Finding the Right PT for You with Wendy Wagner

Dr. Linda Bluestein: [00:00:00] Welcome back, every bendy body to the bendy bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. I'm really excited to chat with Wendy Wagner today, who is a physical therapist based out of Chicago. I think most of us know by now that physical therapy is such an important component of living your best life with symptomatic joint hypermobility, but finding the right physical therapist could be so challenging and trying to find the path forward without causing flares.

Sometimes it just feels like one more big hurdle to overcome. And I think you're really going to enjoy this conversation I had with Wendy that covers those topics, cervical instability, and so much more. We also know that physical therapy is rarely a linear path. [00:01:00] Oftentimes we can end up with flares and, you know, It's really common for people to have a path that has lots of dips and successes along the way.

So we need to modify our home program and we need to communicate with our physical therapist. And Wendy's going to give us some tips on how to do that. Wendy Wagner is a Chicago based physical therapist who also has the triad EDS, POTS and MCAS. And through her own journey, she discovered treatments for managing pain.

She has also co authored multiple scientific journal articles and is active in the greater international community. I'm really excited about this conversation with Wendy today because although we've talked to multiple physical therapists on this show, it's a topic that we really Can hardly discuss enough.

As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end, so you won't miss any of our special hypermobility hacks. Let's get started.

I'm so [00:02:00] excited to chat with Wendy Wagner today, and I wanna start out by having you describe for me, uh, briefly what the typical patient is like that comes to your office for assessment and treatment. 

Wendy Wagner: Yeah, so a typical patient comes to my office. Um, with, um, presenting with a lot of different symptoms, uh, it's rarely just one body part as a typical physical therapist would see.

Um, I usually see widespread pain, chronic pain, um, pain that often doesn't correlate with their radiographic images that they've had done, unstable joints, um, a history of hypermobility, uh, and current hypermobility, um, experiences with subluxations, a history of using bracing to manage their Their pain, um, pain typically I would say most commonly in the head, the neck, the jaw, the wrists, the fingers, the back, a side joint, um, and ankles, uh, and then with lots of comorbidities.

So we have lots of GI dysmotility, we have lots of migraines, [00:03:00] uh, clumsiness. Um, poor proprioception, poor awareness of where their body is in space, um, pretty, pretty poor exercise tolerance, uh, for a variety of reasons, usually related to the comorbidities, um, but also just as a result of deconditioning from chronic pain, um, lots of intolerance to all kinds of things from chemicals to food.

Sleep dysregulation, which impacts, um, my rehabilitation programming, um, and lots of fear. Uh, lots of, I think we'll get into that a little bit more later on, but a lot of fear of movement. 

Dr. Linda Bluestein: Yeah, definitely. That, that sounds a lot like the people that I see. It sounds like we have very similar populations. No surprise, of course, since we're, since we're in this, in this shared space, so it's not surprising.

Yeah. Yeah. In the biz. Exactly. For sure. We know that finding the right physical therapist is so important, right? But it can be really challenging for a lot of people. And have you seen cases where physical therapy has been used incorrectly [00:04:00] at times? Are there, are there places where you've seen that it's actually not been beneficial?

I'm kind of sad to say yes. 

Wendy Wagner: Um, this is, uh, I will say more. Often then, uh, almost exclusionarily, um, my patients will, patients will come to me after having been harmed by a previous physical therapist, certainly not intentionally, but almost that they didn't know what they don't know, uh, and they just generally don't start low enough, just don't start foundationally enough with, uh, the rehabilitation programming, and so a patient will present to a physical therapist, um, with Um, you know, a certain level of pain and will end up terminating, self terminating physical therapy because the physical therapy is not only not helping, but it's actually making them worse.

So it's been something I'm pretty passionate about. I'm lecturing, um, uh, everywhere I can, every doctor's office that'll have me, uh, and I'm presenting to some medical schools here at Northwestern. I'm an alumni of Northwestern, and so I'm on a regular rotation to lecture to their family practice residents.

Um. And then into the physical [00:05:00] therapy program itself. I'm on a quarterly schedule where I'm presenting to the students. I'm trying to get the next generation trained up as well as I can. But it's really, really frustrating. Even pushing out into the local community. I'll try to train up some of the physical therapists that are in my local community.

And I hope that I I've not been successful. I will spend full days training them and I'll send patients to them and inevitably they're coming back hurt. So it's a really big source of frustration for me. 

Dr. Linda Bluestein: Wow. That's really interesting. It's great that you're doing that outreach work and education work like we're obviously having this conversation right now in order to educate more patients and healthcare professionals.

What are the, what are the key things that you want? You know, any, I'm sure there's going to be lots of physicians that are going to listen to this episode. So let's start with that group, whether they're, you know, internists or specialists and they're seeing people that have symptomatic joint hypermobility, what are like maybe the top three or so things that you really want them to know?

I want 

Wendy Wagner: [00:06:00] them to know that the. presentation that they're seeing locally is probably more global, um, than, than they anticipate. So, uh, if you're coming and seeing somebody for knee pain, for instance, it's probably, uh, poorly supported feet and a, and a hip weakness, not a knee problem. It's so that it's probably more global than I want them to zoom out a little bit.

Um, And I want them to listen to the patients, that the patients are, are very good reporters, I find, of their pain, uh, very reliable reporters, um, and to not discount, uh, the intensity of the pain or the intensity of the dysfunction, how much their functional lives are impacted, uh, I would say those are the, kind of the big things.

Dr. Linda Bluestein: Okay. And how does that message vary? You know, obviously we're going to encapsulate that pretty quickly and we're going to get into some more information here, but if there were like the top three things, if you just had literally a couple of minutes with a group of physical therapy students that are about to graduate, what would be those top things that you would want them to [00:07:00] know?

You know, the first 

Wendy Wagner: would be the recognize it. So that's really when I'm, you know, Teaching the physical therapy students, I want them to be able to recognize it. So we go beyond, well beyond the Beighton score, uh, and we're looking again, zooming out and looking at, at the jaw and at the wrists and, um, you know, to, to, to zoom out.

Um, and then also that the programming will be very different from what they learn in a traditional RFP. Epidemic outpatient physical therapy setting, but the treatment programming is going to be backed up. They think they're starting at zero and I'm going to have them start at minus 

Dr. Linda Bluestein: 10 kind of thing.

Yeah, that's interesting because before I even opened my practice, I had some conversations with some people who were already, you Physicians who are already taking care of patients with EDS, and we were talking about, you know, the whole starting low and going slow philosophy, and I thought that I knew what that meant, but only now do I understand, like, when we say start low and go slow, like, sometimes it's You have to really, really start so, so [00:08:00] small and, um, that can be hard.

Wendy Wagner: Yeah. I had a patient this morning, actually really good timing. Um, an older woman who, uh, is, has experienced so much pain that she's holding herself so tightly in her upper body that she's actually not able to breathe. So we started, I had a whole plan for what I was going to do with her today. And I threw it right out the window when she comes in and I see her holding.

And I can hear her short of breath, almost sounds like a, like a smoker, almost her, her breath pattern is so, um, so labored. And so we spent the whole session instead learning how to, how to expand our rib cage and breathe into our lateral and posterior, um, you know, lung cavities. And that was the treatment session, um, because I can't do anything if she's not, if she's not breathing and the, the poor breathing pattern turns into anxiety, which, you know, kind of becomes a vicious cycle.

So if I can't even get them relaxed, they're not even able to hear me. So, um, that's it. That's how low and slow we start. We start with breathing. 

Dr. Linda Bluestein: And, and it sounds like [00:09:00] you are very conscientious about not being, you know, attached to your agenda for that day, that when they come back in and they, yeah. I think that's another big thing.

Like you're saying that some people, maybe they've been to another physical therapist and they self discharge because they're frustrated. Understandably, they're not making progress or they're getting worse. So rather than going back to that person, they're going to try someone new, which I totally understand that.

But at the same time, it's a little, it's unfortunate because that's a missed opportunity for that other physical therapist to become more educated and informed. Yeah. 

Wendy Wagner: But at the expense of the patient. For sure. I include as part of my evaluation, a conversation or two or three, um, with their local physical therapist or with their local physician.

And I find that really helpful because. Um, if I find people who are willing to cooperate with me, which we can talk about how you find a good physical therapist, you find somebody who's willing at least to, to be, um, collaborative and to maybe admit that they don't know everything that they'd like to [00:10:00] know about this particular diagnosis, um, we'll have a lot more luck.

Dr. Linda Bluestein: So, in terms of, we talked about like the starting low, going slow, and also not being overly attached to the agenda, but what other ways in which physical therapy, um, would most ideally be modified for joint hypermobility? What are the other things that, um, that we need to know? 

Wendy Wagner: So it's all about balancing the body.

The body wants to be in homeostasis, and this is a, this is kind of PT 101, um, but it gets missed, um, in this population, it's, the body wants to be in homeostasis, wants to be balanced, front back, side to side, um. Symmetry of movement, not necessarily strength, but symmetry of function and our lifestyles.

Obviously, we know this is again, sort of what I call PT 101. Our lifestyles take us into this forward flexion, um, which then results in neck hyperextension and, um, what we call an upper crossed and lower crossed, um, posture. So PT for this population is a classic upper crossed position, and what that means is that the muscles on one side of the body are tight.

And the exact opposite side of the body, the muscles are [00:11:00] weak. So for instance, the pectoralis muscles are really tight and the rhomboids are weak or the hip flexors are tight and the glutes are weak. So, um, that's where, that's where we start and that if we can address the, the, the Muscles that are too tight, um, with some soft tissue work, but I'm going to backpedal a little bit here and say that the foundational goal of rehab for a patient with hypermobility is always going to be strengthening, so we don't do a lot, I don't do a lot of soft tissue work, I really focus on strengthening the weaker muscles, um, and then, again, foundationally is, is We call it core.

I don't know what people get triggered by that word, but, um, you're kind of your, your intrinsic, uh, skeletal stabilizing muscles really need to, to learn how to turn on. Um, and most of us, um, myself included, uh, what I would consider myself to have been a pretty high level, level division one athlete, uh, really didn't have a lot of, until I paid attention to it.

Um, so I say to my patients, you know, my way out of what is your way out of [00:12:00] pain? And they, I make them repeat this back out back to me, every train, every training session, my way out of pain is strengthening. Because they want to come to a physical therapist and get a lot of soft tissue work because they have a lot of tightness, um, but that's not going to be the solution to their problem.

The solution to their problem is going to be strengthening that which is weak. So, um, you know, we, we, we look back to, you know, anthropologically, if you want to go that far back, we, we look at the way rice farmers or toddlers, um, move their bodies and they move at a much, um, healthier movement pattern than we do as we have been upright.

And then. Patient with generalized joint hypermobility whose intrinsic stabilizers are weak, we'll say your ligaments and your tendons, and you're relying on skeletal muscles which then puddle because gravity takes over, um, we have learned very poor movement patterns, um, and so the goal of physical therapy would be to identify what's tight, to strengthen what's weak, and to teach, um, you know, healthier movement patterns, and then it goes back Beyond that, to, um, learn how to move safely with your body [00:13:00] mechanics and learn how to set up your home and work environment and recreational environment so that you don't injure yourself.

Dr. Linda Bluestein: Can kind of understand how the muscles are trying to compensate for that joint instability, but I think that that can make the picture confusing. Sometimes it is true that a that a weak muscle can be a tight muscle, correct? For sure. 

Wendy Wagner: Yeah, a tight muscle might be spasming, so it's not it's not a healthy movement pattern.

It's a it's a I don't remember my physiology, but the spasm of the muscle is not going to allow it to lengthen and to contract with, with the regularity that we need it to, um, to be functional. So yes, there can be tight muscles that are very, very weak. Those, those would be examples of your, like your, your packs are a perfect example of that.

Those are muscles that are in spasm and really tight. But if I asked you to bench press, you know, A lot of weight. You couldn't do it. [00:14:00] 

Dr. Linda Bluestein: Okay. And, and in terms of the, uh, deep stabilizers, the intrinsic deep stabilizers that you were talking about, is that something that's, that can, can be true of even people that are doing sports and things like that?

You mentioned that you did division one athletics and of course there's people where it's really 12 that they have generalized weakness. So, you know that they are going to have intrinsic weakness and of those deep stabilizers. but is that true even of somebody who might look like they actually would not have that problem?

Wendy Wagner: Yeah, for sure. I'll use the example of gymnasts that are very strong. You're in the performance, uh, industry, but you know, who have a, a really anteriorly tipped pelvis or a really, um, uh, arched back, um, who might be able to generate power in that position, but that who, you know, could possibly generate more power if they were in a, a more ideal skeletal alignment.

So. Um, yeah, I believe that, that to be true. And we learned that I was a swimmer. And [00:15:00] so, um, you know, you learn that that's probably not a coincidence either, that, that I was a swimmer. Um, it served my body well, but, um, that as, as we strengthen up our core, it's, it's, it's, I use the example of a, of a fishing rod.

You know, if you were, if you had a fishing rod and you had a lure on the end of the fishing rod, you were trying to hit a target with the fishing rod. But if your fishing rod is. is flimsy, your odds of being accurate, you know, out at the end of the fishing rod, it's going to be very poor. But if you have a strong grip on that fishing rod and you choke up on it, you're going to be more accurate with, you know, where you could drop the lure, so to speak.

And so that's my example of how important it is to have good control of our, our intrinsic stabilizers. It's kind of good old fashioned Pilates almost. I tell people and as I'm trying to explain it, it's, it's as old as, as Joseph Pilates was teaching back in the day, um, to strengthen 

Dr. Linda Bluestein: your 

Wendy Wagner: power. 

Dr. Linda Bluestein: Yeah, I definitely recommend that people do Pilates quite, quite often because I do think that's a good fit for the [00:16:00] challenges that people with joint hypermobility face.

Wendy Wagner: Certainly with modifications, if I were to send them on a reformer, I would give them some, some things to be careful of. I don't want them prone on the box. I don't want them bearing a lot of weight on a, you know, on a extended wrist. And I don't want them planking, you know, too soon, but the support of a reformer, So, in 

Dr. Linda Bluestein: terms of how people can find a physical therapist who, who, who is knowledgeable enough about joint hypermobility and or willing to learn, because, you know, you also see things where people say that they're, you know, EDS trained or they're certified or, you know, it's, it's very, very, very challenging.

I feel like as awareness has grown, it's almost like harder than it was before because people are slapping things on their website. And somebody the other day compared it to the gold rush and I think it has become really hard for patients to sort out where they can actually get quality care. What [00:17:00] kind of things do you tell people to look for?

So 

Wendy Wagner: I, I ask them to look for, and they'll often come to me with a history with a physical therapist so I can ask them kind of targeted questions about that particular person. Or if I say, if you're looking for. A physical therapist in your community, um, you just have to find somebody who's willing, willing to be collaborative.

That's, you know, who's willing to take, um, I don't want to say direction, but just to work together for us to be able to work together for me to, for her to tell me or him to tell me, um, what they know about the patient, what their strengths are, um, that they're observing clinically. But then for me to kind of say, have you thought about this?

So it's really somebody who's willing to be collaborative. Um, and it can be somebody, I hate to say it, but almost some of the younger therapists are more open to, you know, being willing to say, I don't know what I don't know. Um, so it's, it's, it's. It's very challenging. It's very challenging. And then if you get into a system, the other, the other tip I would say is if you can find a practice where you're, you know, [00:18:00] you're not one of one being seen every 10 minutes or getting passed off to, so some of the bigger physical therapy practices, their practice model, their business model, I'm sure they're fabulous physical therapists, but their business model just doesn't allow for the time that our patients need.

Um, I think, um, other patients may be able to, you know, um, Be given a couple of exercises and go and do them in the corner of the gym and somebody with hypermobility just can't do that because they're, they're just master compensators. And so they need a lot more attention, um, at least foundationally to as they're learning the beginning exercises.

Um, so you need to find a PT practice that has a different business model that can allow for more time. 

Dr. Linda Bluestein: Yeah, I ask, I suggest to people when they're looking for a physical therapist, I give them a list of like five questions that they should ask and that's definitely one of them. How are the sessions structured?

And when they go in for sessions, are they, you know, are they seeing the same person every time? Or does that vary? Because I know, For me personally, I, I really, really want to always see the same [00:19:00] person. Yeah. Um, unless obviously things happen in person, it could be ill or something like that, but, but otherwise you should be scheduled with the same person every time.

Wendy Wagner: I have a handout I created. Um, this is just in my, in my frustration. I just,

And I have a book up here in my head, and that's the name of the book, um, to, to have something in writing if I don't, I'm not able to talk to that person. And it basically gives some, some guidance on assessment that when you're assessing this patient, here are some things that you can look for. And then as you're planning your treatment sessions.

Here are some things for you to consider. So just gently making some suggestions on assessment and treatment planning and structuring the treatment sessions to a lot of our patients have orthostatic intolerance and a traditional physical therapy session. We'll have them up, down and all around. And, um, yeah, so that's really it.

Just being open to, to. to learning, to participating in some of the EDS echo programming that, um, that's available to them. And then there are some good books out there. You know, our colleagues just [00:20:00] wrote a great book called Taming the Zebra. Um, that's a very comprehensive textbook almost to, um, learning about the physical therapy.

Yeah, 

Dr. Linda Bluestein: I interviewed Patty and Heather about that book. I think that was episode 98, I could be wrong about that, but, uh, we'll try to look that up so we can link the correct episode in the, in the show notes. Yeah. So yes, there's, there's lots of great resources out there and it's so important. To have that good fit.

And I tell people all the time, if they're looking for a therapist, I'm sorry, I should, I should specify if they're looking for like a counselor or like a psychologist that is kind of like dating where you might need to meet with a few different people before you find the right one. Maybe the same thing is true for physical therapists that maybe it's a good idea to go in with an open mind of, you know, this might be the right person, but it also might not be the right person.

So I'm going to go in and I'm going to see how they. [00:21:00] How they respond and what they think of my situation and are they willing to look at, are they able to look at more than one part of the body? Because isn't that also a major insurance issue? Isn't that also a big problem? It is a 

Wendy Wagner: big problem.

Depending on the body, on their insurance, Medicare is really difficult about that. Um, so yeah, that is, that is a big problem. Um, 

Dr. Linda Bluestein: yeah, I, I really think that the whole insurance model is so challenging, right? Because with physical therapy, you have to show a certain amount of progress, but not too much progress.

And if you, if you go in for like a, like a knee problem, like you were describing earlier, you're That you're not really supposed to be addressing other parts of the body, is that, is that correct? 

Wendy Wagner: Yeah, and that's, that's obviously very challenging, it's rare that I find a knee problem that has anything to do with the knee, so, um, or much, much to do with the knee, for instance, so.

Dr. Linda Bluestein: Okay, um, in terms of how we can recondition the body without causing a flare, because we know flares are very common, so, [00:22:00] How do you go about reconditioning the body without that flare problem and how long, how long does that often take? 

Wendy Wagner: So, I thought about what I wanted to say before and it directly connects to this conversation, which is that the patient is really, I put a lot of pressure, not pressure, responsibility in the hands of the patient to say, um, you know, whether or not you're going to flare is, You have all that information inside of your body and you need to really tune in and check in to know what amount of activity is, you know, how much activity is going to cause you a flare.

And so if you lay down on my table and I say, you know, do 10 bridges and you know that if you're going to bridge, it's going to put too much pressure on your neck when you lift up your hips, but you do it anyway, because I'm the physical therapist. It's not the physical therapist's fault. It's, I really need you to take responsibility for being a good advocate.

And that's, that's. It's a challenge in our medical system in general, right? It's the fear the patients have of speaking up and, um, so the [00:23:00] success of managing flares, I put as much in the lap of the patients as I do the treatment planner, um, really. And, and that is, that is challenge, even more challenging when we recognize that patients with chronic pain are often very dissociative of their pain.

So they tend to go offline almost, um, and not be checking in with. They're real lived experience because it's painful. So, uh, I teach a lot in my sessions, too, about getting back into the body with mindfulness, with grounding, with the breath work. Um, because and as much as they resist that because it could be very uncomfortable for them.

for them to check in with their pain periodically. It is the only way that we will prevent a flare as if we're, um, you know, sensitive to, to what we know. And I always say there, there is a threshold, there is a ceiling and I draw a line. I'm a very visual person. And I say, you can bounce up, up and down below that line.

Um, but as soon as you, Pass your threshold of pain, then you can anticipate a flare. So you need to know where that line is [00:24:00] and that line changes on a given day, right? So the line will be different based on all kinds of things, based on where you're at with your mast cell support, your POTS support, um, your nutrition and your hydration and your rest and the time of season and whether you've been traveling.

And so that that line is a moving target, but it's the patient's job to really Stay tuned into that and to be a really good advocate for themselves. That's another, that's part of choosing the physical therapist too, right? Is it somebody, like you said, a dating experience? Is it somebody that you feel comfortable speaking up to, um, or not?

Because I think that's a really important part of the process. 

Dr. Linda Bluestein: Yeah. And that's really hard, especially I think early on in the relationship, because I think that, um, whether or not it's a perceived thing or if it's, uh, More true reality that an objective observer would make this note. I feel like a lot of people would be afraid to speak up, myself included, because we don't want the [00:25:00] physical therapist to think that we are lazy and or actually, I mean, I've heard people say they've been called lazy or been, the physical therapist did not take that information well, basically, from the patient.

So, um, it's tricky. I mean, I think if you've been working with a physical therapist for some time, and, you know, They know you and they, they respect you and they respect that you know your body. I think it's a little easier, but early on in the relationship, I guess, do you have any suggestions for how people can navigate that without coming across as that, that they're not trying hard enough or something like that?

Yeah. It just requires a lot of confidence, right? It 

Wendy Wagner: requires a lot of confidence 

Dr. Linda Bluestein: on the patient's 

Wendy Wagner: part to, um, be confident that, that what they're experiencing is, is true and is real. I think they doubt themselves, right? So they will lay on that table and say, this woman I was talking about this morning, um, said, I asked her to do something and she grimaced and I said, is that bothering you?

And she said, it is, but it's fine. So, you know, [00:26:00] they even doubt themselves, um, as to whether they're even experiencing the pain. that we're observing. Um, so yeah, you're right. Building the relationship with the, with the physical therapist is important, but it starts with the empowerment of the patient, right?

So that's where the patient education comes in. And that if they believe that they have an anatomical defect, a shallow socket of their acetabulum of their shoulder, then they're more likely to report shoulder instability. If they believe that they have that funk, you know, that anatomical So I think the more they believe, the more confident they are, the more, not assertive, but um, it's just, it will be a better relationship if they, you know, if they can be honest.

I think then, like you said, it's trust building that the therapist trusts that the patient is a good reporter too. So yeah, you're right. That's really hard. It's really, really hard. 

Dr. Linda Bluestein: It is. It's funny because as you were saying this, I was thinking about, you And, uh, the last time, not the last time, the two times ago when I was working with my physical therapist [00:27:00] and she wanted me to do uh, I had frozen shoulder, bilateral frozen shoulder, and we've been working through that for quite some time.

Like you said, it definitely goes up and down and sometimes, you know, uh, more problematic than others for sure. But she wanted me to do this external band exercise, external rotation exercise with the band. And I knew at the time that it was probably more repetitions than I should do more sets, more repetitions.

I should have said something. I've been working with this physical therapist for a really long time and she definitely respects me. And I could have said something, but I didn't actually. And after the session was over that night, I was really, really sore. I mean, probably not, I didn't go into like a terrible flare, but it was, you know, there's a certain amount of soreness, right.

That's like, okay. It was beyond that amount of okay. Soreness. So I think that speaking up piece is just really challenging for all of us. 

Wendy Wagner: It is really, and it's a learning experience for both. the patient and the therapist, right? So, [00:28:00] um, this patient I had this morning, she, she was grimacing and she said, Oh, that's too painful.

I don't want to go on. And I said, have you had that same experience of pain before? And she said, I have. And I said, how long did it last? Oh, just an hour or two. Well, I'm okay with that. If it's pain that only lasts an hour or two, then I'm okay with that. And she said, Oh, really? So, um, yeah, that's, it is. It is really hard.

Dr. Linda Bluestein: Yeah. That's a perfect lead in to kinesiophobia. So when I first learned about kinesiophobia, I was writing my first article about EDS and this was in 2016. I was writing about pain management and EDS and I came across the word kinesiophobia and I realized, Oh my gosh, that is exactly what has happened to me.

I am so afraid to move because I have injured myself doing small, simple things. It's such a common thing for people with EDS, POTS, MCAS, et cetera, to have kinesiophobia. What should patients know about [00:29:00] kinesiophobia specifically? 

Wendy Wagner: So the programming, you know, that, that will work best for this population often is about, um, learning, learning to find the muscles that are tight, learning to relax as much as you can.

Finding the muscles that are tight, learning to move in a, in a range that is. Not going to cause you pain before we move into the range that may challenge your tissues. So we start with patients with extreme kinesiophobia, getting them to just trust that their body can move at all. Um, and so that might be, uh, I had another patient this morning.

All her homework was to tuck up like a ball, rock like a ball and do some cat cow. And she said, well, that's not strengthening. And I, so I didn't tell her this at the time, but I said, I, I need you to. I need you to trust me and I need you to trust your body. So I need you to, we both, um, need a couple of sessions like this of not.

Not overworking or challenging your tissues so that you're ready to move to the next step. Those are the baby steps, right? 

Dr. Linda Bluestein: So when I [00:30:00] was in physical therapy for after my surgery, um, my physical therapist literally just had me lay prone and, and just, you know, flex and extend and flex and extend no weights on my ankle.

or just to get my start getting my confidence back. It was a very small range of motion. So I think, I think that that's so true. And eventually I was able to do weights. You know, I had a weight around my ankle and now I, now I can hike and do all kinds of things. So definitely building that confidence, starting low and going slow.

And I, 

Wendy Wagner: you know, I tell patients about some of my, my My past stories of, of how physical therapy went very well for a patient. I have a patient who started with three breaths and now she's on my rowing machine, you know, and if you tell somebody who can only do three breaths, um, that they're going to be on a rowing machine, they won't believe you.

And I'll tell them, well, I can tell you about, these are not real names, Mary and Susie and Katie, and they started with three breaths and I'm not saying you'll get there. [00:31:00] Um, we talk often about your functional goals. Is it, is it your functional goal that I'm rowing machine or is it to be able Pick up your grandchild, you know?

So anyway, yeah. The, the, the trust building is so important and it's funny, but I'm, I'm a scientist. I'm, I'm, I is my gift in the social work component of the physical therapy and not, not really, that's not really where my gifts lie, but it's such an important part of my job, so I'm mm-Hmm, I'm learning too to, to appreciate some of those nuances of being a good physical therapist too.

Dr. Linda Bluestein: Right. And knowing, and knowing which patients need to be held back more and which patients need to be a little more encouraged, because we're all different, right? So some people are what they need is going to be different from, from other people. Um, I want to make sure that we, uh, start talking about upper cervical spine problems.

Cause I know that's something that you specialize in. So can you describe for us the kind of problems that you see most commonly in the upper cervical spine and how you [00:32:00] address those? Sure. 

Wendy Wagner: Um, so patients. Don't often come in to my office saying I think I have upper cervical spine instability. They come in complaining of headaches.

Um, and neck pain and some diffuse kind of neurological pain, um, confusion, nausea, brain fog, difficulty with concentration, um, some, and those aren't even their primary complaints. Those are all, those all come out in my intake questionnaire. I, I ask about them because they, they may lead me. Back to focus here.

So, um, inevitably I, I don't have a percentage on it. I should write a research paper on it, but a very high percentage of my patients, I'll say more than half. Um, I will eventually ultimately identify that they have upper cervical spine instability. So what that is, is that we have the, you know, the vertebrae that are protecting the spinal cord.

Um, and at the top of the, spinal cord. The uppermost vertebrae, um, is your skull. So you've got your skull and [00:33:00] you have the bony protections of your vertebrae and then what those things are protecting are the soft tissue structures, your spinal cord, and then your brain. And in that junction between your skull and your first cervical vertebrae or between your first and second cervical vertebrae, um, they're kind of weak spots in the, in the, in the chain and the link.

Um, mostly, and this is, you know, kind of a, I talk about I don't know if I'm allowed to say this on podcast, but one of God's mistakes, um, is the knee, that the knee only goes one direction. Like why we have a knee that is, is, is only an anterior posterior directional, um, knee, I don't know. And same thing with the, the head and the neck, that the head is an 11 pound bowling ball sitting, I call it the pumpkin on the stick.

Um, it's just, it's just not well designed biomechanically to be able to support it. Um, or maybe it was, like I said, anthropologically back in the days when we're, you know, we're You know, um, we're moving in more healthier movement patterns, but the neck has become a weak spot, um, probably, and we know exacerbated by the onset of laptop, specifically [00:34:00] laptop computers, not just desktop, but laptop, because we're looking down more at our laptops and then certainly the telephone, the cell phone.

Um, so yeah, it's just a weak spot. 

Dr. Linda Bluestein: Sure. Sure. Um, we're going to take a quick break and when we come back, we're going to talk more about the neck and what we can do if we have symptoms related to any tissues in that, in that neck area and cape area. So we'll be right back.

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Okay, we're back with Wendy. So, uh, I would love to hear more about what you're finding with upper cervical instability and how you're treating that in this population. Because we know it's a very, very wide spectrum, right? There's some people that have, you know, very mild symptoms and we have people that are, you know, in a much worse place.

So how are you, Um, assessing that in a more detailed way and deciding how to proceed. So 

Wendy Wagner: this is kind of one of my passion projects. I personally have experienced it. So that's kind of how we get taken down these, uh, these roads, but I personally have a significant amount of cervical instability, um, that has caused a lifetime of [00:36:00] disabling headaches.

And so when I chose to focus in this area, um, It, I really had a good, kind of a good grasp of what it felt like, um, and then of the symptoms that it produced. So, the symptoms that it tends to produce first, I think we talked about were headaches, um, and just, and neck pain. Um, but where the instability is in that upper cervical spine, the soft tissue structure that it's in, Protecting is your brainstem, um, and off of your brainstem come your cranial nerves, one of which being your vagus nerve.

And I have a, personally, I have a passion in, um, kind of trying to prove to doctors and the patients that instability in that upper cervical spine could be putting traction on the brainstem and really having an impact, um, The, the health and the viability of that vagus nerve. So, um, we we've now, you know, kind of Dr.

uh, Fraser Henderson, um, and I have done some really nice work and trying to come up with a kind of a framework for [00:37:00] when we do imaging, um, what. Measurements on like an upright cervical spine MRI would put us in the, you know, down the, send us down the lane of suspecting, um, cervical instability. There's nothing we can measure really, um, nothing we can measure and say, yes, you have cervical instability necessarily, but there are some anatomical landmarks we can, um, put in relationship to each other and suspect with a high degree of, um, stability.

Suspicion that you have underlying cervical instability, but only one correlated with clinical symptoms, right? So, um, I'll have some patients that I'll come in with really horrible looking MRI results who don't have a lot of symptoms and vice versa. So it really has to be correlated with what the patient's experiencing.

And, you know, we've now, um, with some of my colleagues, um, we published an article, um, last year trying just to start the conversation about, um, exactly what the question, the question that you asked Linda, which is when a physical therapist is presented with a [00:38:00] patient with, um, what we suspect is upper cervical instability, what do we do about it?

And so the first step is to kind of grade it, how severe do we think, um, the presentation is. And so we identified like a mild, moderate and severe group of who we are the most suspicious of based on what their clinical symptoms, primarily what their clinical symptoms are, uh, and then how you treat them would be, you know, in reference to how, severe we think their symptoms are so you've got the one hand you have people with mild instability that just experience headaches on the other end you have people with um you know clinical symptoms that present as uh inability to stay awake and nausea and vomiting and um ataxic wobbly gait and um so and then we have everything in between so we have to identify how severe we suspect that um you know what their presentation is and then You know, guide their treatment accordingly.

And in some cases, we're not even treating these patients. We're, um, directing them to a neurosurgeon for assessment because we think putting hands on these [00:39:00] patients or asking them to do something that, um, they shouldn't do may further risk injury. So, um, it's, it's like, it's a puzzle. I like the puzzle of it.

It's, um, yeah, the, 

Dr. Linda Bluestein: And every patient is so different, so it's, it's not like you're doing the same thing every, every day. No. Although there's obviously a lot of similarities. And I did interview Leslie Rusick about that, uh, paper, so, and I wish I could remember offhand. I should have all the episode numbers memorized at this point, but that was around 95, I think, but we'll, we'll, we'll list that in the show notes as well, because that was, that was also a great conversation.

And it's wonderful. It's wonderful that you are a co author on that paper and I know you all really collaborated in terms of your clinical experiences because it's, you know, trying to design, design the perfect research study would be very difficult. So this was like an expert consensus, right? It's just, it's just the start, the start, you know, 

Wendy Wagner: it was just a way to put something out there.

And now we hope that other people pick it up and say, well, what if [00:40:00] we take the mild group and we do this? This or this with them, you know, how, what is their outcome like or, you know, so it's just the beginning of the conversation. 

Dr. Linda Bluestein: And, and when I asked for questions for you from my listeners, my followers and things like that.

Um, some people were asking about cervical spondylosis and you know, how did they know when it was like normal aging? Um, we know spondylosis referring to degenerative changes in the, um, We're talking about the cervical spine now, sorry, um, but we know that that's really, really common. Like, I think I saw a statistic recently that 90 percent of people, uh, basically my age and older, 90 percent of us are going to have cervical spondylosis.

So at what point, um, is pain, stiffness, noises, you know, things like that, um, when, when do you worry about that? And I'm, and I mean more from the standpoint of like you were saying, Oh no, this person actually needs to see a neurosurgeon, not be in physical therapy. Thank you. 

Wendy Wagner: You know, it's, 

Dr. Linda Bluestein: it's 

Wendy Wagner: really when we see presentation of neurological symptoms that are, um, [00:41:00] more global.

So if you have some numbness and tingling in your hands, I would suspect cervical disc herniation, unilateral cervical disc herniation, if it's one hand or the other, you know, if you have global neurological symptoms that, like I said about, you know, some of the concentration, cognition, nausea, vomiting, um, balance issues, um, then I worry more, um, about, um, You know, the, the stretching could be traction on the brainstem.

It could be compression of the brainstem, but because the bony protective rings around that brainstem are wobbling around, they're putting forces on that brainstem that they're not intended to endure, whether it's shifting laterally, side to side or traction or compression. So any of that can happen if the bones are moving around more than they should.

Dr. Linda Bluestein: Sure. If you do have, especially like, let's say it's the fourth and fifth finger, right? That could be entrapment of the ulnar nerve. It could be anywhere along the path that of the, that the nerves travel from the brain [00:42:00] out to the extremities and back. But so, you're You're talking about like really more central symptoms.

So, visual, auditory, swallowing difficulties, balance, those kind of things are being more worrisome. 

Wendy Wagner: Yeah. And we can test some reflexes, some central reflexes, the Hoffman's reflex or a gag reflex or Babinski or some of the central. Yes, correct. And that's exactly what I was speaking. It was more centrally, symptoms originally more central.

Dr. Linda Bluestein: Mm hmm. Okay. Um, in terms of treating flares of neck pain, do you have any thoughts about that? Yeah, I, you know, the, 

Wendy Wagner: the, so the, the flare of neck pain, I always say is two sided. One is to prevent it from happening in the first place, right? And then what do you do with it once you have it? So, um, the preventing it in the first place is, um, your alignment, your body position, your, um, just how you carry yourself.

I, I really dig into a patient's day. How do they, what do they, what When I say, when you get [00:43:00] tired and you sit down, where are you? And they say, I'm in my family room. No, where, what are you saying? I'm sitting on my couch. What does your couch look like? Uh, it's, you know, it's, it's soft. Does it have a back?

How high is the headrest? Can you support? Is there a recliner? So I'll dig down into trying to figure out how to prevent the neck pain in the first place. Usually it's from forward head position for extended periods of time. Like I'll say, did you, you know, they'll say, Oh, I combed my cat or I cleaned my bathtub.

Um, or it could be they're often triggered by being a passenger in a car, um, particularly a passenger, not a driver, interestingly enough, because the driver intrinsically anticipates all of the motion of the car. They know when they're going to stop and their brain tells the muscles that turn on when you're a passenger, you're almost, I hate to use the word victim, but you're almost a victim of the driver and that you're, you're not able to respond.

to, to limit the excess head movement. So, um, so we, we figure out, we problem solve together how to limit the opportunity for the flare [00:44:00] to happen in the first place. Um, and that's often with, like I said, neck, neck bracing or choosing different movement patterns or supportive rest positions, um, being very mindful of your body mechanics, um, maybe using a bite block of your TMJ is what's causing some of the neck pain to, um, heater, heater ice.

You know, if you've already got into a flare, um, and all the same, kind of the same preventative strategies all would work too if you're in a flare, but you know, we do use, we do use a neck brace. This is kind of a controversial topic, um, in the PT world is, um, you know, as we were trained in PT school, we were told, you know, to rarely brace patients unless they were recovering from surgery because we don't want to, Um, decompensate the muscles that are intended to do the job.

And in a patient with a intact primary stabilizing system, I would say that would be true. But in a patient with, um, a connective tissue that we know is faulty and their intrinsic stabilizers or ligaments and pendants aren't doing their job, sometimes we need to give [00:45:00] a little exoskeleton support. And my guidance for that typically is to be used in a flare temporarily for a flare or to prevent or limit.

Um, what you know may cause you a flare. 

Dr. Linda Bluestein: Okay. So, so, so first of all, I didn't know cats needed to be brushed, right? 

Wendy Wagner: I was like, what? I actually have a patient who hired somebody to come brush your cats. So 

Dr. Linda Bluestein: really? Wow. Wow. I was like, that's new to me. Um, and, and then the second thing I thought of, as you were saying, that was the last Like really bad flare that I had of my neck.

The most painful thing was when my husband and I had to go pick up a car that was being serviced. And I was the passenger and he was the driver. And when we drove to pick up the car, it was absolutely horrible. And then, and then fortunately I was able to like turn my body enough, you know, to safely drive home.

And that was better. Driving home was better. Driving out was, you know, More painful. So that's really interesting. 

Wendy Wagner: Yeah. So I'll often have patients break, put a brace on, you know, when they're a passenger [00:46:00] in a car and a hard cervical brace, if they're really symptomatic or, um, you know, in a flare, trying to perhaps prevent a flare before a wedding, important wedding this weekend, I'll say, throw your hard cervical collar on when you clean the bathtub, throw your hard cervical collar on before you, if you're a passenger car, you can't do that when you're driving, we need you to be able to have your neck range of motion when you're driving.

So that's not safe, but you can put a soft collar on. Um, when you're driving, uh, and then I have all kinds of ergonomic pillows and things and to put in your car to try to give you a, um, a, you know, a more friendly, um, driving situation, but yeah, being a passenger car is hard. In fact, I, I almost insist my husband, I almost insist driving all the time, not because I'm a better driver, but because it will, it will just limit my.

My likelihood of flaring, so. 

Dr. Linda Bluestein: Interesting. Okay. And in terms of soft versus hard cervical collars, you know, I've heard people, some people say that the soft cervical collars are, you know, kind of almost like a neck warmer that really [00:47:00] doesn't do much. But, right, you have to be careful with any kind of rigid bracing.

That, uh, especially in terms of duration and, you know, like you said, using it under very specific type of situations, um, how do you help people, uh, choose or do you, I guess I should ask, do you help people choose a brace and or do you refer them someplace or what do you do for that? 

Wendy Wagner: So the hard cervical collar, I have the three that I use most often in my clinics.

I'll have them come in and try them on. Um, I have the Aspen Vesta. I have the Miami J, um, which is a little bit less supportive, um, but often more comfortable for people with longer necks. And then I have something called the, I can't pronounce the company. I think it's Thawasni. Um, it's a rigid brace, but it has the ability to lower the chin rest, raise and lower the chin rest, um, which gives your jaw kind of a break.

Um, often those rigid braces are pretty hard on your jaw, which is probably already unstable. Um, so, um, We'll try them [00:48:00] on and see what feels best. I even have something that's really flimsy. It's a metal, um, it's a little metal support, um, that just braces on your sternum that doesn't really limit side to side movement, but helps you with that forward back, which tends to be the most provocative, um, positions leaning, you know, flex forward, head flexion and neck extension.

Um, and that's another option that we'll try in the clinic. And then I also have a whole bin of soft Um, collars that we'll try. And like you said, some can be neck warmers. You have to find the right, the right amount of support. And I, um, you know, if I, I demonstrate for them, if you can put a, if you can put a soft collar on and then you can just kind of relax into it, um, then it's a good, a good collar for you.

If you can't relax into it, Um, then it's not doing anything for you. So we try lots of, actually, this is, this is going to sound crazy, but I'll say go on Amazon and pick out what you think looks like it would help you the most. I'll say that with other braces too, because the [00:49:00] patients know their body almost, you know, better than we do.

So I'll say pick out order three that you think look like would be the most helpful for 

Dr. Linda Bluestein: you and try them. Okay. And then what about the instructions that you give for, let's, let's say hard cervical collars, because that's definitely more significant in terms of like, uh, only for 20 minutes at a time, or what about sleeping in it, not sleeping in it, that kind of thing.

Yeah. So the, the 

Wendy Wagner: neuro, if you talk to a neurosurgeon, you'll, you'll get different answers, um, to this question. So I, you know, I will say, I, I typically say not more than 15 minutes a day, if you can help it, if you have to be up for it. Moving around, doing some activity, feeding yourself, feeding your children, you know, doing something that, that you, that you need the, the hard cervical collar for.

Um, or, you know, we also use it diagnostically, interestingly enough. I'll have patients put it on for a couple of days. Um, most honestly, the prescription is supposed to be 24 seven, 24 hours for a couple of days. I, very few people can actually [00:50:00] sleep comfortably in it, but, um, for the majority of the time that you're awake, at least if you could be wearing a hard cervical collar, if your symptoms improve and I say symptoms, I mean, less so I'm less interested in if your head and your neck pain get better, I'm more interested.

And if your vision, You find your convergence of your vision is better if the ringing in your ears goes away. If you could swallow with less of a lump in your throat, you know, if you're more alert, um, if your vertigo, dizziness goes away. So some of the nerve, what I'm calling these diffuse neurological symptoms, um, if those improve with cervical spine stabilization with the hard socal collar, then, you know, that, that, that's another indicator to us that we've got instability.

Um, yeah. There. And then there's imaging too, right? We can do, we even talked about, there's upright loaded, um, flexion extension MRIs or dynamic motion x rays. There's all kinds of imaging we can do to, to try to further substantiate, you know, how, um, likely we think upper cervical spine instability is contributing to your symptom, your overall symptom profile.

Um, I'll, I'll [00:51:00] argue that, that, uh, some of my dysautonomia patients may not have central immediate dysautonomia at all, may have, um, So much mechanical instability right near their vagus nerve that their dysautonomia is coming from mechanical instability. 

Dr. Linda Bluestein: And if you were, I'm going to put you on the spot here, I'm going to make you, I'm going to ask you to not make you, I'm going to ask you to make an estimation.

If you exclude the, what I hope is a very, very small percentage of people that you say, no, you need to see a neurosurgeon like right away, let's exclude those people for a minute. People that you see that you. feel have cervical instability, what percentage of those do you think are able to make significant gains with physical therapy and some of these other, you know, maybe they are using a little bracing here and there versus the number that are needing to go, uh, or I should, that end up having surgery or maybe prolotherapy or some other regenerative medicine type thing.[00:52:00] 

I 

Wendy Wagner: will say, just before I even answer the question, I will say more than half of my patients probably I refer for a neurosurgical consult. So most of the people who come, who come my way, who end up in my office, uh, are, are pretty profoundly impacted, uh, and are in my moderate, uh, Just severe, um, you know, presentation for instability.

Um, and then you asked me how many, oh, how many of them get better? Um, most, and this is also a messy question because if, in my patients who are committed, have the time, have the resources, Um, to follow a program, start low, go slow, kind of that, the programming, which we can talk about, um, what the programming looks like, um, the, the patients that are able to kind of stay with the program for a variety of reasons, like I said, they have the time, they have the financial resources to [00:53:00] pay somebody to guide their care, um, You know, and have the intrinsic motivation, um, to work the program, uh, most will get better, you know, and even if I sent them to a, to a neurosurgeon who said, I think they're a potential neurosurgery candidate, most of those patients who come back to me, most of those patients will still get sent back to me saying, I won't consider surgery after you've gone through a course of dedicated, you know, cervical spine strengthening, which there are not, there just are not a lot of us out there that Understand this.

So neurosurgeon will say, go back and do some PT, but they may go back and do the wrong PT. Right. So I would say most, I would say I can help most of the patients who come in my office. If they were to be able to have the, Ability to commit to a program, physical therapy program. 

Dr. Linda Bluestein: Mm hmm. Mm hmm. Okay. And yes, I definitely have had a number of patients that I have referred to neurosurgeons and the neurosurgeon has, you know, [00:54:00] evaluated some of the imaging and things like that and said exactly what you just said.

You need to do six months of dedicated physical therapy, um, before. I would consider doing surgery, which, which I'm glad because I mean, we know that these are really big surgeries and we don't want to be venturing into that territory if it's, if it's not really necessary. 

Wendy Wagner: Yeah. And what I'll tell patients is, you know, there, there are joints that are hard to strengthen and, um, not every physical therapist would agree with me, but I, I, there's not a lot you can do to strengthen a wrist or an ankle, right?

There aren't red, beany muscles that are crossing those joints. You can certainly strengthen tendons with loading and all that, but a neck, Um, has a lot of musculature, and so we can have a very big impact on joint instability by strengthening all the muscles of the neck, and if you were to strip it away, there are layers and layers of neck muscles, not just a couple of them.

We've got layers, um, and I've got pictures all over my office to try to prove to patients almost through patient education that you, you've [00:55:00] got layers and layers of muscles in there that we can strengthen with very targeted, um, exercise, um, so, It's, it's definitely a, it's definitely, and even if I can't get you all the way, we will get you to a place where, um, you know, you're, you're maybe a little bit more functional and there a very small percentage of my patients, I'll be honest, end up having actual sur you know, spine surgery, maybe less than Mm-Hmm.

I less than 5%. Um, 

Dr. Linda Bluestein: Mm-Hmm. , 

Wendy Wagner: you know, but I'll also say maybe more than half, don't follow through on the programming and 

Dr. Linda Bluestein: Mm-Hmm. 

Wendy Wagner: End up back at the neurosurgeon saying. Fix me. You know, so it's, yeah, it's, yeah, 

Dr. Linda Bluestein: it's hard. It's really hard. Yeah. Yeah. No, that's really, really hard. Um, speaking of neck muscles, I feel like you've been anticipating my next question every time.

It's great. It's great. So, so I've noticed when I examine people, the sternocleidomastoid, which is, uh, for those that are watching on YouTube, they can see me pointing [00:56:00] to, to the, to the muscle right here. Um, that goes from your sternum, um, up to basically like the angle of your jaw, um, That muscle and the scalenes, which are, which are buried kind of underneath there, I've noticed that those muscles are just like, just have such high tone in, in my patients.

And so many of them have coat hanger pain. So I'm going to, again, I'm showing like, basically it's imagine like a coat hanger. So it's from the back of your head out through your shoulders. A lot of people have coat hanger pain and this, you know, high tone situation. How do you address that? 

Wendy Wagner: So I'll get back to my question.

My way out of pain is strengthening. So a typical presentation of somebody with really spasms sternocleidomastoid muscles or scalenes, which 95 percent of my patients will present with spasming, A very, very high percentage, more than not, um, like you said, have, have overactive SCMs and scalenes. Um, I say to them, you're gonna, you'll go to your physical therapist and, or your massage [00:57:00] therapist and they'll work those, they'll get those to relax or release.

But not until the, the body trusts that the right muscles are working, will those muscles ultimately relax and the same is true with coat hanger pain. So, um, you know, if you're in a posture where your shoulders are slumped way forward, um, and you've got these muscles stretching out across the back of your chest.

The back of your neck and the back of your shoulders that are really weak and are being tasked with trying to hold you up against gravity, um, yeah, they're gonna be irritable and, and talk to you. So, um, it's, it's, it's, I will recommend soft tissue work, but always with the caveat of my way out of pain is strengthening, um, and it will be strengthening the right muscles.

Oh, and then certainly heat, um, you know, heat, uh, gentle, gentle movement, um, Some soft tissue work, um, some bracing, uh, you know, if we need to get those muscles to, to stand down, so to speak, so they're, they're, [00:58:00] um, overactive because they're, they think they're trying, they, they, they think they're being very helpful, um, but we have to convince them that they're not needed here today, that, that they can stand down.

Dr. Linda Bluestein: and, and posture is such a big part of that, right? You, you talked about the pumpkin on top of the toothpick and as if we do go do that forward posture now, now we've made the head a lot heavier, right? And we're putting a lot more strain on the, on the neck. Yeah. That 11 

Wendy Wagner: pound head for every two inches, it moves off of midline, um, doubles in weight.

So your 11 pound head, you move it forward, two inches becomes a 22 pound head becomes. You know, you move it four inches, it becomes a theoretically and in proportion to the rest of your body of 44 pound head. So, you know, we all know it, right? We all walk around. I have this conversation with patients and they all sit up straight and then so do I, you know, right?

So we all know it. Um, but it is, you know, it is, it is PT 101 for a reason, because that's, that's, that will be, that will serve them the best as if they can get [00:59:00] themselves in alignment like that. And I say supported too, supportive alignment is okay too. You can be in a recliner. Um, and be in alignment as opposed to craning your neck up against the headboard of your bed, you know, so there are ways where you can, you don't have to be in alignment and free gravity.

And we have, we have exoskeletons, we have body braids, we have compression garments we can wear to help us with that exoskeleton of being upright. Again, if we. have to, and to teach, not just when we have to, but also to teach our body where it's supposed to be, right? We have, we've talked about the dissociation of the pain.

We also have this really poor sense of proprioception, um, the body awareness, um, and sometimes those, those other exoskeleton compression garments can help us with that. Kind of went off tangent there for a bit. 

Dr. Linda Bluestein: No, no, no. That's okay. That's okay. And I'm, and I'm curious to ask you if you've, if you've encountered this.

So something that I've noticed, so I've been dealing with, as I mentioned, you know, bilateral frozen shoulder, but also cervical spine things for forever [01:00:00] and TMD. And so it's always great to get to talk about some of these things that, you know, obviously a lot of us struggle with, but one thing that I've noticed, which is really interesting to me is If I have a lazier day and I end up watching TV or something for a longer period of time, even if my head is supported, I often will then have more of a flair of pain, whereas if I'm moving around more, I actually have less pain.

I, it, like the other day, I was, I was, I went on a hike and before I went on the hike, I was in, I was having a lot of pain in my neck and I kept laying on the floor and trying to, I was in a hotel room. So I was laying on the floor and I was trying to figure out what I could do because I didn't have it.

You know, sometimes I'll do like a tennis ball kind of with my upper traps and stuff like that. I couldn't do any, any of that. So I kind of laid on the floor to try to kind of get my musculature to relax and things like that. Um, but then after I went on this, this hike. I went on the hike and I felt fine on the hike and I felt much better afterwards.

So do you have any thoughts about that? [01:01:00] 

Wendy Wagner: Well, motion is lotion, right? That's our little, one of our many, many little kitschy phrases. Um, but yeah, so lubricating the joints, um, teaching the body that, that the body was built to move. Uh, we weren't meant to sit. Um, you mentioned supportive rest position and you got sore.

We often need to fidget, fidget a lot, right? constantly moving our positions. So if you're statically in one position, no, we weren't meant to be awake. Again, I go back anthropologically, I'm getting, getting all history on you here. But like, if we go back to the way our bodies were, were for millions of years, or hundreds of thousands of years, for sure, we were, we weren't sitting, watching TV or resting, right?

We were always in motion. So that's what the body was designed to do. So it makes sense that being static for an extended period of time, Um, you know, wouldn't make you feel good even if you're supported. So I teach, I teach all my patients this pacing concept, these little micro breaks throughout the day.

And, um, part of that micro breaking for some patients, it's to stop [01:02:00] moving and rest. And for other patients, I say, you gotta get up and move, right? So it's depending 

Dr. Linda Bluestein: on the patient. Sure. Sure. So, um, in terms of, you mentioned about, about release and, uh, doing some like soft tissue work, are there certain things that people can do for themselves that you find beneficial?

Specifically for neck pain or for all over body pain? Neck, neck, cape, uh, let's, you know, generally kind of stick to that area. Yeah. 

Wendy Wagner: Yeah. Um. You know, not, I can't remember how much that we haven't already said, you know, with just being careful about the way that you move and how supportive it is. Um, you mentioned the tennis ball, you can do some soft tissue release, um, work temporarily.

There's the theracane where you could kind of really get in there and do some trigger point. Um, yeah. Release, um, neck, the neck muscles, it's funny people ask me heat or ice and I say whatever your body [01:03:00] thinks it wants right now because we can, we can heat it to release it. The body's really smart, but you can heat it to relax it, or you can ice it to stop the swelling.

So, um. Uh, yeah, you just have a bit, I call it, you know, I have a bin of braces, I have bins of braces, I have wrists, a bin of wrist braces, I have a bin of ankle braces, I have a bin of neck braces. Me too. And I, those are my personal braces. We're not even talking about like professional braces, you know. So, um, yeah, just being careful, you know, with where you're at on that, on that likelihood of flaring that thresh, we talked about that threshold where, you know, where are you at?

How much activity do you think you can tolerate? Where are you, you know, where you're weeding your garden, if you're weeding your garden all day, you probably shouldn't be making a big meal, you know, so. 

Dr. Linda Bluestein: Just trying to pace yourself. Sure, sure. And what about sleep? Um, you know, I sleep with a big pillow between my arms and a big pillow between my knees, and that seems to work generally quite well, but [01:04:00] I've had to vary like the pillow under my head, depending on where I'm at with my neck.

Um, do you have any particular tips for sleeping positions? 

Wendy Wagner: Kind of just what you said. I, you know, the neck, the, The pillow that goes under your head is critical, is critically important. And I say to people, you know, they say, I've got four or three, four or five pillows in my house and none of them seem to work.

I said, then buy six, seven and pillow number six, seven and eight, you know, until you find the right pillow that works for you, keep looking because it's just critical and, and the definition of a good pillow is one that, you know, if somebody were to take a picture of you, that your body is in decent skeletal alignment, and that typically that supports your neck, that has some kind Some kind of soft, um, so that you're not just laying on the, on the, I don't know what you call the posterior part of your head, but that your whole, the whole curve of your neck is, is well supported, uh, in all positions that you sleep in.

You know, certainly if you've got neck issues, nobody should be sleeping on their bellies. Um, I'm a belly sleeper. So I'll call it three quarter. Yeah, you'll call it like three quarter prone. We used to call it in PT [01:05:00] school where I'm kind of on my side, but kind of on my stomach and pillows are supporting me everywhere, everywhere else.

So certainly pillow that's well supporting your neck. And I said, You know, people say, do I have to spend a lot of money on a pillow? I'll say probably, you know, your cheap foam pillows are probably not going to do it, but maybe you'll find a good cervical pillow that, that will fit you just right. You know, kind of a Goldilocks thing.

Um, and then typically a pillow behind, you know, like you said, between your knees, I do the same thing between my knees. I hug one and then I'll put one behind my back too. Um, often if I'm Not too hot. 

Dr. Linda Bluestein: Yeah, that's funny because I literally actually just had this conversation with my physical therapist recently and I ended up switching from a much more expensive pillow to a older pillow that I had in my house.

I I probably, I don't know how many pillows I have in my house, but it's a lot. And I found this older pillow and actually it worked a lot better than this more expensive pillow that I had. So [01:06:00] like you said, it requires a lot of trial and error, unfortunately. 

Wendy Wagner: I just say don't give up. The pillow's critical.

Right. It's really critical. Don't give up. 

Dr. Linda Bluestein: What, what about one last quick question on that because I do have one other question that I want to ask before we get to the, to the hack. Um, what about gel? Because I had a physical therapist once who, who said no gel pillow because it's, because it didn't have enough give.

Oh, I think it's fine if 

Wendy Wagner: you're, um, I think if you're, again, if it supports your neck and you wake up in less pain, you know, patients will tell me once they find the right pillow, you know, I'm finally waking up Not in pain. It doesn't, doesn't say anything about how the rest of my day is going to go, but at least I'm not waking up in pain.

I think gel is, I think they're fine. Bamboo is fine. Like you said, an inexpensive pillow is fine. Whatever the pillow is, but, um, yeah, it's just, it's fine. Keep, keep looking for the right pillow. 

Dr. Linda Bluestein: Sure. Sure. Um, the last question that I wanted to ask before we get to the hack, uh, probably we could talk about this for, for a long time, but do you have any tips, you [01:07:00] know, it's so challenging with the siloed, uh, medical system that we have and, and I know, you know, we kind of talked about a few things before this, this recording, do you have any tips for people that are really struggling with that?

You know, they're, they're struggling. There may be, they go to a neurologist who's willing to deal with their neurologic issues, but they aren't able to address anything else. And then they go to an orthopedic sports medicine doctor who can address some other joint issues one at a time, probably, probably a separate visit for each one.

Do you have any, do you have any tips? 

Wendy Wagner: Um, a couple. One is, um, if you, you know, if you can. Find a good primary care, right? If you can find a, um, even better, if you can afford it, a good concierge medicine doctor so you have access, you know, ready access to them because you're, you're going to have a lot of questions if you've got a lot of body systems that are affected.

Um, go on social media and get in touch with me. Post that question in your area. Um, who, who do people like? I, you know, these social media groups are really effective at helping patients network and find other physicians that, you know, you have to take it with a grain of salt. Some, [01:08:00] sometimes I'll see perfectly good physicians getting panned on social media, but, um, then vice versa, um, patients, physicians that are, you know, held in high regard that I don't have quite as much respect for.

So it's, but I think that's a good place to start. Um, certainly if you have friends that have had good experience with, with With doctors, I, you know, I, I did a study, I did a little, um, I put a survey out to, uh, the patients with EDS in the Chicagoland area and we, we were able to hit, um, I think we had 2, 400 people that we targeted and we got about, I 

Dr. Linda Bluestein: don't know, I 

Wendy Wagner: forget, 300 and something.

50 something like that responses to a survey asking them, you know, if a, if a center of excellence were to present itself in Chicago magically, um, what parts of it would you use, would you use it, um, you know, and for what reasons, and we just got really amazing data back, uh, 94 percent that their, that their symptoms, um, negatively affect their ability to work, um, go to school and take care of their family, um, you know, we, we got a whole incidence [01:09:00] of, of the different comorbidities, so we can, You know, we can validate to patients that there are, they're not crazy, that their multiple body systems are affected.

Some of that is, and answer your question too about how do you find good providers in these silent medical system, is just telling the patients you're not crazy. You need a provider in 12 different disciplines because 12 different body systems of yours are impacted by your underlying connective tissue.

Um, so getting them to have to persevere and say, okay, yeah, you're right. I need a good car. You know, I have a good cardiologist, so I should be good. I'm like, well, but you might need a good neurologist, a good gynecologist and a good, so even getting the patients to, to buy into the fact that they need to actively pursue.

Uh, excellence in their, given, even given their solid medical system. Um, and yeah, so we just, we had, we had, we got all the results of the survey that we expected that, you know, patients, 11 percent of the patients surveyed said that they spent 20, 000 a year or more out of pocket on their health related expenses.

[01:10:00] Um, so. Um, you know, 95 percent of the patients said that they had been medically gaslit. Um, so anyway, we just, we just got this really interesting data basically to validate the need for more collaborative care and that our silent medical system obviously doesn't work in this population, which we know, um, and then how we come up with a, a better medical model for these patients.

I'm just, you know, I'm just not sure that jury's still out. We're all, all of us experts are all still trying to figure out how to support these patients the best we can. And I'm. Um, you're doing great work doing this podcast even just to get, yeah. Get people to believe themselves so they can then advocate for themselves in the medical system.

Dr. Linda Bluestein: Yeah. And I, and I have lots of patients that are seeing a lot of different specialists and they'll say, well, you're my quarterback. You know, I'm seeing all these other specialists, but it's really putting a lot of responsibility back on the patient. Like you were talking about earlier, because they are then often responsible for.

Getting the records to the different specialists and things. And I think that the patients often who do the [01:11:00] best are the ones, like you said, who, you know, are fortunate enough to be able to afford, you know, a higher level of care. They're able to have more support in terms of keeping track of their records, getting their records, people going with them to appointments.

Helping take notes and things like that. So, I mean, it's, it's, uh, there's a lot of social aspects to this that I think are also, you know, so challenging. For sure, right. And we, I preach this one 

Wendy Wagner: pager all the time and patients are, my patients are sick of hearing it. But I'm like, could you come up with a, give me, give me a one pager.

I'm going to the, to the cardiologist. I've got my binder and I said, give me a one pager because they're not going to read that. So, we talk a lot about your one pagers. In fact, patients don't pay me to. to sit with them while they do their one pager. That's how critically important I think it is that they get that right.

They get the most they can out of that doctor's appointment. And like you said, I'm glad you mentioned bringing other people with you to their appointments. I just think that's so important because they get, they go in thinking they're gas lit. So they're, they're going to be gas lit. So a lot of times [01:12:00] they're, they turn off, they dissociate from their pain.

So having another person with them there, I think it's really, really important. Um, I'm glad you brought that up. 

Dr. Linda Bluestein: Yeah, for sure. And another pair of ears and everything. So, yeah. All right. Um, I always like to end every episode, as you probably know, with a hypermobility hack or two or, um, whatever we have time for.

So do you have a hypermobility hack to share with us? 

Wendy Wagner: So I sort of mentioned that, um, one of, one of my hacks is pacing, you know, it's, it's, it's Sounds so trivial and sounds like something we should know how to do, but I really have to teach it. And, um, the, the, the idea that, and I use myself as an example, I'll say to the patient, um, you know, before you, before you walked in the door of the clinic, if I were furiously studying Your note and then went into this, you know, two hour appointment with you.

I wouldn't make it through the appointment. So my hack is to lay down on the ground and do a little bit of, you know, deep breathing and relax, supportive, relaxed [01:13:00] positions. And then I get up and I do your two hour appointment. And then when you walk out the door, I can't sit down and write your notes. I have to, um, I have to do a little rest break myself.

So. Um, I just, I, I, I say, I'm, I'm one of you and I have to do the pacing to get through my day and that's what I've found to be really helpful. So I'd say pacing is just really important. 

Dr. Linda Bluestein: And that's a great example. That's, that's what, that's what I do, uh, too. So yeah. Yeah. I mean, I can't do it. 

Wendy Wagner: Yeah. I can.

My brain wants to do it. You know, as soon as you walk out the door, I'm going to want to sit down at that computer and start, you know, writing all my notes up. Um, but if I do that, I won't finish the report and I've learned that. So I have to, so that's really my best, my best hack, I would say, you know, is pacing.

And then, like we talked about finding all the right supports and braces, um, you know, to do the activities that you want to do. I've, I've found my favorite, um, You know, my favorite wrist brace and my favorite tape and, you know, and I pack them on my trips. The other thing I do is I've got [01:14:00] almost half a suitcase for my bracing.

So, 

Dr. Linda Bluestein: um, yeah. Sure, sure. And, and so long as we're not using the, you know, completely rigid braces, the whole idea of muscle atrophy, um, And from disuse, um, is something that we probably don't need to worry about too much if we're, cause the idea with the bracing and the tape and that kind of thing, right, is to improve the alignment and to make it so that we actually can move more and move better because we have that support.

Yeah. And again, this is so messy because 

Wendy Wagner: I have the patients who will abuse quote unquote abuse the brace and we'll use it too much. Um, and then we do worry about that and how that works. Um, But the majority of patients really honestly need permission to use the brace, and so I'm there to give them that permission.

Dr. Linda Bluestein: So even if it's not a rigid brace, you feel like you can get into a disused type of situation if you're overusing the brace? 

Wendy Wagner: Um, I would say it depends on the body part, you know, a wrist, I'm going to say not [01:15:00] really. You know, if you need to wear a wrist brace to drive and to type and to lift that heavy pot off the stove, I, I'm going to say use the wrist brace, um, a good part of your functional day.

Um, but do I want you in a knee brace all day? Definitely not, you know, so it sort of depends on the body part and it depends on the likelihood and why are you using the brace, right? So are you using it just because you think it's going to fix your owie, so to speak? No, then that's not the right reason, but if you're using it because you want to be in good alignment, um, And minimize the chance of flare, then that's a good reason to use it.

You kind of have to figure out. 

Dr. Linda Bluestein: Okay. Well, I'm, I'm so grateful to you for coming and chatting with me today. Uh, I really have enjoyed this conversation and I know the listeners will as well. Yeah, this was great. Yeah. Before we go, are there any particular projects that you're involved in or research that you want us to know about?

Wendy Wagner: Um, you know, I'm sure we'll do some follow up to our, um, cervical instability, uh, [01:16:00] Um, research, uh, the next step would be to start trying to see what, um, therapeutic treatment techniques would be helpful for, like I said, for those different categories of people. Um, and then I'm passionately trying to find a collaborative network in Chicago to support my patients and I'm really, really frustrated.

So if there are any docs out there in Chicago that want to work with me, um, Give me a call. 

Dr. Linda Bluestein: Okay. And speaking of giving you a call, um, where can people find you? 

Wendy Wagner: On my website? Um, yeah. I, um, wendy4therapy. com is my website. Um, and if you Google EDS, Chicago. I'll come up pretty quickly. Um, and you can find me in that way.

So I am unfortunately booking out pretty far, just like everybody else, uh, who works with this population. And I'm not proud of that. And I wish it was different. Um, and I'm working on trying to shorten that wait list, but for right now, um, you know, I'm We're all doing the best we can. 

Dr. Linda Bluestein: Right, [01:17:00] right. And I want to point out that Wendy for therapy is with the number four, correct?

Correct. Yeah. Wendy for therapy. So, all right. Well, thank you so much. We've been trying to do this conversation for quite some time. It's wonderful. I can't believe we finally did it. Yeah. Thank you.

Well, that was a great conversation with Wendy and I feel like we've talked to a lot of physical therapists. I feel like we still need to talk to a lot of physical therapists because it's such an important topic for people with symptomatic joint hypermobility. And I'm so grateful to Wendy for having this conversation with me and sharing her knowledge and wisdom with all of you.

And thank you so much for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast. You can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.

If you'd like to dig deeper, you can meet with me one on one and check out the available options on the services page on my website [01:18:00] at hypermobilitymd. com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, and LinkedIn at hypermobilitymd. You can find Human Content, our producing team, at humancontentpods on TikTok and Instagram.

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