She Escaped Chronic Pain—Then Long COVID Changed Everything

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I have yet in, in the hundreds of people that I have worked with chronic pain, I have yet to meet a woman that has not had her pain blamed on her weight or anxiety, whether or not she even has anxiety.

Imagine battling chronic pain for years, finding your way out against all odds only to be hit with a whole new set of medical challenges that no one seems to understand. That's exactly what happened to today's guest, Amy Eicher. In this episode, Amy takes us on her journey from being dismissed and misdiagnosed to becoming her own best advocate. She shares the hard truth about navigating a healthcare system that often doesn't. Listen, I. The reality of living with long covid and the surprising lessons she's learned about resilience, pacing, and self-advocacy. These stories are too common, but ones healthcare professionals must hear, so we can better honor and respect the expertise that a patient holds. Whether you're a clinician, a patient, or someone who just wants to understand the human side of chronic illness. This episode is packed with eye-opening insights and practical takeaways. Stick around. This is one conversation you don't wanna miss now onto the episode.

This is the Modern Pain Podcast with Mark Kargela.

Amy let's give people a little bit of an update if we'll link the episode before we, you had a quite the journey with your challenges around SI joint and fusions and really coming out the other side in a much better spot and, challenging maybe the status quo of why you got there and really helping a lot of people with your coaching will definitely get into that, but I'd love if you could update people on what you've been dealing with as of late with some of your new engagement with the healthcare system.

Sure. So in, in brief summary back in 1992, I got hurt as a college athlete, had SI joint problems. In 2014, I finally resolved that through a deep dive on pain science. And since what, 2018? 18, I have been coaching other women in chronic pain because I was no longer in pain and I'd learned all this stuff and I had clawed my life back. And I thought maybe that would be useful to people after being in the clinic as a PTA. I span both sides of the table for anybody that's new to me. So in. December of 21 my darling partner and I went out to dinner and then went on a road trip down to New Orleans. Came home and Christmas Eve my glands were swollen and I was quite certain that I had strep throat. Went in, turns out, I had COVID! Ha! Surprise! And I was like, but strep throat. And they were like no, no strep throat, definitely COVID. And after about 12 days, my heart rate was really elevated. I was extraordinarily fatigued and it felt like I couldn't catch my breath. And then I think there was probably some pressure on my chest, which my. Primary care would later ask me a bunch of questions and be like, yes, Amy, most people would call that chest pain. And I was like, Okay, doesn't really feel like pain I've experienced, but sure, we can call it that. And he was like, so most people would have gone to the ER. And I was like, oh, I don't like the ER. They've, they treat me like a drug seeker. I don't go to the ER. I don't do that. So there may be some problems that one occurs after being a chronic pain patient and then actually having medical emergencies and not going

I'm curious about that. Cause you, and we spoke to this a little bit before going on, but like you went into your, this issue around your SI green to the medical systems view on things and especially how you hadn't been exposed to pain science at that point. You had went down a road that many patients before you went down and, obviously. Took you climbing yourself out, which again is always the interesting thing. A lot of the folks in similar situation like Gillette is another one who found their way out on their own, despite health care, let alone with health care. So I'm curious when you go into health care, knowing that they're probably not as prepared to deal with. the complexity of your situation. Not that folks out there aren't trying to help people, but we know that we're not arming healthcare professionals in their graduate education, their entry level education, knowing much about pain. I just saw somebody posting, they lectured in a medical program and they were actually shocked. it's still a big issue that folks that we encounter in primary care and EDs aren't really well versed on pain. I'm curious, knowing that, how it affected your engagement this go around.

so I go into any new medical professional armed with What I think so first of all, I don't access medical care unless I really can't solve it on my own and I will. That's the 1st thing I tell whoever it is, right? I am here because I cannot solve this on my own. I've been trying for 2 weeks, 3 weeks, 4 months, right? I give them the duration. I tell them what I've tried in a bullet point list and try to keep it to less than 60 seconds and I rehearse it before I go in. So that's where I start. And then I, because I do, because I have split the table I come in usually with some things I want ruled out. And I will say, I am concerned. So what ended up happening was I went back to prompt care. They said, you still have COVID. And I was like, cool, but we're at like 14 days. And my heart rate is like cookie. Like I'm laying on my couch and my heart rate is 140 and my O2 stats are dropping to 86. And then I feel dumb as a rock because my brain hasn't had enough oxygen. Do we maybe want to like, look at that? And nobody knows what's going on at this point, right? Like long COVID in December of 21 really isn't a thing. So there's not a whole lot to look at, other than the fact there is this community that is continuing to experience awfulness after the virus, typical incubation or whatever. I complain, they tell me I'm just anxious and they send me home. And the minute I hear from any doctor it's just anxiety or it's your weight. I know it's time to move on.

I apologize to interrupt. I was actually just about to ask you this because I remember when my wife, I don't know if you remember the episode or if you heard, but she had a microembolic stroke. She lost strength in her right side, facial droop, all the whole nine. And I remember sitting there in the room and I was ready to reach across strangle some people because they're like, are you sure you're just not having some anxiety? The lady's right side is weak for God's sakes. I don't think it's her anxiety,

And I think it's important for our listeners to hear that. I have yet in, in the hundreds of people that I have worked with chronic pain, I have yet to meet a woman that has not had her chronic pain blamed on her pain blamed on her weight or anxiety, whether or not she even has anxiety. I do now. Thanks to y'all y'all.

No

Yeah you bet I get in with a new provider and you better believe my blood pressure is higher than it is when I'm with a provider that I know and trust like darn tootin because I go in going, am I even going to be believed? So I go to my primary care. We're like. Sympatico, he gets me, he walked with me through all of the pain stuff, and then has watched me come out of all of that, and we've had great conversations around that. So when I said, hey, my heart's doing like really weird things, my normal resting is like in the 50s, and I'm currently in the 120s, 130s, and I don't feel good. I feel really bad. And it just so happened that while I was in the office and the, I was in the, pre intake or whatever, my heart did its thing. And the nurse triaging me was like, Are you okay? And I was like, it's fine. Now it's when it drops that I start to look all And then it started dropping and she was like, Oh my God, you look like you're going to pass out. And I said, it's a good thing. I'm sitting then. Huh? I have inappropriate sinus tack and I had to go through the normal cardiologist who, Let me know that I was overweight and I was like, yeah So this is all happened in the last nine months. I gained like 50 pounds in nine months I went and like from fairly normal 40 something year old woman to like completely menopausal like all of my Chick hormones just dropped off and we were like, okay, that's weird. Turns out that happened to a lot of women in their 40s after a COVID infection, but we didn't know that yet. That research was in process, hadn't been completed yet. Got kicked into menopause. We put me on HRT, hoping that would help this brain fog and this tired, sluggish Stuff and that didn't work finally got to the electrocardiologist after a five day stay in the hospital, which I can't even tell you about because I will get so angry that let's just say that all of the bad things that every other guest that's experienced stuff has talked about that happened. So I'm on the table, they're fishing the thing up through my femoral artery, right? I'm awake as can be, the anesthesiologist behind me, we're on a first name basis at this point. Because I don't want to feel any of this. There's a student with the doctor. It gets to about my belly button. He's advancing, right? And I point and I say, I feel tugging right here. Doctor says, you can't possibly feel any tugging. Student says, she's pointing right where we're at. And I'm like, love you. You're going to be in so much trouble. Like when you're done here, I basically leaned my head back and said to the anesthesiologist, is it okay if we turn that up some? And he was like, yeah, you got it, Amy. So he turned me up and then I became much more entertaining until they had to go through the septum of my heart to get what they wanted. And then they knocked me out. So I was no longer troublesome to them. But it was amazing to me that in the procedure while it's happening and they can see it, that they're telling me, no, that's not, you're not feeling what you feel like, what is that? Why do we do that? What? I know you can't answer that, but if your patient is saying something, and I know we're mostly physical therapists here that are listening to this, but if they're telling you something, how about we just believe them?

I sometimes wonder if it's just it doesn't make sense, right? Maybe 99 out of the last 99, but this hundredth patient feels it and it doesn't fit the rule and Therefore, they must be making it up. Why don't you say I don't know. I think that's just the hard thing for folks. And I don't know if it's just a, clutching to your status as a all knowing, expert where I think the X, the best experts I've ever seen are the ones that are willing to say, you know what, I'm not sure why you're feeling it there, but let's figure some things out and see what we can do to make you more comfortable. And. Instead of invalidating your experience. Cause they just they didn't have the answer, that it's because some fancy medical explanation type thing. Yeah

and I forgot how I got to the hospital. So I had to have a stress test and climbing the stairs, my heart rate was getting in like 180 to 220. I get I'm out of shape, Mark, but I'm not that out of shape, right?

that's like higher than the highest intensity hit training you can do right there

And I'm like slowly meandering up the stairs at 180, 220, right? As you can imagine, having your heart rate elevated for any amount of time when it's that high makes you a little tired when you're done. So we put a halter monitor, which led me to a stress test. And then during the stress test, I started throwing out S. V. T's everywhere and those didn't die down and my blood pressure skyrocketed and my heart rate skyrocketed and everybody in the room freaked out but me because I was like, but this has been happening for four or five months. I keep telling you all. I'm not scared because I have yet to pass out and nothing terrible's happened. I just need to go to sleep and it will go away. And they were like, no, you need to go to the ER. And I was like, oh, that's way too expensive. No, I don't. So they let me like stay there for 15 minutes. Like three cardiologists came into the room to watch the monitor. Everybody but me was flipping out. And I was like, I've been telling you all this at every point.

Isn't it interesting? Our integrity is challenged, like that this, it just can't be like when they don't, when people don't fit the textbook, which a lot of our people, as you well know, when person's in pain don't at all. So the, just absolutely invalidation that folks go through until. apparently the objective proof backs up their experience.

smacking you in the face and going off as an alarm in the stress test room, right? Now, I will say that we are, there's approximately 400, 000, 000 known cases of long COVID worldwide at this point. So chances are. As a provider for musculoskeletal, whatever, you're going to come in contact with somebody that is experiencing long COVID symptoms and has no idea. that is highly likely, so take a cursory course. Get yourself acquainted with, the over 200 symptoms. That are out there, but like POTS is super real and you had a great podcast on that As is post exertional malaise, and we do not treat that the same way that we treat deconditioning.

Wanted to, Daria Oller we had on who's got long COVID and long COVID. physio is a great resource for folks to, to get into it as your clinician. Cause I agree. I think Imagine, Amy's journey, your patients are going through the same journey of all these weird symptoms that because we don't have a litany of RCTs to perfectly explain it, healthcare doesn't really have, unfortunately, a great way to deal with it. And unfortunately the reaction is invalidation and all the things that you went through. Yeah, and then Emily Rich's episode on POTS, huge. I'd love if we can, yeah, I'd love if we can get into your post exitional malaise thing. Cause I think. You know how we are as physios, you're a PTA, and you've been doing this, you're back in the clinic, we'll talk about that. Our solution to most things is exercise, right?

Exercise your way out of it

Yeah, and then we almost invalidate people and shame them because you're not moving, you're not exercising, yet that is not the best solution for a lot of folks who deal with post exertion release. I'm wondering if you could one, speak to your experience of what it's like having it and then how your approach to thinking about exercises may be evolved as a result.

Yes, so I will tell you once I got my heart results back that said I did not have any inflammation in or around my heart. I was like, all right, I just got it. I just got to exercise my way out of it because I'm a PTA and I don't know how to do this. Wow, is that dumb? You don't know what you don't know. Until you learn more, right? So I started walking thinking it's been, it's been like 6 months at this point. They fixed the SVTs. They did an ablation and he was also able to find some of the misfiring nodes that were causing my heart rate to skyrocket. So he was able to reproduce that by poking at stuff in my heart, burned it. And that stopped the astronomical heart rates. Like it still is. Disequitous and they labeled me with inappropriate sinus tachycardia. So it's not like POTS is much more positional. Mine just cuz,

Yeah. Just does it regardless of position.

right? So I wish I could lay down to make it better, but I, it doesn't like I can be asleep and it can hit 120 just because any shot of adrenaline will make my heart rate skyrocket. So I can't be stressed out. Yes,

your rides at Disney world? Like I know, you talked about this. Is that something I think you've willingly decided there's things you're willing to expose yourself to in, in the service of your values, which Disney world I know is one of the

Is one of my values. If I could turn my camera, you would see my wall of ears and

Love it.

It's next to me, but yes, I decided like the whole family decided we were going to take a trip to Disney and my partner also has long COVID, but he wouldn't call it that. He just says he still gets tired at unusual things. So we postponed it a year because he and I were both like, I don't think we can do Disney. I don't think we're going to survive the experience. And I knew from all the pain stuff that like, oftentimes when you're in an environment that you love, when you're doing things that you love, you can do a lot more than you think you can, because I talk about the cup from Greg Lehman I've taken a ton of stuff out of my cup by being in this environment, having it match my values, being with my family, doing all these things. So there's a lot more room to make, yeah. Harebrained ideas, like walk 12, 000 steps at Disney.

Did you run up against any people like saying, what the hell are you doing? Be it medical or anything to say you shouldn't do that. Did you have anybody or

by that so I got rapidly discharged from the cardiologist because they're like there's nothing else we can do for you lose weight. And I was like. We're done. We're done here. We're done here. And my primary care, like I cannot imagine Dr. Hancock saying that to me basically what we've done for the last four years is I come in with all the inflammation research and stuff. And he's on the post viral reserve research stuff. And then. We talk and I'll say, okay, patients tried this nicotine patch or patients are trying Ozempic or patients are trying low dose naltrexone. Here's what the patient community is saying. Here's what research says about the inflammation and these things. You take all your medical brilliance and tell me if you think that's applicable to me. Like we talked hyperbaric chamber at one point and he was like, I don't think that's worth it. Like not for you and your symptoms and your presentation, maybe somebody else, right? So we just go back and forth with ideas. And then it's. Are you willing to prescribe to let me try that? Or Amy, are you willing to take this? And try my suggestion?

It, I think this is a great example of a doctor that embraces shared expertise, right? That That, whole creating the third space that you hear Quintner and Cohen and those folks where they're willing to shelf their ego. Contribute their expertise when it's helpful to the context in front of them, but not again force feed it to somebody and really let a patient have, heaven forbid, say and what goes on with their body and what they do. I think that's a great experience. And and primary care, right? It's, sometimes I think

is my primary care doctor. I would also like to add that this is not me going in saying you're going to prescribe LDN at 2. 5 for 2 months, and then you're going to up it to 4. 5 and we're going to like, that's not what's happening. That's Hey, I read this thing on LDN. Hey, it crosses the blood brain barrier. I don't really understand what that means. Hey, people are saying that this is helping with autoimmune diseases. Which is mostly inflammatory to my understanding. One, does that sound right to you? And he's yes, great. Do you think it, do you think that this is a worthy. Trial, right? And then he tells me what the risks are. He tells me what he thinks may or may not happen. And then we usually agree to try things for 3 months. And then I check in via virtual chart every month and tell him. Then I just give him a PT update, 25 percent blah, blah, blah.

And to me, this is a time where the N equals one is the experiment there. You're not what RCTs like massive population RCTs or meta analyses. Are you going to lean on for, yeah, exactly. Like you have to create a clinical situation where this is an N equals one. Like you said, identify risks, be fully transparent. Makes some shared decision making and, give to, I think that's he's great example of somebody who's, exemplifying,

I wish

what it is person centered.

I wish we could get him like on a teaching circuit. Just so that he could share things like this, right? We went through a bunch of different. Heart medications and I'm so healthy and my blood pressure is so low that all of the medications that we tried to lower my heart rate also lower your blood pressure. So I was like, darn near passing out because it was taking my blood pressure too low. That's also fun because there's others that do really well on those medications. But not all of us.

Yeah. And that's, again the, let's give it a try and see what happens and be willing to, and I think it's probably identifies a lot of the healthcare folks that are really able to navigate that. That's just, great clinical reasoning, critical thinking to be able to. Navigate that and problem solve with people. And again to put the ego aside and Hey, I don't know the answers. Let's figure it out together,

And

and I'll use my expertise to make sure you're not doing something that's dangerous to yourself, I'm also gonna be flexible to say, I don't know. And yeah, maybe we should try it. I don't know.

try it and see what happens now. I feel like it's my responsibility as a patient to be honest, give good feedback. And I think I think 1 of the interesting, the retrospective on it from my perspective is. When I got hurt at 18, my expectation was for medicine to fix me. I have no say, I don't know anything. I'm trusting every PT, every doctor, every, every medical professional. I saw their job was to fix it. time around, even though I have a diagnosis is that are outside of long coat they're right. It's, came. Long before did post exertional malaise, which I will eventually answer that question came long before. COVID, right? These are things that are known out in the metaverse, in the medical universe, right? But I wasn't expecting anyone to have any singular person to have the singular answer. And I also knew pretty early on after the first year, I was like, okay, I this is me? This is what's going on, and I can do what I did last time and waste another 20 years not living, waiting for somebody to fix it, or I can live my life with the limitations that I now have. And let's be real, Mark, those limitations were like, I couldn't drive 15 minutes to my partner's house. I had to be driven or be picked up because I couldn't drive a car safely. So the first year I basically laid on a couch and that was also when hospitals were super full. So I was like, okay, so if I turn blue, I need you to go to the dive shop with my dive card and I need you to get a tank full of air and then go into my attic and get my, like my scuba gear. And that's the way we're going to deal with Amy Needs Oxygen. And my family looks at me like I was crazy. And I said, PTAs are supposed to problem solve. I am problem solving. I'm not waiting in a hospital waiting room to die and get COVID again.

Yeah.

are no beds. Nobody's dealing with this. This is not a medical emergency. This is how we're dealing with it. So the creative thinking, the not waiting for a provider to fix me and saying, okay, I'm going to figure it out. I have to keep doing things of value to me. I can't let my life waste away. This just is what it is. And it was like radical acceptance early on,

So if you could like, and I know you already do this, you coach people who are going through chronic illness and chronic pain and stuff, but what are your thoughts on people? Because I think I just, experiencing some people who might get way out in left field on the internet and on, a lot of conspiratorial and doing all sorts of like treatments that are almost sometimes putting themselves at risk and like way off of, but

way off the beaten path.

Yeah, which, and I, again I think we should give people the freedom to choose what they want, but in, when you're engaging with a healthcare, we have a duty to ascribe to some sort of scientific process. And not go way too far off. But yet I do think it's, I love the fact, you'd armed yourself with the knowledge and didn't wait for someone to give you the answer. So I think that's And I think that we, I would recommend that anybody who's especially dealing with chronic pain is like you need to study and get your stuff in line and not sit there on the sidelines because if you sit on the sidelines, healthcare ain't going to scoop you off, like you're going to have to pull yourself off and fight your way back onto the field of life.

And you're really in quicksand. It's slowly pulling you under, like you're not benignly sitting on a curb. When we stop for the, for life altering medical conditions that don't have solutions, right? Which is so many of our autoimmune conditions, long COVID included and chronic pain you're not benignly sitting on a curb. You're losing your life because you keep making it smaller and smaller. Until you decide that you're done losing your life. They're like, That is the readiness point when the individual is has lost enough that they're done. And I don't know that you can expedite that. I

always a question. I think I've asked you it. I've asked a lot of my lived experience or friends that, is there something. you think could have happened earlier on in your journey to have made you be ready earlier? Or did you need to get to that worth? You've lost enough to where it was time to change. What do you think of that?

mean I think we're all individuals and we all have our own value system and the way that we take in information and for. Stubborn gets like me. I just had to get to the end of the road where I was like I've tried. When you hear somebody say I've tried everything, they're close.

And that's some of the exercise we use with like act based things, creative hopelessness, where you let people walk themselves through their story to you've tried it all. Life still continues to get smaller. Do you think a different approach might be helpful and hopefully, but yeah, some people come to it on their own, like you did and others where, you know, I'm just done with, shrinking life and nobody helping me in my integrity, being challenged at every turn.

You asked what PME feels like post exertional malaise. So anybody listening, if you've ever had mono. Feels an awful lot like that. If you haven't had mono, imagine not sleeping for three days, and then being told you need to go run a marathon, and then that you have to keep going to work. It is, it's not tired. It's beyond tired. It's, it is a beyond beyond tired. And one of the Analogies that I have used to describe the physical feeling is it often felt like my spine was filled with cement and I was just like glued to the surface that I was on be that my couch downstairs or my bed in my bedroom, but it was like the idea of. The idea of having the actual physical ATP to move my body was, I didn't have enough, like there, there was nothing that was going, it wasn't that my brain didn't want to get up. It wasn't that I didn't know movement is good for our bodies. It was this body isn't moving and it would usually come after a highly emotional experience. Highly stressful or I, the walking that I undertook trying to get myself better. And I eventually reached out to our dear friend, Sandy Hilton and was like, okay, I saw you mentioned something about heart rate pacing. What that tell me about that. And so she helped me get a handle on what heart rate pacing is and how I could use it and how part of the problem was energy production. Transcribed When it comes to post exertional malaise. So no, I'm not lazy. No, I haven't given up. It's I literally don't have the basic building blocks to continue to move, which is why it's bad to try to exercise your way out of post exertional malaise. You can't, you make it worse.

So you mentioned heart rate pacing. Can you Discuss obviously we know exercise is shoving exercise down somebody's throat with post exertion, not a good idea, but like it now, if you could prescribe you've already had some good interaction. Sandy, we're trying to get her on the podcast. She's busy, but we're going to get her, bother her enough until she finally, Submits to my request. That's it. That's it. But what would you say if a clinician seeing it, they're uncertain, like what are, what'd you say would be a good approach to take on

So I think the first thing, like the first thing is you've got to identify it, right? You've given the like supine, say it's a back patient, right? You've given the supine four way leg exercises, right? And heel slides. And they come in and they're like, I couldn't I was fine when I did them, but then a day or two later, I couldn't move. I was so tired. That should be making all kinds of flags fly around in your head. And you should be thinking that's weird. Because you're right. That is weird. Because we give those to geriatrics in hospital beds. So why is the 30 something in front of me struggling with this? But you'll note, the first thing you did was you believed them. Because that's what made the flags go around in your head. And then you poke around for some more information. Are they showering and then do they need to rest? If it's a woman, can they shower, shave, and wash their hair all in the same shower? Or are they breaking it up? Because a lot of times people will break these things down without realizing they're doing it. And then we ask questions like are you able to shower? Sure, but if you don't ask me the next questions, you're not gonna get the answer. You're not gonna get the information you need. Yeah, I can shower. I also need to sleep for three hours afterward because my heart rate goes up to 140, right? Can you do the dishes? If I sit in a chair, and I've worked my way out of a lot of this, but the heart rate pacing is to take your heart rate. We don't want to go above 40 percent of your max heart rate for Really anything. So the first thing I had to do was I had to be able to walk down my stairs and keep my heart rate under that 40%. And if it started to pop up, I had to sit on the stairs and wait. So there was a while that it was taking me close to 20 minutes to walk down my stairs while keeping my heart rate In the okay zone, Mark, that's not fun and it takes discipline on the part of the patient, but you know what, the more I did that, the less tired I was. So the more I got done, which meant I kept pot. We call them ping pong balls in restoring Venus, but the more positive ping pong balls, the more I wanted to do it because the more energy I had for other stuff I had to learn. I there's pacing, and then there's extreme pacing, and I feel like it's an extreme sport now that I can break down any task into the most infinitesimal points. Right? And I learned to do that. So like Christmas decorating that first year took me three weeks where normally it would take me a single day. Baking Christmas cookies, instead of being a single day activity, collect the ingredients, then wait several days, then make the dough. Then wait several days, then cut the dough out, wait a few more days, then decorate the cookies with the family. Yay! There's the, you finally get there. But you gotta plan this stuff so that you're not constantly draining your literal battery. And pushing through it is just gonna land you in bed every single time. I tested that theory roughly 4, 000 times and you know what? I was never able to push through because it's a mitochondrial issue.

Do you feel there's any inroads to that experience through some of the stuff we all use for Mindfulness and things to where you can harness maybe some of your autonomic systems input into that situation through how did your experience with that go?

So Jim Stark and I did some experiments with an Apple Watch, the Visible program, and then just my own interoception. And turns out I have highly honed interoception at this point, and that was a lot better than any of the watches. But if your client has no clue what it feels like when their heart rate raises or when they're starting to peter out or their energy level is getting low or like any like brain fog, so we haven't talked about this. Yes, the worst symptom for me was that I would go to do the things that I did during chronic pain, which was learn something, right? So I'm going to learn about post exertional malaise. I'm going to learn about long COVID. I couldn't read. I couldn't stay on the computer. I couldn't have screen time because it was drained. I didn't yet understand that all of these tasks are still draining my energy, even though they're not exercise. So for me, the hardest part was I couldn't read studies to get information. Which meant I had to ask for help. I knew a couple people that really wanted to help me, and were very good at that, and so I tasked them with reading the research studies and sending me snippets. And that went on for probably nine months that Carol was reading research studies for me, and she was just, she was a former patient of mine. She was a former client of my coaching services, had gotten better, wanted to be able to pay me back, and I was like, great, you are a crazy research queen, find the not crazy stuff for me, right? And she did that, and I think chronic illness and chronic pain were terrible at asking for help because we either feel like we've asked too much or that there's just this fatigue, right? We imagine that everybody around us is fatigued and they're tired of hearing about our shit. Maybe, but if we don't learn who the safe people are to ask for help, you, again, you're limited. You, we have to learn to ask for help to get through the things we need to get through to get to a point like, I'm at now where I'm back at work twice a week. I'm only it's only 4 hours. So I've got 8 hours that I. Am in clinic, and I need to really take care of myself when I'm done. But the visible app is good for those that like can't tell you anything, it just happens, right? I don't know. It just happens. The visible app is really good for that and it doesn't push you like the health watches that are like, you should get up and walk. You should, you've been awfully passive. And that's counter in that's counter helpful. It's counterproductive.

I've been going deep down the act rabbit hole for the last, gosh, two years or so. And I think about these and I'd love, cause obviously your firsthand experience of this thing, part of it is like being able to handle difficult sensations, right? And your body's going to be sending you a lot of difficult sensations with us. So I'm wondering, do you feel like there was a bit of being able to accept? Those difficult sensations where you had to find a way when they showed up to modulate your response to them. They talk about what difficult thoughts show up for some of our chronic pain patients. We need to teach them diffusion skills so they don't. Tussle with them and ramp up everything because they're understandably dealing with some difficult things. I'm wondering what your experience with that type of thought was as far as like when these difficult sensations and things showed up, did you feel like you had to practice some skills to be able to not let your body ramp up with them or react to them? Or

Yes, so I think the 1st thing to note is I have not had pain with this. That would be the thing that would freak me out the most. Because I have lived no more. I want none of that. Right but I have not had musculoskeletal pain. With any of this now, the heart rate that would jump up first thing in the morning before I even got out of bed was very deflating to me because it felt like I wasn't making any progress and then I could hear myself start that catastrophizing the ruminating. Like I did it all at once. And I was like, this is not helpful. This is, I don't know who I'm talking to in my own head, but I'm like, this is not helpful. You need to get yourself out of this. So my comfort is fact. So I Googled higher heart rate when you first wake up. Oh it turns out we all drop cortisol first thing in the morning to be able to wake up. So everybody's heart rate is higher in the morning. fact alone made my heart rate drop, and I did not have those spikes again.

To me, that's a great example of it's just the safety, right? That this experience, when it, the uncomfortable experience and sensation wasn't.

It's totally normal.

it was your heart rate doing some wonky things. And when it enters a central nervous system that now conceives that, okay, this has made, it now makes sense to me why This is happening. I don't have to, the unknown and uncertainty and understandable, especially when it goes around the heart, I've worked with enough people with chronic chest and, difficult with exert, because of a lot of the anxiety that come whenever you. monkey, anything around the heart comes into play. That's a, mortality threatening thing for people. So understandably, it's hard to have those sensations and be able to modulate your response to those. But I think, like you said, getting good information to know that there's some normalcy of what your experience is versus what's going on in the uncertainty. So that's a great example.

I think the other thing that fits that was as I was trying to make sure that what I was feeling in my body matched some kind of trackable data. Much like charting your pain and, the pain diaries that some keep. It's a double edged sword because you've got some people that can Intellectualize it and they can see patterns and then that's fine. And then there's the other side where no, that's really terrible because now they're just hyper fixated on everything. And I felt myself weaving in and out of that through my experience. And so because I was able to identify what was happening, I just, I would take the watch off. I need a break. But again And Jim said this when we were working together, and I was trying to give him feedback on the visible. He said, but Amy, I don't think you're the typical you're a typical, right? That you're aware that this is. The response that you're having that's where you need a clinician to come in. And again, you got to ask the questions you got to monitor, how does it feel to track these symptoms? Is it good? Is it bad? Is it giving you anxiety? Do you even know what anxiety feels like around this? We have to hone our questions if we're going to help the person in front of us.

100 percent and especially with some of the wearables. I think definitely a place and can be very valuable for the right person in the right context, and maybe with the right. Preparation for the person too, that it, this shouldn't be something where you're staring at your watch and your app 24 seven in pure terror of what might show up on that app and things. Cause that, if anything makes the situation worse, can you use it as a valuable source of data to help inform your approach to budgeting, your energy budgeting, some of the things you mentioned as far as making sure you're keeping that heart rate pacing. Yeah. I think that can be

And what to expect afterward, right? I have days at work when I've got, when I've got a caseload full of patients I know, I already know what I'm going to do. I don't have to think about it. Really hard in the moment because the squirrel doesn't run as fast as it used to. My heart rate stays very low. On those days when I've got a bunch of new patients that are, I first visit after eval and I'm like, scrolling back through the eval really quick, trying to figure out what's going on. My heart rate gets higher. I know the higher my heart rate is and the longer it's higher for I need to build in more rest. I don't see it as a bad thing anymore, but having the data after, at the end of my shift, I can go, okay, and here's how I have to adjust later tonight and tomorrow.

you bring up a good thing. Cause I think this is something I've had to do with my own practices when there's that. When you get in a groove with somebody and and it's just smooth and you've got to know them well, there's good rapport and you got, you're really problem solving. It's a really interactive thing. The alliance is there. It's great. And I don't want to say it's. It's effortless, but it's a lot less effortful.

it's a lot less mental effort.

Exactly, and I think the skill too as a clinician is to be able, in those uncertain situations, second visit or first visit for, maybe it's your first eval as a PT, to be able to manage those uncomfortable, one, things that are coming your way from the patient, because they're often, people have gone through some pretty terrible things, which, so understandably, there's, Emotions that enter the room, but also when you're hearing things that don't make sense from a traditional standpoint, it's just trying to be able to navigate that and say, it's okay. I don't know this. I'm, I, almost as clinicians and we're going to actually run a, an act for clinicians, a little mini course here for, so folks can learn to unhook from some of these on and be productive in this, in the face of this uncertainty, instead of. Okay. Either running from it or, pushing it back on patients, that

get curious.

yeah, a hundred percent,

Get curious.

and just, embrace it too. I love the fact that I don't know what the heck it's going to go, how those sessions are going to go. I'm going to do my best. And I even. I now love the most emotion laden, even cranky, grumpy folks, because I'm like, what is behind that? I want to know. I

I want to know, right? I want to

And I want to see if I can, I want to see if I can get on the right side of that and see if I can see if I move it in a different direction. No, I don't always succeed, of course, but I think, the ability to. Be able to manage those difficult sensations instead of what, I've done in the past when I was early in my career, you go in the back room with the office, with your clinicians, did you see that person they're faking or blah, blah, blah. When you just didn't have the ability to process that stuff and you would just, put it all back on the patient. Cause of course it was too threatening to my precious ego earlier in my career to, Dare think I wasn't capable or competent.

trajectories since we met, we've both gotten intensely curious. Yeah. I don't know anything. I I remember taking your beta class and being like, I'm hoping for not a flowchart but I called it a spider web. I am hoping for a webbing that I can put these ideas into. I, no, that's not, no, it doesn't work that way. There's all of these skills that we garner that aren't medical, they're people oriented. And then we learn to ebb and flow with the person in front of us. And some days we're going to hit home runs and other days we are going to suck to the incapable telling of it. And both of those things are fine because I'm going to learn from both of them.

Exactly. Being willing to embrace the suck and just know that, Hey it's part of the natural course of interacting with humans. It's going to happen. You're going to

to happen and that's, I, that's really the way that I have approached having long COVID. To those listening I had a former employer call and say, hey, I would love to have you back if you're willing to come. And I was like, hey, maybe let's talk because I'm not the same person as I was when I last treated here. And I don't mean all the cool stuff that I've learned. My body's not really, Cooperating and as we talked, it turned out that they also had been experiencing symptoms of long COVID and brain fog and things. And it also are not in the office 5 days a week like they used to be. So they were more than willing to work with me. And I said, okay let's just make a very low, like a very low ramp. That almost looks like a flat line. And I will give you what I can like my commitment to her was, I will give you what I can, but I don't know when we're going to be able to ramp that up. If at any point that becomes not okay with you because you need more clinician hours. Okay tell me to hit the road but I love being in clinic and I want to help. I want her clinic to succeed because I like the fact that she takes care of patients. Like she cares about the person. And it's, it's privately owned and all that, but the fact that I've got a. Clinician that gets it and is willing to work with me made it a lot easier to say, yes, I'm willing to give this a go. Then,

And what an impressive journey from a year on a couch and a bed, which I've worked with my share of folks who've navigated a very, challenging to, work in part time and getting back you budgeted your trip to Disney world, like you said, we talked about that you were able to you're still living life and it's definitely different. It's not met without challenges, but you're a great example of somebody who's. Practicing what you preach, right? You're somebody who's, and it.

keeping like relationships that are challenging. I have had to dial back, delete limit because it's one of the things that I have learned through this whole experience is that there's things that interrupt our nervous system that we don't even realize. I recently took my almost 90 year old dad on a cruise and anybody like, go listen to the first story and things will make a lot more sense about the SI journey, but we, he's silent gen, but we've got a boomer gen X relationship, right? It is what it is. I love my dad to pieces, but he's not the safest feeling person, especially when it comes to my health and my emotions. I'm not allowed to be ill and I'm not allowed to ever be sad. Being in a cabin with him for two weeks, while Experiencing long COVID flare ups was curious, and I noted within the first couple days that my heart, my resting heart rate literally went up 20 beats a minute, just being in proximity to him, no difficult conversations, nothing happening, just being in his presence. And I was like damn, ain't that curious.

I honestly, I love my mom to death. So mom, if you're listening, cause mom's one of my best listeners. I'm sure she listens. She watches on YouTube. She likes my posts whenever I throw them on social media.

Thank you, mom

I guarantee you that my heart rate would probably, if I had some metrics on the old ticker when my mom, cause again, love her to death, but she still likes to mom. Mom's never stopped momming. Even, she's 81 years old. And she hangs out and then, a couple of days in she's mom and me pretty heavy at times and it gets a little, stressful.

a thing. It's a thing. And I'm trying to navigate because we got dad in the wheelchair, and then I'm running behind him with both suitcases going, I should not be doing this. Why am I doing this? Why didn't I just I. That trip through the airport, I just cast off everything I know about taking care of myself, about being safe, about standing up for myself, about setting boundaries. I just threw them all away and was 18 year old Amy again. So I'm like trucking behind him through O'Hare airport, huffing and puffing. My face is bright red. I don't even want, I don't even want to know what my heart rate was. I think it was up in the one sixties for an hour and a half. That's not good. It's not good. That is going to lead to a crash, which After I looked at the data, I was like, Oh, I'm going to crash tomorrow, day one on board. And then my dad's going to have questions. And so I'm like, keep it as dark turn, and he's got the TV turned up, so that four cabins down can hear it. And I'm like, we can't do this. And so I got real, which was also not safe telling him what's going on, because I've You know, you pick and choose your battles with all of our relationships and this was explaining to him how bad things were just wasn't on the list of things that made sense to do, but now he's face to face with it and it's what's wrong with you? And I was like remember how we had long COVID? This is just what it looks like.

great examples, clinicians of how you need to know what relationships are around the people that you're seeing that there might be some relationships that might be having an undue, not that we don't love our parents but that might be impacting the pain levels. And I think it's helpful for people. To explore that with a patient, right? To see if there's some situations or dynamics around a relationship that might contribute to how their body behaves and how, different things. So it's because it's definitely real stuff. Like you said your metrics were definitely a

my metrics matched what I was feeling, but and we don't have to be psychologists to do that.

No.

I remember I, when I was seeing my physical therapist for the SI stuff, he would note that. He he could literally tell because of the tenseness of my tissues when I had spoken to my mother on the drive to the clinic.

And there's, again, maybe wiggling the SI wasn't necessary, but yeah, I think there is a skill of being able to read with, physical touch and things when somebody Yes, there is. And people get all freaked out. Oh my God, this is like pseudoscience and all this stuff, which there's a human connection that we have that when you get to know somebody enough that you can read and understand something ain't right. There's something different.

I will go even more scientific than that. And I will say, if you were making progress on soft tissue work and they're starting to feel like a normal doughy human, and they come in and things are taught again, there's a reason for that. The body is guarding. Now, maybe you think it's guarding that anteriorly translated femur, or it's just guarding from the conversation they had with their mom in the car.

Yeah. Yeah. But just more importance to have. Yeah. to know what's going on in somebody's context beyond what's going on in their body, for sure. I totally agree. You and I could talk about this for another three hours and

Nobody wants to listen to that, Mark.

I know. That's why I want one, because we have some patients that listen to this or clinicians. If you have a patient who is needs like some support as they're navigating the world from persistent pain or chronic pain issues and needs like someone to coach and guide. If you've listened to these two episodes with Amy, you can see she's got obviously the experience and the resume to be able to do this because she's been through it and she's seen it from both sides of the equation. And, so can't recommend her enough to get your patients in touch with her so you, she can help them because Patients need folks to guide them and coach them outside of just a traditional physiotherapy or chiropractic or whatever practice it may be. If you're a patient who's struggling and would like some guidance and coaching to start getting your life back, definitely we'll link Amy's stuff in the show notes. Definitely give her a, a message or email. Can't recommend her enough. So where can folks find you online there, Amy?

I'm gonna I started something new since the last time you and I talked, and I have made a bunch of courses, and a number of them are free. If you are in clinic, and you're like, I have tried explaining the whole pain sciency, your emotions have chemical signatures, and I'm just not getting buy in, use me. It's a free course. It's on education. restoringvenus. com. Click the courses and it's chronic pain explained. It's completely free. It's four hours of education. Basically, in patient ease. Heck, you can sign up for it, watch it, and make sure you want to use it with patients. But it, I've basically rewritten Greg Lehman. Adrian Lau and Lorimer Mosley and David Butler, and then some other random stuff that I have pulled because I pull from everybody. But it's from a patient to a patient in the way that it's explained. So that is something that is at your disposal. And I also have one on like boom busting and why that's such a bad idea. And like how everybody tells us to pace, but nobody tells us what pacing is. Right? And then I do have some paid material that again breaks things down. There's one on pacing. There's one on bridging the gap between we've gotten discharged from PT, but we're not ready to go back to that 60 minute class at our favorite gym. And then there's one on like, how to manage your emotions, which, which really dives deep into. The chemical signatures, and how these relationships and these different things that we don't think about that connect to our pain can really influence it and gives patients practical ways to get through that.

Awesome stuff. I think huge resources, definitely check them out if you're listening and definitely you should get those so you can push them to patients because again, there is something to be said about the credibility of somebody who's been in the shoes of a patient helping them versus. Clinicians who, I have my chronic back pain stories and stuff that I can share with some people, but there's definitely, something to it when you have a patient or a some, a teacher who's been through it and the patient can see them having walked in the shoes that they're currently walking in. Amy wanted to thank you again, as always, for your time. I love the conversation. We'll continue to catch up. And thanks for all you're doing.

oh, thank you so much, Mark, and I am happy to come back anytime.

Love it. Love it. So all you listening, make sure you subscribe. And if you have somebody who's dealing with. Some long COVID challenges or dealing with post exertion and malaise and related things around that. Don't hesitate to share this episode with them. That can be a helpful thing for them. And also if you can share it with a colleague that might need this as well, that would help and it would help us get the message out to more people, both clinical clinicians and patients, so they can better help some folks. So we'll leave it there this week. We'll talk to y'all next week.

This has been another episode of the Modern Pain Podcast with Dr. Mark Cargilla. Join us next time as we continue our journey to help change the story around pain. For more information on the show, visit modernpaincare. com. This podcast is for educational and informational purposes only, and is not a substitute for medical advice or treatment. Please consult a licensed professional for your specific medical needs. Changing the story around pain. This is the Modern Pain Podcast.