In today’s episode, we hear Jennifer Smith’s journey with CRPS, and how she uses movement and her mind strength to stay ahead of her pain. Her best friend Sara joins in to comment on the journey as well.
OLIVIA: Hi, and welcome to the first episode CRPS voices. I’m your host, Olivia Simon, and I’m incredibly excited to be launching this podcast. When I first had the idea of interviewing other folks with CRPS, I didn’t quite know where to start. Eventually I joined a Facebook group for people with CRPS, posted about my project idea, and waited for a reply. Today you’re going to hear from someone who responded to that post, and decided to trust a total stranger with her story. Her name is Jennifer Smith…
JENNIFER: Hi! My name is Jennifer Smith.
OLIVIA:…and she was first diagnosed with CRPS in 2022. After talking to Jennifer, she suggested I contact her best friend Sara to get her perspective on the diagnosis as well. Jennifer and Sara met about 9 years ago at work on a cigarette break, and the rest was history. I’ll let Sara tell you the story.
SARA: We just started talking and she had made a joke about “your mamma something last night” and I just deadpan looked her in the face and I said, “Well my mom died several years ago, but thanks for bringing that up!” She said, “Oh my god I’m so sorry” blah blah blah and then she said, “Your mom was sorry last night!” She goes, “I don’t know why I can’t stop!” And we have been best friends since. Were the red string that connects people. We’re the opposite ends of each other’s strings.
OLIVIA: Jennifer has 4 biological children, all boys, and 2 step children, a boy and a girl. Jennifer holds a bachelor’s degree in psychology and her husband owns a heating and air conditioning business, and she does the business end. She’s been a lifelong and avid runner, and something that I discovered pretty quickly that are extremely important in Jennifer’s life are her animals.
JENNIFER: We have…I call it a mini ranch. We have alpacas and chickens and five dogs, and I’m very busy with my animals.
OLIVIA: I’ve always wanted to pet an alpaca. I’ve heard they’re just the most amazing creatures on earth.
JENNIFER: They’re so docile, they’re amazing. I love them so much.
OLIVIA: In the fall of 2022, Jennifer went in for a bunion surgery and it’s the aftermath of this surgery that’s what started her CRPS.
JENNIFER: It was October 2022. I had lapiplasty bunion surgery on my left foot. I was experiencing a lot of pain from the bunion. I’m a runner and the bunion was getting to the point where after I ran, it just throbbed and hurt so I had the surgery. So after the surgery, you know everything seemed fine. It was probably at week 2 post surgery. I was still wrapped up in a bandage and it felt like the bandage was rubbing my heel. It was very irritating, and eventually I cut the bandage away from my heel, and there were actual pressure ulcers on my heel. I was in a surgical boot that suspends, but I got pressure ulcers. And then, I think it was week three, my skin began…I couldn’t even touch the skin down there. Anything rubbing against my skin drove me crazy, you know, so I just completely cut the wrap off on my foot. And then my foot was swelling…it felt like..oh it was so painful. It felt like metal claws were digging into it and then like mini tasers were tasering it. I was basically bedridden because there is not a mobility device that allows you to keep your foot elevated and move. If my foot dropped below my heart it turned a deep purple color and it was unbearable pain. I wanted to go for walks with my husband again, you know, and be able to take the kids places, and it just was awful. And I’m not a religious person. But it was in December, I was like, well, you know what? Just throwing this out there. If you are a God, you know, please let me walk again. You know, if I can walk again, I don’t even care if it’s painful.
OLIVIA: Sara, what was it like for you to watch Jennifer go through this extreme amount of pain with very little clarity around what was going on?
SARA: I don’t know…to watch her go through that process was just, you know, from my perspective, it was heartbreaking. She is that active runner, up and attem, 5 llamas, 38 chickens, kids and dogs…and she was the up and active person and to watch her literally be bedridden for months was awful.
SARA: What was scary is I really thought that when she told me what was happening after her surgery, I thought there was an infection. You’ve got to have an infection somewhere in there. And the doctors kept to the doctors and they said it’s not an infection. So then she started sending me pictures, and I really thought her foot was dying. I thought it was turning necrotic and I thought she was going to lose at least her toes if not her whole foot at first. Because every time she would put it down, it would turn black. Not just purple — black. And I kept saying you know you’ve got to get back to the doctor, but she said they’re telling me this, they’re telling me that, the surgeon is saying it’s not his fault. I was like you have to get to a different surgeon! Something is definitely not right.
OLIVIA: Jennifer, what was it like for you when you first got your diagnosis?
So I read so much because I had never heard of CRPS (RSD) until my surgeon said, “I believe you have RSD.” They wouldn’t give me any kind of pain medicine or comfort to relieve me of this. I feel like they thought I was a drug seeker. And I was and then finally my husband called their after hours number because I was just in excruciating pain. I couldn’t sleep…I couldn’t…nothing! And he called and said, “This woman has had four children. She knows pain! Trust me, she needs something.” My doctor said, “It sounds like nerve pain to me,” and prescribed me GABA and I am still on Gabapentin today.
OLIVIA: Was there a turning point for you in how you started managing your CRPS?
JENNIFER: I have a son who’s in the Air Force but he has always been very athletic —a leader. He’s very strong and strong minded and he told me that it’s all in my head. And I said, “No, it’s not Braden! Look at my foot!” And he said that a body in motion stays in motion. Remember that Mom. And that has always been stuck in my head.
OLIVIA: I think there are two very powerful things Jennifer mentioned in this part of our conversation. The first is the struggle for close family, even a son to believe that what was happening was real, especially to somebody as vibrant as Jennifer. And honestly I don’t blame him. It’s really hard to wrap your mind around the pain of CRPS. I actually asked Sara if she had any disbelief at first about Jennifer’s diagnosis and why it was hard for her to believe.
SARA: I did. I mean, I think that’s everybody’s first reaction, especially to somebody that is so healthy as she was, you know. Like, it can’t be as bad as you’re saying… are you sure that these are the sensations you’re feeling? Are you sure that you can’t just get up? You know, and of course, you know, we doubt it. I think that’s everybody’s normal reaction at first to any situation like this. Over time, I just felt like, man, I mean, this is happening. Then, you know, she got the diagnosis. “Well, this is what they think it is.” And we started researching it, you know? And it was to a T what was happening to her, and then the realization is this a long time debilitating thing. This is a life altering situation. And I think that you never want to see somebody that you love like that. And that’s another thing. You know, I think that you don’t ever want to see somebody that you love and care about be in that much pain. So the initial reaction of, “Oh, it’s not happening” is easier than to accept that they are in that much pain, and they do need help.
OLIVIA: A body in motion stays in motion. This was the second thing Jennifer’s son said to her, even through his disbelief, the only rational advice he could give to his mom, a desperate plea to not stop, to not give up, and to find a way through the pain — just to take one step. And this is exactly what Jennifer did after she was helped by a spinal block.
JENNFIER: But I had received an epidural steroid injection in my back, and it felt like when they did that like a ball of fire was being shot down that leg. But it did reduce the swelling enough that I could squeeze my foot into a shoe and I started being able to stand. I paid a friend to come over and clean my house because my husband works so hard and my house was falling apart. It was driving me crazy! And I told her, “There’s this mental block. I can’t take that first step. Like I think I can do it but I can’t.” So, she grabbed my hands, and she walked backwards while I walked forward. And then eventually she let go. And I could take probably like four steps before the pain became unbearable. I kept every day going: “Okay, even if it’s just one more step than before, I’m going to keep going.”
OLIVIA: If you guessed that Sara was the friend who helped Jennifer take her first steps, you’d be correct. It was deeply moving to hear the same story but told from Sara’s perspective.
SARA:I had gone over there to clean the house because her in-laws were coming for Christmas, and she couldn’t even clean the house. She couldn’t get up, she couldnt do anything. So I went over to the deep clean house and my daughter came to groom her dogs. So we went over there and I just said, “Get up. We’re getting up.” She had been to physical therapy and she had actually put weight on her foot and I was like, “Now get up! We’re walking.” And she was like, “No, I can’t, I can’, I can’t.” I’m like, “No you are. We’re doing it.” And I got her up and I held her hands. I walked backwards as she limped about two steps at first, and then she did it, and then it just kind of went from there. I just started walking her around the table in our living room around her house, holding her hands.
OLIVIA: What was it like for you to be the person who helped her take her first steps?
SARA I knew that she would do it with me because she trusts me. And I think that that’s kind of what it had to be. She knows I’m not gonna let anything ever happen to her just like I know if I was in that position, she would be that same person for me — to hold my hands and say we’re gonna get through this together and mean it. And I think that it had been a mental block for her because she was afraid of the pain. And I just tried to take some of that away from her, you know, and I feel like when I held her hands and said, you know, trust me, I’m not gonna let anything happen to you, that she was able to do that. And it makes me feel good that I could be that for her, because I really think that she wouldn’t have done it if I hadn’t done that with her. She wouldn’t have taken those first few steps to know that she could do it.
JENNIFER: And so I began taking one or more steps. “I’m gonna go across my bedroom today,” and I was able to do that. And my heart longed to go see my alpacas. So, it was probably maybe two or three weeks after I started going a little bit farther that I was like, “You know what, I don’t care.I don’t care. I’m going to see my alpacas.” So I walked out through my back door out to the pasture. I was in a lot of pain. But I pet my alpacas, and the joy of that was incredible. You know, I cried. I missed them so much. Just doing those things, you don’t realize how important the little things are until you’re in the situation where everyone has to do things for you. I’m very independent, and that drove me crazy.
OLIVIA: So despite the unbearable pain and how did you motivate yourself to keep going?
JENNIFER: As I read and joined Facebook groups, it just was awful. And I was like, “God, I just feel doomed.” But then I kept hearing my son’s voice in my head: a body in motion stays in motion. I was like, I just got to keep doing this. And it was so strange. As I took those first steps, it hurt and I had to recover and lay in a chair. But the more I did that, the more I could do, which was really interesting. And I was like, “There’s something to this.” And I realized the more I thought about it — you know, because I went out to see my alpacas or I played with my dogs — and I’m like, “Oh, I just went like 30 minutes without feeling pain. How did that happen?” And so I was like, “Oh, I need to distract myself.” I am so scared of not walking again that from the moment I get up to the moment I go to sleep, I am moving. I just stay busy, and I can run again.
OLIVIA: Despite her initial fear of movement, and despite the constant stress and staying active, a switch flipped for Jennifer by being a body in motion. Jennifer runs. Saying that makes me so happy for her, beyond what I could possibly express. As our conversation progressed, we started talking more about the mind body connection and how our thoughts, attitudes, and mental strength can impact our pain. Jennifer told me a fascinating story of a doctor she went to see to get a ketamine infusion, which is a treatment option available for people with chronic pain. Upon meeting the doctor, he revealed that he too had CRPS. Jennifer was shocked, and so was I hearing the story. The doctor talked to her about the importance of dealing with emotional pain in order to understand the root of her physical pain.
JENNIFER: Well, society makes us…we stuff it. It makes us not deal with appropriately how we should our emotional pain. And he said, “When you have a surgery or you get hurt, the mind and the body are so connected. In modern medicine we just throw pills at it and shots and we just treat the body never the mind. So when you have a surgery or an injury, something gets mixed up in the central nervous system and that emotional pain somehow turns into physical.” He was like, “You need to start working on ways to not be angry, learn to forgive people, be positive, help people, put other people before you.” And he goes, “I want you to do these things.” And he gave me a read out and said to read Dr. Sardis, and he said, “Within two weeks, if you aren’t 90% better, I’ll gladly let you pay me for a ketamine infusion.” I just started laughing. I was like okay. And I am. And I do do those things.
OLIVIA: Whether or not you believe in the connection between emotional pain and physical pain, exploring that connection helped Jennifer. We found ourselves in a pretty meta conversation about the consequences, but extreme importance of talking about pain.
JENNIFER: It’s really a mind thing. And I notice when I’ve read Facebook groups, or what other people have I’m like, “Oh, good God, I have got to stop reading this stuff.” Because the more I did the more it hurt. The more I talked about it, the more it hurt. And so I was really kinda almost nervous to do this with you. And thinking about this and talking about this is absolutely not what we should do. But I am absolutely all for giving my message and your message out to people who are suffering tremendously. I believe the more you stay still…it’s like, if you let it take you will.
OLIVIA: Yeah, I totally agree with what you said about not staying still and not letting it take you. But I do wonder if it’s actually a bad thing to be talking about CRPS. I understand the fear that by talking about it, you’re giving it mental space and that could allow it to take over but I wonder… Do you think it’s possible to reconcile our diagnosis and our identity, that we might be able to talk openly about CRPS and just have it be a part of who we are?
JENNIFER: As a matter of fact, I think it is possible because I feel like I was able to overcome the excruciating pain that I was in by using my mind strength. I think you can absolutely, if you work on it, be able to help other people by sharing your story with CRPS because your mind is stronger. Your mind is so powerful, and we just think we can throw a pill at something or give a shot and we’re good, and the physical part of healing is just so underrated.
OLIVIA: Do you ever feel like CRPS has a mind of its own?
JENNIFER: Yeah, I see what you’re saying. Yeah, I can see how it has a mind of its own. But I feel like my mind is more strong than it, if that makes any sense. You were talking about the negativity around CRPS, and that you were a little hesitant to do this, but the impact it can make is huge, and that is the reason I chose to do this with you. Because although I may have a setback, I believe that I feel like no one listens to me — even those with CRPS. I have pictures and videos, and it was just awful. And I feel like if more people… I just want my voice to be heard. I want someone to really hear me because what I’ve done works. It works and I can control my pain.
OLIVIA: Jennifer’s relationship with CRPS has completely changed since she introduced movement into her life. Perhaps that would have happened without Sara’s help. But in this version of the story, Sara was really the person who was there to help Jennifer start moving in her darkest hour. I asked Sara what advice she has for people supporting loved ones with CRPS.
SARA: Become an active role in their recovery. If you love a person and you care for a person, you can’t just watch them wither. And that’s basically what we were doing — we were standing around watching Jennifer wither. And you know, sometimes people do need that kick in the ass, that, “Get up. You’re not doing this. We’re not doing this anymore.” That’s what I told her. I said, “Get up. Get up. We’re not doing this.” We’ve always been there in the course of our relationship to help each other out as we knew how to do it, and I just could sit there and watch her lay there without trying something. And like I said, it could have completely backfired on us, and I could have been the reason why she was, paralyzed or whatever. But, fortunately that’s not the way it turned out. I just feel like for the people that are listening that aren’t actually the ones with it, be the support. Be the support. Be the support literally, mentally, and physically. Be a hand to hold theirs. It’s a long road, and it’s a rough road and nobody wants to fight a rough hard road alone Romola.
OLIVIA: Jennifer also had some advice that she wanted to share that helped her in her recovery. In March of this year, she purchased 25 baby chickens. She wasn’t trying to help her CRPS but the process of taking care of them has provided her with some of the best rehab she’s found.
JENNIFER: You have to feed them, water them, to make sure they’re not too hot, make sure they’re comfortable, watch out for predators, clean their poop. I mean, you’re constantly dealing with these animals…and not to mention that, but they are very hilarious to watch. They’re mesmerizing. They’re like little raptors. But since March, they have been such a great distraction for me, because I’m always like, “Oh God, where are they? Is a hawk getting them?” I always have to do something for them, and it has helped me so much as a distraction. So that’s something I wanted to talk about: find a distraction. Something that completely consumes your mind. If it’s a pet, if it’s helping people downtown at the homeless shelter, or something that you can become consumed in or involved in. It has helped me so much and it’s just a suggestion.
OLIVIA: Before starting this project, I had talked to very few other people with CRPS in my lifetime. It’s both very rare and very invisible. Jennifer is one of the first people I’ve had such an open conversation with about this diagnosis. I expect I’ll be moved by every conversation I have, but I found myself crying after I talked with both her and Sara. Their determination, friendship and love enabled Jennifer to walk again. I want to leave you with this final thought from Jennifer which I think captures her fortitude:
JENNIFER: The only time I feel pain to this day is when I get in bed at night and lay down.
OLIVIA: When you stop moving?
JENNIFER: When I stopped moving. That’s why I never stop moving.
OLIVIA: A big thank you to Jennifer and Sara for contributing their stories today. This podcast was produced and edited by me with great thanks to friends and family for their support. And thank you for listening. Until next time, I’m Olivia Simon, and this is CRPS voices.