're years into a painful experience, sometimes you can't even picture your life without it. So I think it's really important to give that hope to patients. And another thing that you had mentioned in some of the pre-podcast writing is that allowing the patients to tell their stories.
Karen Litzy: 28:16 So just like today having you tell the story, it can be very powerful way for you to continue with your recovery and for others to learn from. So as clinicians, we have to allow these patients to tell their story and also noting that that story may not all come out at one visit.
Leda McDaniel: Yeah, good point. I think there's just like in any physical therapy session or clinician patient relationship, depending on the personality of the patient and the clinician, there's just a natural unfolding of developing trust and developing an ability to communicate between the two people where you really can't force that story out of the patient and you really can't force that trust or rapport but I think as you're intentional about listening to your patients and understanding where they're coming from and how their injury is affecting their life, personally I think over the course of a few treatments or however long it takes to naturally work itself out, you really can develop a close alliance and improve your ability to the effect that patients' health in a positive way and garner some positive outcomes from your treatments.
Karen Litzy: 29:48 Yeah. And I think the other thing that's important to mention is sometimes patients aren't ever pain free. And that's okay. Sometimes patients aren't pain free, but they're doing all the things in their life they want to do. You know, they're working towards the things they want to do. Or maybe they went from taking four pain pills a day to a half of one a day. So they may still have pain. And I think as physical therapists, it's sometimes a little difficult because we want to fix people, right? We want to make people 100% healthy, but it's okay if the patient continues to have some level of pain that they're coping and they're living the life that they want to live. So I think as new graduates, if I could give a little piece of advice to all of you guys, it's to not take on your patients outcomes as your own, but to really, like you said, have empathy, sympathy, step into their shoes and understand that hey, maybe they're not pain free, but they can do everything they want to do. And that's okay. They can live with that.
Leda McDaniel: 31:00 Yeah, that's a great point. There are different markers or ways that we can see positive change in physical therapy and decreasing pain is one, but improvements in function are another one and absolutely mentioning if we can reduce medication use that can have positive implications of a person's experience and their overall health as well. So I think all of those things are great. Great things to think about.
Karen Litzy: Yeah, absolutely. And now, you know, is there anything that we missed? Anything and we're going to, I'm going to get to your book in a second, but is there anything that we missed about your story? Any piece of advice that you know, maybe you would like to give to clinicians as someone who's gone through it?
Leda McDaniel: 31:52 I think the first thing that comes to mind is as clinicians, sometimes faced with individuals with longer lasting pain or sometimes pain that doesn't quite match a structural issue or a clear PT diagnosis or medical diagnosis. Sometimes the inclination is to get uncomfortable and maybe distrust the patient or the cognitive dissonance that you're feeling into more of a situation. What I would really ask you as clinicians to first off, no matter what, no matter how uncomfortable this makes you or how puzzled you might be as far as what's going on, I would just ask that you really trust what your patient's telling you. Trust their story, trust their experience. And if it takes a few visits to kind of reconcile what they're communicating with, maybe what is going on, whether it's a sensitization or a longer lasting pain that's manifesting in some other way, I would really ask that you treat them as if what they're telling you is the absolute truth.
Leda McDaniel: 33:19 And give that a chance to really play out before making assumptions about a malingering or a psychological primary component to what they're telling you. I think in a lot of cases that's too soon of an attribution from clinicians who are uncertain about what's going on.
Karen Litzy: Excellent advice. And you know, at the end of each podcast I usually ask someone, hey, what advice would you give to yourself as a new graduate right out of PT School? But since you literally are a new graduate right out of PT School, it doesn't seem like the right question to ask. But what I will ask is this, knowing where you are now in your recovery and in your life, what advice would you give to yourself during the height of your pain experience? So if you could go back in time knowing where you are now, what advice would you give to yourself then?
Leda McDaniel: Oh yeah, that is a great question. I think what I would tell myself is, and I did this a little bit, but I think I would try to encourage myself further, is to keep an open mind about what is possible for your improvements in health and for the body's ability to really heal and recover given the appropriate inputs.
Karen Litzy: 35:01 Excellent advice. Thank you so much. And now if people wanted to know more about your story and dig a little bit deeper into your year of healing, they could read your book Moments from a Year of Healing a book of memoirs and essays. And where can people find that?
Leda McDaniel: Yes, so my book is available online. It's available from Amazon, both in a print paperback version and also as an Ebook, supported by kindle. So they can search for the title of the book, Moments from a year of healing, a book of memories and essays or search for my name as the author. And I believe either way they should be able to access that.
Karen Litzy: Awesome. And what if people have questions for you? Are they want to talk to you a little bit more? Where can they find you?
Leda McDaniel: Sure. My email is LedaMcDaniel1@gmail.com and I'm happy to open conversations and really talk to patients or clinicians who are wanting additional resources or just wanting to hear more about my story. Yeah, I think that would be great.
Karen Litzy: Well, thank you so much for coming on and sharing your story. And again, congratulations on being a new physical therapist. Good luck in your orthopedic residency at Emery. And I am very certain that any patient that works with you will be very lucky to have you. So thank you so much for being on the program. Everyone listening. Thanks so much. Have a great couple of days and stay healthy, wealthy, and smart.
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