Welcome back to the Healing Pain Podcast with Deborah R. Brandt, PT, DPT
We’re discussing the intersection between PTSD, Post-Traumatic Stress Disorder and CRPS, which is Complex Regional Pain Syndrome. My guest is Dr. Deborah Brandt. She is a retired Doctor of Physical Therapy. She teaches about issues regarding chronic pain and the use of somatic therapy practices. Her personal experience with and the study of complex post-traumatic stress disorder as well as complex regional pain syndrome, which she identifies as being complex psychophysical phenomena, has enriched her comprehension of both issues and provided her with unique tools to communicate her insights and knowledge to others.
In this episode, we will discuss treatment options, but more importantly, this episode is an opportunity to hear one’s lived experience, which includes her knowledge of PTSD and CRPS gained through her direct firsthand experience rather than learning through textbook-like descriptions, which can be challenging to understand the full complexity of what people go through. Without further ado, let’s begin and meet Deborah Brandt and learn about the intersection between PTSD and CRPS.
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The Lived Experience Of Post Traumatic Stress Disorder And Complex Regional Pain Syndrome With Deborah R. Brandt, PT, DPT
Deborah, thanks for joining me on the show.
Joe, thank you so much for having me.
I’m excited to have a fellow New Yorker and a PT.
I’m excited to be here.
A good place for us to start is to tell our audience how you became interested in the link between chronic pain and post-traumatic stress disorder.
I became interested because I had to and it happened to me. I got injured in the park. I had been previously hit in the head with a ball. I was out with my dog and was already in PTSD. I got knocked over by a dog and got bad feet injuries. It became chronic regional pain syndrome. To deal with that, it was a very long journey. It started in 2012 and to some extent, it continues but it’s the injury that continues not the CRPS.
With chronic regional syndrome, there are lots of different variations of it. It sounds like you had it in 1 foot and 1 in extremity. What did that look like? Sometimes it’s pain for people. Other times it could be intense swelling and discoloration. What did you experience?
I experienced first a pain that I never had. I had foot fractures and sprained ankles before but it was a different pain. The best way that I can talk about it is that it affected my thinking, my state of mind, how I felt and responded to things more than the pain. The pain was immobilizing me for about three days. I barely got out of bed but I wasn’t gone. You have pain because you have a fracture. I said, “This is different.” She said, “You can come over but I can’t help you.”
I was with it by myself, as people are. It was very hard at that time. I can’t distinguish between the effect of the PTSD that I was living in and the effect of the pain. It was like living in a morass. I was supposed to wear a boot but I couldn’t because of the pain or do anything. To put anything on my foot, I had to wrap it in cotton batting. I knew somewhere inside of me that this was not a fracture that I was experiencing. I didn’t know what to do because I couldn’t think. The most debilitating part of it was getting myself to the point where I could say, “I need another plan. This plan isn’t working.”
How long into the process was it where you said to yourself, “This isn’t working. I need another plan?”
Not very far into it. I went to another orthopedist. He also ignored the pain and other indications on the MRI or the X-ray that there was another injury. To tell you the truth, I had another injury which is a broken toe. I had a cuboid fracture and a broken metatarsal. It’s phenomenal but he made me scream to show that I was a pain patient. He ignored that this was a fracture. He thought it was some swelling or something.
He sent me to PT. The PT ignored it, I’m sorry to say. She was trying to get me to go off on my toes and I couldn’t. She said, “If you don’t do that, you’re not going to get better.” I don’t think I’m unique that way. It is an evolutionary process where you try the next thing and either it works or it doesn’t work. You have to try the next thing that either works or doesn’t work. One of the things that I want to say is, “Don’t stop and give up because you might have to go through ten things that don’t work. You may be disappointed. You may be having continued suffering.” It’s easy to be angry, despairing and frightened. Those are perfectly normal and natural responses to an untenable situation.
It wasn’t an untenable situation but I’ve been in many untenable situations and so is everybody. A very important part of any untenable situation is to not give up. I have here a poster that I got from UNHCR, The UN Refugee Agency, of a bunch of people on a boat in the middle of the ocean. The refugees are escaping and it says, “The only thing stronger than fear is hope.” I live by that. I encourage people who are facing untenable situations physiologically and even emotionally, if they can dig up some hope, it makes a lot of difference.
In the story that you’re describing, it’s not uncommon for chronic regional pain syndrome. It’s very misunderstood by well-trained professionals on all levels of the healthcare spectrum. People go misdiagnosed quite frequently. When someone goes misdiagnosed then it becomes a search for, “If I can’t get an accurate diagnosis, who even cares what the diagnosis is? I want to start to find the solution, relief and ways to get my life back.” What did you try initially try to remedy your CRPS?
The answer to that is very complicated. I do want to put in here that I was very lucky that I got properly diagnosed after four months. People go for years and have surgeries that don’t work. Thankfully, I did not. I made a list. It’s not in any order. In brief, I went to my internist because the PT was going to want to treat something else. She wanted to treat my Achilles tendinitis and she couldn’t because of the pain. I ended up going to my internist and said, “This swelling here, I don’t know why it’s still swollen.” He squeezed my foot and I screamed. He said, “Go get 2 MRIs, 1 for each foot.”
I took those MRIs to my trustee podiatrist, who has been my standby, Dr. Novella. He’s a wonderful man. He said, “Have you thought about going to a pain doctor?” I said, “No, why?” He said, “You maybe have CRPS.” We studied it in school. I did go to a pain doctor. It’s interesting because, by the time I got to Dr. Novella, I believe already created a third leg.
This is one of the ways that you cope with an untenable situation. You fix it. It’s never been clear to me whether that third leg contained my pain or that was the third leg I was walking on. I’m not sure which it is. That stayed with me until 2020 from 2012 when I was talking to my osteopath. He had students that he trains. He always asked me to talk to them about CRPS. I was talking to the student about my CRPS and I said, “I created a third leg. It’s still there.” It went away because it came to my attention and I didn’t need it anymore.
Explain to us the concept of you conceptualizing this third leg.
It was a surprise to me. I didn’t know it was there but when Dr. Novella, my pain doctor, said why I had CRPS, I could only say how I understood it. Let me give you a quick explanation. Oliver Sacks wrote a book called A Leg to Stand On. It’s a story of how he was hiking in the alps by himself, got chased by a bull, fell, broke his leg, had to get himself off the mountain, his recovery from the fractures and his rehab. He still couldn’t use his leg properly. He’s a very physical man. He’s a weightlifter, brilliant and everything was going for him but he couldn’t reintegrate that limb back into his body schema or system.
As I recall, the story goes that he swam regularly and the rehab doctor called up a lifeguard at the pool and said, “Sometime when he’s sitting on the edge of the pool and he doesn’t expect it, push him in.” That’s what happened. It got out of here, into here and he came back to him. It can happen when a physical experience is so traumatic, like an emotional experience is so traumatic that is not manageable. You fix it to go on with your life. There are a lot of ways of fixing it. You can deny it this way and that way. I denied it by creating a third leg where the problem plays. Thankfully, I was able to give it up because I didn’t need it anymore.
From the podiatrist, I went to the pain doctor because I also have idiopathic peripheral neuropathy and he did a diagnostic. At that time, they were already stopping doing lumbar blocks but that’s what he did. He did one lumbar block to see if it made any difference if it was the peripheral neuropathy I was struggling with or the CRPS. It was effective. I didn’t care which it was, I thought this was effective.
I knew it wasn’t going to fix things but what it allowed me was time to think because it did interrupt that cyclical alarm that was going on and on, keeping my foot purple, mottled blue, red, white and swollen. It was creeping up from my foot across my ankle. It went up about 5 inches up my leg. The inflammatory process does travel because your body’s trying to fix what somehow your whole system thinks is wrong. My understanding to the extent that I understand it or anybody does, is that it’s a positive process that goes awry. It doesn’t know when to stop. I had three lumbar blocks at that time, and I was given the chance to think.
I was also with an extraordinary doctor who’s not working anymore but he started the CRPS program at Mount Sinai. I’m not sure that exists anymore but he’s not practicing. He connected me with RSDSA, which people should know about, RSDS.org. You should know someone who has CRPS, Reflex Sympathetic Dystrophy Association. She’s a terrific behavioral therapist who I did go to a few times. She was busy and I had to fit in here and there. I did HeartMath with her. I’d already been in psychotherapy for years.
One day I came in and said to her, “I feel like a fly on a hot horse waste. I can’t settle down.” She said, “Would you like to try doing HeartMath?” I said, “Okay.” I did and managed to settle everything except for one thing. I said, “I got myself organized and I’m in control but there’s this one thing that’s not. It’s this pain in my foot.” She said, “That’s the CRPS. That’s your injury.” I said, “That little pain is what this is all about?” She said, “Yes,” and it went away. It was a little tinny pain. The baggage or basket that came with it was huge.
HeartMath made you realize that there’s a difference between the sensation we identify as pain and all the other cognitive-based aspects that we put on top of it?
It’s a biofeedback thing. It informed my body and brain how to calm myself to the point where I could feel the actual pain. I don’t think it’s just me. I studied NOI, Neuro Orthopedic Institute. They can work very well for me. The alarm system that set off, for me, linked to my complex PTSD, which has an alarm system that keeps going off. The alarm systems multiplied. It wasn’t additive. It was multiplicative.
The HeartMath allowed me to get control of that system that was in control of me. That changing of direction is what allowed me to experience the pain. Also, I trusted her. She was wonderful. She’s an art therapist and was trained in HeartMath and behavioral therapy. She was a very highly skilled and wonderful woman for me. I felt in control enough to let myself experience the pain. It wasn’t the end but it was pivotal. There were many steps along the way each one of them was pivotal. Not a single one of them would have worked by itself.
There’s this concept of a third leg, which is a coping mechanism that you developed early on. There’s HeartMath, which is biofeedback that helped you realize, “What systems are working here? What’s running my life? How do I manage and calm this down?” A good way to calm down the pain system is through HeartMath.
HeartMath was a vehicle that I was able to use to get control. It didn’t do anything to me. It gave me the power and informed me how to reach the power inside of me that allowed me to feel whole enough to tolerate experiencing the pain. It did not happen in my brain. It happened in my body.
That’s important what you said because so much we talk about the brain being responsible for pain or the brain and the nervous system, which technically it is, but it is still a somatic experience. Even if you’re using a cognitive approach, ultimately, you still have to integrate the body and all the awareness that goes along with that, the somatic approaches, into the rehabilitation of someone with pain.
Not just the neuromusculoskeletal body but the balance in the very largest sense, I got a handle on the original injury after a couple of years. I went for a few years protecting the injury. It wasn’t at all fully rehabbed but I was able to protect it and go on with my life until it happened again.
Have you had a flare-up?
I had a flare-up. At that time, I was also experiencing complex PTSD. I want to make the distinction that Bessel van der Kolk makes between complex PTSD and PTSD from being in a war, an automobile accident and having a life-changing diagnosis. That’s PTSD as acknowledged. Complex PTSD, as he makes the distinction, is being in an extended multi-year experience over which you have no control, which is continually traumatic, like fifteen years or something like that, which was my childhood. I was primed.
I read so much research on how trauma primes you for chronic pain. I could see why it primed me. If I was going to cope with this for the rest of my life, because it happened again, I wouldn’t be able to do it once I didn’t have the energy to do it. It took a humongous amount of physical energy to cope with this. I told my therapist in many years, “I’m going to research EMDR.” I knew that was the go-to therapy for PTSD.
I managed to find a wonderful therapist who did EMDR and hypnosis. She was also trained as an analyst but didn’t want to stay in that area. The person that I’ve seen for many years is an analyst and I do psychotherapy with her. I went on seeing her. What worked in giving me a handle on the complex PTSD was EMDR. I held something in my hands and it went buzz. We were talking about how the body gets involved or you have to involve the whole body. It got in there under my consciousness.
The physical experience for me was primarily terror. I don’t know what it is for other people. It could be other feelings. Also, there was a lot of anger and terror of my anger because anger is a big thing that comes up with a lot of pain and also with PTSD. There’s the terror of the anger, fear and injury. I passed out with the original injury. I heard somebody screaming. I was laying on the ground and figured out, “That person screaming is me. I’ll stop screaming.”
That isn’t only important but one of the very important aspects of dealing with chronic pain and the emotions that are mobilized by it to get into the unconscious level of the body where it’s acted out in our bodies. We act out our fears, anxieties, pains, distrust or mistrust. They manifest physiologically. To get a handle on that complex system, you have to address the system.
You’re exploring EMDR, HeartMath and still moving your body in healthy ways too because you’re a dancer and a PT. That’s a part of what you’re doing as well.
I never stopped moving, no matter what my experience was. When I couldn’t wear that boot, I walked anyway. I said to the second orthopedist, “I can’t wear a boot.” He said, “It doesn’t matter. It’s a stable injury.” I walked through the pain. One of the things that happen with CRPS is osteoporosis. I didn’t want to get osteoporosis. I didn’t know.
I asked people, “Is it a process of the disease itself or is it a secondary process that happens?” Nobody could give me the answer and I decided, “I don’t need the answer. I’m going to keep walking.” I had to farm out my dog for six months. I couldn’t walk her. I was limited in what I could do but I walked. I did everything that I knew how to do that I could tolerate doing and think of doing to stay in motion.
Have you been a PT for a long time?
Since ’91.
You’re also someone who has overcome chronic pain and complex PTSD. This experience has informed you as a person, how you look at chronic pain and how you treat patients. Based on your education and personal experience, how would you like to see the PT profession move so we can more effectively help people like yourself who are faced with CRPS and other comorbid conditions? What can we do better as professionals to help someone like yourself move through that experience faster, specifically the PT profession?
I have a broader answer to that. I don’t necessarily think it just applies to chronic regional pain syndrome. For example, I saw that PESI is giving a course on women in trauma. I called them up and said, “Can I get continuing education credits for physical therapy for taking this course?” It’s a crucial course for a lot of reasons, among them that we may lose Roe versus Wade or maybe a lot of rehabs that may have to come out of that. There may be a lot of pelvic floor rehabilitation.
There are many ways in which women from other cultures that are coming into our culture are traumatized and women in our culture are traumatized. That is specific to being a woman that will need rehab. PT does not give continuing education credits for that course. To me, that’s unthinkable that they would not see the importance of a course like that for physical therapists who are treating women who have been traumatized as women and not say that physical therapists take this course. Even the courses that Bessel van der Kolk gives. He gives the courses to everybody and he’s talking about the body. They don’t give continuing education credits for that course.
That’s why we started the trauma-informed pain care course here because our community realizes how important that component is when you’re treating someone, PT, nurse, MD or mental health provider, it doesn’t matter.
You have the skills that you got to get your credential but that’s not the profession. That’s the core. You build from that core out and you bring in whatever is out there that can support that core. The idea is that people are not directed into understanding the complexity of the brain and the mind. I haven’t figured out a bone to pick, which is, “What do I bring as a physical therapist to my practice?” Maybe they can’t use words like transference and countertransference but it happens in PT. I don’t know why they can’t use those words. Maybe they’re owned by the psychologist.
They are pivotal to our profession. OTs know about it. They do a psych internship. They understand the brain much better than we are encouraged to. That’s what I think and that would be valuable for people treating people with CRPS. Even RSDSA is not where I would wish it would be in terms of understanding the psychophysical complex, which is CRPS.
There are some people that it’s not true for them. I’m not saying this is true for everybody but lo and behold, you get someone for whom it’s true. You can change their life, not just get them out of pain. You can say to them, “Look in that direction. This is what I do,” but there is this whole other world out there of ways that we can encourage people to grow beyond what we get them so that they can walk. “Walkout there, learn and do.”
The psychosocial skills support that is what it comes down to. They’re important when we’re talking about populations where trauma is so involved and having CRPS. Even if you don’t have a history of ACEs, Adverse Childhood Experiences, CRPS in and of itself is a medical trauma because the pain and disfiguring that people experience is traumatizing. The course of treatment rarely ever starts smoothly.
Out of all the patients I’ve seen with CRPS, it took them a while, as you eloquently did, to put together the pieces of the puzzle so that they could resolve their condition. However, episodes like this help people understand what’s happening and what happened. It provides hope that they can find with those components that they start to put together.
Sometimes they’re individual practitioners or treatments. When that happens, then people realize, “There is light here. I do see benefit happening from this. I do see it starting to change my life.” I appreciate you coming on to the show and sharing your experience, both from the practitioner side as well as someone living with CRPS. Tell us how we can follow you and find out more about your work.
I have a LinkedIn website if you look up Deborah R. Brandt. It’s time for me to get a website for myself so look from a website coming. I hope that I can put some more writing. I have some writing. If you’d google me, I wrote a blog for NOI and a blog for RSDSA about chronic regional pain syndrome and chronic complex PTSD. I’m there a few places.
If you know someone who is struggling with CRPS, Complex Regional Pain Syndrome and complex trauma, make sure to share this episode with them. Share this with your friends and colleagues on Facebook, LinkedIn, Twitter and Instagram. If you’re on Instagram, take a screenshot of this episode and tag me @DrJoeTetta. I’ll be sure to tag you back. Thank you for joining and we’ll see you next time.
Thank you so much for having me.
Important Links:
- Dr. Deborah Brandt – LinkedIn
- A Leg to Stand On
- RSDS.org
- HeartMath
- PESI
- NOI – When is physical pain emotional pain?
- RSDSA – When Is Physical Pain Emotional Pain?
- @DrJoeTetta – Instagram
About Deborah R. Brandt, PT, DPT
Deborah R. Brandt is a retired Doctor of Physical Therapy, Certified Movement Analyst, dancer, choreographer, and educator. She currently teaches about issues regarding pain and human gait in “Dynamic Embodiment,” a program that trains somatic movement practitioners. She also teaches her own movement program, “Energy Exercises,” to home-bound seniors via the Self-help Virtual Senior Center.
Dr. Brandt’s personal experience with and study of Complex Post Traumatic Stress Disorder and Chronic Regional Pain Syndrome, a complex psycho-physical phenomenon, has enriched her comprehension of both issues and given her unique tools to communicate her insights and knowledge to others.
She has worked in schools, hospitals, and home care with a special interest in the rehabilitation of people who have neurological problems, and preschool-age children who are blind and have multiple disabilities.
