Episode 36: Breaking Down the Complexities of CRPS w Justine Feitelson

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Don't forget you can use the code Cardiopalm1MO at the time of sign up for a one-month grace period applied to your new account . Thanks again , jane . Welcome to Talking All Things Cardiopulm . I am your host , Dr . Rachele Burriesci , physical therapist and board-certified cardiopulmonary clinical specialist .

This podcast is designed to discuss heart-lung conditions , treatment interventions , research , current trends , expert opinions and patient experiences . The goal is to learn , inspire and bring cardiopulm to the forefront of conversation . Thanks for joining me today and let's get after it . Hello , hello and welcome to today's episode of Talking All Things Cardiopulm .

I am your host , Dr . Rachele Marisi . So today is October 31st and I wanted to end dysautonomia month by bringing in a colleague and friend , justine Fietelson , from Resilient Warrior Coaching , to talk about her story , her journey with CRPS and how she turned that into positivity , and now she's helping other people with CRPS through their journey .

So , without further ado , let's get after it . Welcome , justine . It is a pleasure to have you here . Before we kind of jump in and talk about what we're going to talk about . We've just been chatting for about 30 minutes , so we're trying to get ourselves back in the groove of back to serious . Let's get back to the program here .

So I brought Justine in because it is this autonomia month and last week , yeah right .

And so , justine , I want you to kind of introduce yourself , because you have a very different background and your business of itself is different and you work with a very specific population and all sort of ties itself together . So give me a little bit about you , justine . All right , I'm going to do my best .

But it's short for complex regional pain syndrome , which is a poorly understood , hard to treat , very rare disease . Most medical professionals don't even know what it is . It makes it very hard to get diagnosed , to get treatment fast enough . The later you get treatment , the more it impacts your outcomes , unfortunately .

And once you have it for over a year , that's kind of the line where it is considered chronic and at that point very difficult to get to sort of go away and reach no symptoms or what would be like a true remission . You know the way you were before disease onset . It's kind of neurological , it's kind of inflammatory , it's kind of autoimmune .

The reason it's painful is because you get this inflammatory stress response to the part of your body that's affected , whether it's an arm or a leg , and over time it can spread to multiple limbs , internal organs , affect other systems and it's just mislabeled as a chronic pain condition .

We just don't know exactly the mechanisms of it , but it's just that it's very painful , the symptoms , but it's much more than you know , some chronic pain syndrome . So I was diagnosed with that in 2019 .

After living with a brain injury for the nine years prior and a lot of people who developed this disease , they have some sort of like previous inflammatory state Lyme right , even like things like lupus or other autoimmune things previously .

There's these interesting commonalities as far as the inputs or people's genetic predispositions , and then you layer that in with trauma and other things that happen in life and then there's like this straw that breaks the camel's back and if you have all the right stuff before and then kind of all the right amplifiers and other things happen after , it can really

explode into an unmanageable situation , which is what happened to me .

I was like the perfect host for this disease to develop , unfortunately , and I , because of how I approached the TBI before , where I was on over like a hundred medications , electroconvulsive therapy I tried to search externally for , you know , a number of things that would fix the way I felt , whether it was the cognitive defects , right , the emotional ramifications of

losing you know everything you thought your life was going to be and who you were , so I was very depressed . That amplifies a lot of those symptoms too . You get isolated . All the side effects become as intense as what you're trying to treat with them . In a lot of cases I also had cluster headaches .

So I worked my way all the way up to fentanyl , which is not an effective way to treat that , but they were medically intractable . I worked my way through every other option and so I learned , unfortunately , from doing everything basically wrong before not wrong , but like it was the best I could do .

Right , but it was not an effective way to treat what I was going through and I just outsourced it all , but you were also being managed by a team , right .

I cannot make the same mistake you know , for lack of a better word when I approach this situation , which is very similar , sort of incurable Don't know if you're going to get better , but we have way more power than we think we do with chronic pain and with the things that influence these things taking a hold of our lives .

And so I didn't want to go down the same path of searching for medication , medication , treatment , treatment , injection , surgery , and that's what I saw a lot of CRPS patients doing , just for a different reason than I had with the TBI .

So I put everything I had into first for myself , trying to survive and figure out how in the world do I desensitize and change the way my nervous system is responding and has learned to respond to any stimulus , like wind , breeze , weight-bearing , stress , lack of hydration , like sound . You know CRPS is affected .

You're basically , you get sensitized and your nervous system , just over , responds to everything , which then you avoid more and more . Right , it reinforces the pain response . You limb guard .

I tried to learn how to do everything on one leg and then realized this is not like an effective long-term strategy for 60 years , because you atrophy , you develop awful compensations as a PT you can imagine Totally .

one part of a surprise . Yeah , the second part I want you to kind of talk about princess . Yeah , I don't think anyone . You know you're talking about dealing with one limb , but we haven't actually talked about , like , how did the one limb become the limb ?

I had to like hobble home one time and then it just got worse and worse . I started to swell , started to bruise . It was like something with my ankle Like I did an osteocondrial defect . They thought I tore my Achilles Like I went to a bunch of different you know specialties cause .

I also had bone loss in the leg , which was very peculiar for someone who at the time was 30 , right , and then finally they found a tibia fracture . So then I was immobilizing a boot for three months , which is like the worst thing you can do if you have CRPS . They just didn't know I had that , so they didn't know better .

But when you sort of reinforce this disassociation that your brain is starting to develop with that part of your body , it just blows it into overdrive . So then it started to feel like my limb was getting electrical , like shocks . I was explaining this and they were looking at me like I'm crazy .

It felt like Tonya Harding just shanked my ankle Like I would have bet my life that . Yes . You had an , but you have like a yeah , and it's not like there's no swelling , but there's nothing visible on scans . There's no , you know so .

A bone scan so , because I had not just bone loss as far as on an X-ray , but bone remodeling starts to change as the disease progresses , and so what's weird is that I already had that like eight months in , and so I think that there may have been some other trigger that was even less obvious than a hairline tibia fracture .

That set this off to your point a little earlier than tibia fracture was the trigger , because if it truly was , I shouldn't have had bone loss yet already I was going through , you know , trying to get this diagnosed .

Right , something's not right here , yeah . And then the muscles right . You get all this , these bizarre sort of neuropathic also ish , symptoms of pulling , you know tearing . You get a lot of the atrophy spasms , spasticity develops . You get a lot of those sort of .

You see people with the hands that get curled , the feet get curled , and then , from a bone perspective , you get the remodeling as well over time , and not everyone develops every symptom . So not everyone will eventually develop bone remodeling Right , but the longer you live with it right , the more of these effects take place typically .

Actually recently had a older gentleman with CRPS and I actually texted Justina . I'm like , hey , is there an acronym or an abbrevi when we call this CRIPS ? And she's like she was like I did for a while . I was like I just want to confirm , Is this like a known name ?

I was like I think this is CRPS but it was nowhere in this guy's chart , yeah , and so what I was going in to see him for had nothing to do with his limb Actually , it was left limb and he was in so much pain he wanted to go palliative care and it was just this awful situation that I walked into and wasn't ready to walk into cause I wasn't well

documented , yeah .

How long did it take to get a name to that diagnosis ? How many misdiagnoses did you get ? Like , go into that a little bit it took .

So like , imagine the pain of getting like something lopped off constantly with no end in sight and there's no explanation for what is happening to you . And so , yeah , like I said , I made my different pit stops from endocrinologist , including endocrinologists I can't even remember all the ones along the lines , but , right , a

PCP missed it . There were so many people that if they just knew these classic symptoms which the patient is verbalizing to you and this is also where it'd be really helpful to have identifiers like how complex of the patient is this ?

What were they walking in my door with that then if you couple that with what they're trying to tell , you would put the picture together faster than that being on the patient , cause it often is .

And then it's made , you're made to believe that it's in your head , which is another huge issue , because it's not just because stress and emotions and perspective amplify pain . It does not mean that the source of your pain is in your head or symptoms , and if practitioners cannot find them , that you're making them up in a sense , right .

You know like , how did you then get to the next piece ? Yeah , Cause I can imagine eight months of that , Like there's that point of you have to have that point of like . I've got no answers . How do I keep like , how do I keep going , how do I keep getting after this thing ?

Until then I was trying to survive keeping my foot off the ground like literally 24 seven . I couldn't do anything . Bare weight touch , yeah . So you're in full , like wearing compression .

You know I would , when I would try finally to train , or I would then compression gives some almost like protection when you're increasing the challenge , but then it's very aggravating too at the same time . So that too is a balance .

But basically it was once I was finally diagnosed that I could free myself up from a non-medical end of the spectrum perspective of everything other than okay , what can they do , interventions , medications , surgeries like we talked about , and what can I do ?

And so once I was diagnosed , that's when we started sympathetic lumbar injections , which kind of like just epidurals , right , trying to block some of that pain that's traveling up and down spinal cord from , in my case , leg , leg , leg screaming I'm injured , brain's going , I got you sending help , but the leg is not injured .

So it's kind of like a quarterback throwing a football , calling the same play over and over and over again , even though there's no receiver there to catch the ball . Yes , so it's the communication that's gone awry and your nervous system gets stuck in a fight or flight .

Red alarm send help for injury cycle endlessly , and so that's what that's trying to dampen Again . I didn't want to go the route of a million medications with side effects that will affect my like everything that I just went through .

I didn't want to redo this Ulta , lyrica , right , or kind of first line nerve pain medications other than Gabapentin , which was more benign and worked a little bit for me so that helped lower the external stim , like that intensity , just skin wise enough where I can tolerate sweating . So that's where the compression comes in .

Is it's like how do you make that part of your body less distracting so that you can even concentrate on anything else , let alone ?

And so I started with Gabbenton layered in the injections , right , my doctor was a pain interventionalist , so I had access to some of these treatments that other people don't even have access to . Some people are interested by this for a primary care or a physician's assistant . No offense , right , that's just it's . You can't . Then .

Awful with that experience , right , great next no big deal right . Get that information and you keep it moving . So it's important to be open-minded to things . But also , you don't need to suffered with side effects to the point that it negatively affects your ability to manage pain more than if you weren't on the medication or at a low dose .

As far as appetite , mood , If those things are way off the filter , you can't , you don't have a chance .

specifically , but increased risk of complications , the leads migrating , the wire breaking , right , it's not as thick Got it , so that's how I've treated it , and other forms of treatment are commonly things like ketamine infusions , which are not known by most people , not covered by insurance . Right , makes it really hard access wise again , but that's pretty much it .

Low dose naltrexone can be effective , right , there's other things , but you need someone who understands CRPS to be able to even give you the try . Yeah , right .

You're never getting to come off of static , yeah , right , like you're just on the gas all the time , right , right , right . Yes , you also had some sort of dysautonomic symptoms . Yeah , at some point . When did that come on ? What were they like ? Let's get there .

You know , and I don't know what I'm saying . You know , and I don't even have spread , so to speak , to other organs . Right , because once it affects , it can affect your bladder , it can affect your GI system , it affects a lot of other things over time If you don't manage stress .

Also right , because that's where the CRPS and dysautonomia , the nervous system tie in , is kind of unique in that way , or it's more , it's a bigger deal than in other contexts . Right , so I would blame it earlier on . On just CRPS , it's when I get more rundown , right , I work too much , it gets too hot , I can't manage my body temperature .

Well , not super nauseous , queasy , right dizzy , more fatigued , but there were other things to blame this on my actions . And then , predominantly right , crps it feels like you're having an anxiety attack , like but you're not from a heart rate perspective to at times .

So for now it's HEDS , right , or we'll just call it hypermobility spectrum disorder until I know for sure .

But it doesn't really matter , it's the same outside of what is does matter in the sense of , with HEDS , if you increase your protein , it helps a ton because collagen breakdown is what's driving it and it's not genetic , right , so it's like , right , exposing factors , then your behavior , then compounding over time , right , so the intervention is more effective for

HEDS . But the symptoms are pretty similar , right , and that sort of higher heart rate when standing versus sitting . It's really similar to the POTS , right , positional changes , and it may even be that , right , pots is a type of dysautonomia . So how specific .

And there's a bunch of different types of dysautonomia , right , dysautonomia is kind of a vague , general catch-all bucket term , but it works because unfortunately , getting it diagnosed more specifically can be difficult , right , like you experienced it . So at least if you articulate what you're feeling and experiencing , that helps .

But yeah , for me it was early on sort of getting when I would get run down . It's extreme , I can't manage my body temperature . I would get extreme periods where I would shiver so much . It was like rigors , like I would be in bed and it was like a I can't even .

It's like your teeth are chattering and you're just like waiting for it to go away because I wouldn't even be able to call for help , like I'm okay , it's just , and then it passes and like what is that Right ? So it's hard to pin down because it's a bunch of different shit , absolutely .

But once I had the sort of hypermobility piece clear , that's when I was like you know what ? I think ? What I've been blaming on CRPS is more dysautonomia from BDS , right , hes .

And once I had my diagnosis , I kind of let everyone like the people tell me what to do .

But now that I'm diving in and now that COVID happened and POTS is actually like coming to the forefront of conversation , like it wasn't right , like even still to this day , when I go to a PCP like I've moved a few times and I started an APCP I'm like I have POTS .

They're like excuse me , and I'm like I'm going to work with the Static Tachycardia syndrome , right . So it's still not a prevalent , well-known , well-understood .

The etiology isn't like all of the things , right , but as I'm diving in words like chronic fatigue syndrome , post-exertional malaise , eds , heds , hypermobility , eds , fibromyalgia Size , intolerance is such a right Like now we're starting to cluster together , and so one article I read which was actually interesting is blaming it on each other .

Right , like you had CRPS , and so you blamed it on CRPS , but like maybe you actually had POTS or maybe you actually had EDS , or you have EDS , but we're just going to call it POTS because it kind of makes sense and like it'll work itself out , and so we're just going to name it that .

So it's kind of like , I think , like fibromyalgia and CRPS , where it's kind of like we see these symptoms and we're trying to rule things out and so we just it's a disease of exclusion from a diagnosis perspective often right .

beneficial .

So you work with these patients every day , justine , and I know exercise is a big piece of what you teach , promote and all of that . So give me the why . Why are we exercising ?

There's just not anything the medical system is going to really offer as far as treatments that are in pill form . Right , but there's a ton you can do once you know what you're dealing with and you know what . What is this a piece of my puzzle , right ? Is this a contributing factor for the other thing I'm dealing with ?

And if you don't know it , then you can't tease out what's from what . So , even if there isn't a medical treatment for something right now , it's still important to know if you have it or not and to label it correctly so you can communicate about it correctly .

You know , because there are going to be some things available , right , you're going to want some tests that you can't get access to if you don't have a diagnosis officially , and ideally , you find providers who have more awareness of the issues you deal with once you have more awareness too .

So movement is one of the biggest pieces of regulating your nervous system , changing the way it's overreacting , responding to stimulus , being stuck in that sympathetic state . How do you get out of it ? You have to sort of train to . You have to kind of flirt with that line of oh my god , way too much , you know horrible flair , never want to do that again .

Cool , agree , I'm not trying to torture people either , but that's what I was like . Am I going to be able to convince anyone to do what I have done to manage this ? Because doctors , once you're diagnosed , will be like you have to use the limb as much as possible and it's like how , how , how you try , are you insane ? But that is what you have to do .

And just bridging that gap is tricky , and so I use a lot of things around like release techniques and breathing and sort of really what a PT should also be doing with someone beyond corrective exercise . In this state . It just doesn't happen as often as it should and there's a lack of understanding around the sort of neuromuscular inhibition piece .

Speaking of being sedentary , often your brain adapts , it finds other ways to complete movement patterns , and so then you go to move more in regular life . Now you've developed a bunch of length , tension , relationship issues , and it's not as simple as do more clam shells , because the part that's supposed to be kicking in when you do clam shells isn't so .

Doing more clam shells isn't fixing the problem and so many CRPS patients fail PT and it's so upsetting to me because it's the most important thing is just not being delivered and communicated correctly in that patient population .

Pots is such a problem with kind of educating your person to exercise because you feel like trash Like , you feel like absolute garbage , you cannot be upright , you're going to pass out . You're like I'm going to pass out .

With dysautonomia , the issue is that you cannot go back and forth between sympathetic and parasympathetic appropriately , so you're like you're like course correcting and overcorrecting in between the two , which is very fatiguing , will mess you up , and that's adding to , then , why your body is basically giving you symptoms like nausea , to trying to slow you down .

Right , it's trying to signal SOS , right , because it feels like this , like it's impounding between things . Yeah , that's actually a great explanation Different than pure sympathetic Right .

Like I'm resting real low Like a Dinsen schooling and I'm like I'm not an elite athlete at this point in my life and I should not be resting at 45 .

So you sort of have to tease out with dysautonomia , because it affects so many different symptoms , their systems over time and depending on what type you have , is what is it mainly affecting for you ? And then that's what is it digestion ? Is it heart rate , right ?

And then , if anything that guides like an off label usage of something to help that symptom so that it doesn't snowball , but otherwise it's lifestyle and movement related , right . We talked about digestion . We talked about protein intake Yep , the most important thing if you have the non EDS type . It's just not well understood .

Yet this is stuff that my podcast partner and I , dan , are gonna Dr Dan , are gonna tease out further because it's just it .

There are patterns , you know , and the problem is just when specialists , who are the people who have most of these patients , don't communicate with each other to then pull out these patterns , because when a doctor sees one or two people with a presentation , they can't see the patterns , and then people don't get treated ideally , right .

And then you're missing out on time , right , right , and the person's getting more deconditioned and more helpless and then it's more stressed . And now you've made it way harder for you as a clinician , 100% . So movement is also so important because it's a skill that can be progressed forever , right ?

It's a tool that then you have at your disposal to use whether you're better or worse , and knowing how to adapt it to that is also critical , because you want to create autonomy in people and sort of learn how to manage it when it's dynamic , right 100% , and that puts the person in the driver's seat too right , like having some control over your current state

is very empowering to like this is no longer hopeless .

It's based upon all your previous experience , especially your recent previous experience , whether that is pain , fatigue , nausea . It's so that it's not as simple as you know . Retrain your brain , but it's just making a stab at neuroplasticity and how it is possible , and you have to be intentional about creating situations and scenarios that give you confidence .

Otherwise , you're reinforcing the opposite , which does not help . Right .

Let's talk specific breathing and how breathing can help dysautonomia and how breathing can help patients with CRPS . And I want you to give it to me because you know context ?

reasons . Right , you're trying to trigger more parasympathetic to kind of combat the otherwise either ping-ponging or dominant sympathetic state . So the word hack , biohack , it's like very overused in our rate , like in this .

There's not a lot of other ways to do that , like drugs try to take a stab at that right , but that they don't affect our physiology like that , so it's not actually getting to the root of why we're getting symptoms even .

And so first , being able to breathe more diaphragmatically at rest , automatically by default , requires you to intentionally practice it , not at rest right , like in a drill or an exercise , so you can do that in different positions that are really accessible and you're just trying to feel for right your ribs , rib cage rather expanding laterally , so it should be

hostile breathing rather than empty in your chest , like when you're stressed or you're anxious or you're in pain , and you clench right More forward , you get everything goes kind of anterior . So diastereatic breathing helps posturally , it helps emotionally , it helps if you're at a 10 , keep it from going to a 12 .

It's not going to take you to a five Right , it's not that type of thing , but the more consistently you do it in practice , then it starts to translate to at rest , and then you're communicating calm to your body all the time instead of inadvertently not all the time , and I don't know how many times exactly we breathe a day .

Rachel , I don't know if you have that .

I don't know if I have that stuff , but it's a lot I don't want to pull a number out of my butt , but it's a lot to be doing not incorrectly , because here there's loads of people walking around still alive , not diaphragmatic breathing , yeah , but you're really missing an opportunity to change the way your nervous system is automatically learning to respond to

things . And again , like you just said , take back more control , be more intentional . This requires awareness . You have to notice what is not right to make it better , and a lot of people have no clue that this even matters and it affects a lot of things other than your nervous system .

Either right , like posturally , you can go from sort of a scissor position to more .

So , like , breathing also helps with inflammation , yes , and breathing helps with increasing vagal tone and it helps with digestion and it helps with increasing preload , which is the amount of blood that comes back to your heart .

So when you are someone who's in like dysautonomia or you have POTS right , because , again , there's so many different reasons why you might have it Breathing let's call it a hack is a wonderful , let's call it a tool . It's a wonderful tool to help bring back control and help the systems along .

You can literally watch , and I usually keep them on monitor Right .

So the problem with hypovolemia and this , like you're hitting both . So it's a great tool and it works even better when you make a part of your daily routine , versus just in those moments of episode .

There's going to be periods where you overdo it or it's just not even your fault . It just is the way it's abilities are , so being able to manage that is also crucial .

You know , if you're listening to this and you have CRP , you're like , oh my god , somebody who knows . You can reach me at justine at resilientwarriorcoachingllccom for that one , and otherwise , rachel , you're going to put the rest of the stuff in the show notes .

But to go to sign up , for example , my newsletter , which is a free resource where I share perspective and tips and strategies related to dealing with the things like we're talking about today and getting announcements about upcoming products and services , that's the best thing to go to , I would say .

As far as a single call to action for now and for that , just go to my website , which I already listed . And otherwise , yeah , you can say hi to me through DM as well . Very accessible and I really , really appreciate you having me , rachel .

That's the other , just so you guys have more resources that are non CRPS specific , that's , more chronic pain in general , including CRPS , but a whole bunch of other you know diseases and pathologies that we're trying to create more access and education that is direct to patient around the different treatments available , right , because if you're dependent on your one

physician to give you options , you only have that one physicians and then it's difficult to pick the best one for you . So education is the best way to level the playing field , right , other than literal financial access as far as health insurance issues in our country .

So that's a really great resource If you deal with any sort of chronic pain and is a work in progress that we're creating and becoming better and better with the different things we're putting out . So that's wwwempower you FDN and then the podcast Podcast name . We will be and I is coming soon .

I think we're gonna be releasing episodes , I would say by November , but the name of it is it's Not in your Head because , as Rachel and I talked about , it is not in your head and it drives us both nuts from a gain interventional perspective as well as a do everything else other than that piece of the pie perspective too .

So we're gonna be breaking pain down , pain science down , in a non-offensive way so that you can better understand , right , what do you control ? It's not in your head . It's just not all structural either . Right , it's both .

And helping people build their own pain puzzle so they can take back more autonomy and control over all the pieces they affect , instead of outsourcing something that is too complex to outsource . Essentially right , just like dysautonomia . You got some accountability and then you get better outcomes .