Finding the Right PT for You with Wendy Wagner

[00:42] Dr. Linda Bluestein: 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 can be so challenging, and trying to find the path forward without causing flares sometimes 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.
[01:20] We also know that physical therapy is rarely a linear path. Oftentimes we can end up with flares, and 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.
[01:43] 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 is 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.
[02:24] I'm so excited to chat with Wendy Wagner today, and I want to start out by having you describe for me briefly what the typical patient is like that comes to your office for assessment and treatment.

[02:37] Wendy Wagner: Yeah, so a typical patient comes to my office presenting with a lot of different symptoms. It's rarely just one body part, as a typical physical therapist would see. I usually see widespread pain, chronic pain, pain that often doesn't correlate with the radiographic images that they've had done, unstable joints, a history of hypermobility and current hypermobility, experiences with subluxations, a history of using bracing to manage their pain. Pain typically, most commonly, in the head, the neck, the jaw, the wrists, the fingers, the back, SI joint, and ankles. And then with lots of comorbidities. So we have lots of GI dysmotility, lots of migraines, clumsiness, poor proprioception, poor awareness of where their body is in space, pretty poor exercise tolerance for a variety of reasons — usually related to the comorbidities, but also just as a result of deconditioning from chronic pain.
[03:42] Lots of intolerance to all kinds of things, from chemicals to food, sleep dysregulation, which impacts my rehabilitation programming. And lots of fear — I think we'll get into that a little bit more later on — but a lot of fear of movement.

[03:59] Dr. Linda Bluestein: Yeah, definitely. 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 in this shared space — in the biz, exactly. We know that finding the right physical therapist is so important, but it can be really challenging for a lot of people. Have you seen cases where physical therapy has been used incorrectly at times? Are there places where you've seen that it's actually not been beneficial?

[04:31] Wendy Wagner: I'm kind of sad to say yes. More often than not — almost exclusively — my patients will come to me after having been harmed by a previous physical therapist, certainly not intentionally, but they just didn't know what they don't know. They generally don't start low enough, just don't start foundationally enough with the rehabilitation programming. And so a patient will present to a physical therapist with a certain level of pain and will end up self-terminating physical therapy because the physical therapy is not only not helping, but it's actually making them worse.
[05:07] So it's been something I'm pretty passionate about. I'm lecturing everywhere I can, every doctor's office that'll have me. 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 and then into the physical 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'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.

[05:53] Dr. Linda Bluestein: Wow, that's really interesting. It's great that you're doing that outreach work and education work — we're obviously having this conversation right now in order to educate more patients and healthcare professionals. What are the key things that you want — I'm sure there are going to be lots of physicians that listen to this episode, so let's start with that group. Whether they're internists or specialists and they're seeing people that have symptomatic joint hypermobility, what are the top three or so things that you really want them to know?

[06:25] Wendy Wagner: I want them to know that the presentation they're seeing locally is probably more global than they anticipate. So if someone is coming in for knee pain, for instance, it's probably poorly supported feet and hip weakness, not a knee problem. I want them to zoom out a little bit. And I want them to listen to the patients — patients are very good reporters, I find, very reliable reporters — and to not discount the intensity of the pain or the intensity of the dysfunction, how much their functional lives are impacted. I would say those are the big things.

[07:06] Dr. Linda Bluestein: Okay. And how does that message vary? If you had literally a couple of minutes with a group of physical therapy students that are about to graduate, what would be the top things that you would want them to know?

[07:26] Wendy Wagner: The first would be to recognize it. So when I'm teaching the physical therapy students, I want them to be able to recognize it. We go well beyond the Beighton score and we're looking — again, zooming out — at the jaw, at the wrists. And then also that the programming will be very different from what they learn in a traditional orthopedic outpatient physical therapy setting. 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 ten, kind of thing.

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

[08:28] Wendy Wagner: Yeah, I had a patient this morning — really good timing — an older woman who 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 came in and I saw her holding and I could hear her short of breath, almost sounding like a smoker. Her breath pattern was so labored. And so we spent the whole session instead learning how to expand our rib cage and breathe into our lateral and posterior lung cavities. And that was the treatment session, because I can't do anything if she's not breathing, and the poor breathing pattern turns into anxiety, which kind of becomes a vicious cycle. So if I can't even get them relaxed, they're not even able to hear me. So that's how low and slow we start — we start with breathing.

[09:20] Dr. Linda Bluestein: And it sounds like you are very conscientious about not being attached to your agenda for that day. I think that's another big thing — some people have 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. But at the same time, it's unfortunate because that's a missed opportunity for that other physical therapist to become more educated and informed.

[09:24] Wendy Wagner: Yeah.

[10:00] Dr. Linda Bluestein: But at the expense of the patient.

[10:02] Wendy Wagner: For sure. I include as part of my evaluation a conversation or two or three with their local physical therapist or with their local physician. And I find that really helpful because if I find people who are willing to cooperate with me — which we can talk about how you find a good physical therapist — we find somebody who's willing at least to be collaborative and to maybe admit that they don't know everything they'd like to know about this particular diagnosis, we'll have a lot more luck.

[10:29] Dr. Linda Bluestein: So in terms of starting low and going slow, and also not being overly attached to the agenda, what other ways should physical therapy ideally be modified for joint hypermobility? What are the other things that we need to know?

[10:44] Wendy Wagner: So it's all about balancing the body. The body wants to be in homeostasis. And this is kind of PT 101, but it gets missed in this population. The body wants to be in homeostasis, wants to be balanced — front, back, side to side, symmetry of movement, not necessarily strength, but symmetry of function. And our lifestyles obviously take us into this forward flexion, which then results in neck hyperextension and what we call an upper-crossed and lower-crossed posture. PT for this population is a classic upper-crossed position. And what that means is that muscles on one side of the body are tight and the exact opposite side of the body, the muscles are weak. For instance, the pectoralis muscles are really tight and the rhomboids and scapular stabilizers are weak, or the hip flexors are tight and the glutes are weak. So that's where we start.
[11:32] And if we can address the muscles that are too tight 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. I don't do a lot of soft tissue work. I really focus on strengthening the weaker muscles. And then foundationally — we call it core, and I don't know what people get triggered by that word — but your intrinsic skeletal stabilizing muscles really need to learn how to turn on. Most of us, myself included — and I would consider myself to have been a pretty high-level Division I athlete — really didn't have a lot of that until I paid attention to it.
[12:22] So I say to my patients, what is your way out of pain? And I make them repeat this back to me 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. But that's not going to be the solution to their problem. The solution is going to be strengthening that which is weak.
[12:41] So anthropologically, if you want to go that far back, we look at the way rice farmers or toddlers move their bodies, and they move in a much healthier movement pattern than we do as upright beings. And in a patient with generalized joint hypermobility whose intrinsic stabilizers — ligaments and tendons — are weak, and who is relying on skeletal muscles that then puddle because gravity takes over, we have learned very poor movement patterns. The goal of physical therapy would be to identify what's tight, to strengthen what's weak, and to teach healthier movement patterns. And then it goes beyond that — to learn how to move safely with good body mechanics and learn how to set up your home, work, and recreational environments so that you don't injure yourself.

[13:31] Dr. Linda Bluestein: Okay. So there are two things I want to follow up on there. One is things being tight, because I think a lot of people can kind of understand how the muscles are trying to compensate for that joint instability. But I think that can make the picture confusing sometimes. It is true that a weak muscle can be a tight muscle, correct?

[13:52] Wendy Wagner: For sure. Yeah. A tight muscle might be spasming. The spasm of the muscle is not going to allow it to lengthen and to contract with the regularity that we need it to be functional. So yes, there can be tight muscles that are very, very weak. Like your pecs — those are muscles that are in spasm and really tight. But if I asked you to bench press a lot of weight, you couldn't do it.

[14:26] Dr. Linda Bluestein: Okay. And in terms of the deep stabilizers, the intrinsic deep stabilizers that you were talking about, is that something that can be true even of people who are doing sports and things like that? You mentioned that you did Division I athletics. And of course there are people where it's really very clear that they have generalized weakness, so you know they're going to have weakness in those deep stabilizers. But is that true even of somebody who might look like they would not have that problem?

[14:56] Wendy Wagner: Yeah, for sure. I'll use the example of gymnasts who are very strong but have a really anteriorly tipped pelvis or a really arched back, who might be able to generate power in that position, but who could possibly generate more power if they were in a more ideal skeletal alignment. I was a swimmer, and it's probably not a coincidence that I was a swimmer. It served my body well. But as we strengthen up our core — I use the example of a fishing rod. If you had a fishing rod with a lure on the end and you were trying to hit a target, if your fishing rod is flimsy, your odds of being accurate out at the end are 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 where you drop the lure. That's my example of how important it is to have good control of our intrinsic stabilizers. It's kind of good old-fashioned Pilates, almost. As I'm trying to explain it, it's as old as Joseph Pilates teaching back in the day to strengthen your power.

[16:18] Dr. Linda Bluestein: Yeah, I definitely recommend that people do Pilates quite often, because I do think that's a good fit for the challenges that people with joint hypermobility face.

[16:28] Wendy Wagner: Certainly with modifications. If I were to send them on a reformer, I would give them 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 an extended wrist. And I don't want them planking too soon. But the support of a Pilates reformer is fantastic for our patients.

[16:49] Dr. Linda Bluestein: So in terms of how people can find a physical therapist who is knowledgeable enough about joint hypermobility and/or willing to learn — because you also see situations where people say that they're EDS trained or they're certified, and it's very, very challenging. I feel like as awareness has grown, it's almost gotten harder than it was before because people are slapping things on their website. 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 kinds of things do you tell people to look for?

[17:28] Wendy Wagner: I ask them to look for — and they'll often come to me with a history with a physical therapist, so I can ask targeted questions about that particular person. Or if you're looking for a physical therapist in your community, you just have to find somebody who's willing to be collaborative. Who's willing to work together — for them to tell me what they know about the patient, what strengths they're observing clinically, but then for me to say, have you thought about this? So really somebody who's willing to be collaborative. And almost — I hate to say it — some of the younger therapists are more open to saying, I don't know what I don't know.
[18:20] The other tip I would say is, if you can find a practice where you're not being seen every 10 minutes or getting passed off to an aide. Some of the bigger physical therapy practices — their business model just doesn't allow for the time that our patients need. I think other patients may be able to be given a couple of exercises and go do them in the corner of the gym. But somebody with hypermobility just can't do that, because they're master compensators. They need a lot more attention, at least foundationally, as they're learning the beginning exercises. So you need to find a PT practice that has a different business model that can allow for more time.

[19:02] Dr. Linda Bluestein: Yeah. I suggest to people when they're looking for a physical therapist that they have a list of about five questions to ask, and that's definitely one of them. How are the sessions structured? And when they go in for sessions, are they seeing the same person every time? Because I know for me personally, I really want to always see the same person. Unless obviously things happen — a person could be ill or something like that — but otherwise, you should be scheduled with the same person every time.

[19:33] Wendy Wagner: I have a handout I created — this is just out of my frustration. I just banged out a handout called Take This to Your PT. And I have a book up here in my head and that's the name of the book. To have something in writing if I'm not able to talk to that person directly. It basically gives some guidance on assessment — here are some things you can look for — and then as you're planning your treatment sessions, here are some things to consider. So just gently making some suggestions on assessment, treatment planning, and structuring the treatment sessions too.
[20:05] A lot of our patients have orthostatic intolerance, and a traditional physical therapy session will have them up, down, and all around. So that's really it — just being open to learning, to participating in some of the EDS ECHO programming that's available to them. And there are some good books out there. Our colleagues just wrote a great book called Taming the Zebra. It's a very comprehensive textbook on learning about the physical therapy angle of patients with connective tissue disorders, and there are others out there.

[20:40] Dr. Linda Bluestein: Yeah, I interviewed Patty and Heather about that book — I think that was episode 98. I could be wrong about that, but we'll try to look it up so we can link the correct episode in the show notes. So yes, there are lots of great resources out there, and it's so important to have that good fit. I tell people all the time, if they're looking for a counselor or a psychologist, it's 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 — it's a good idea to go in with an open mind of, this might be the right person, but it also might not be, so I'm going to see how they respond and what they think of my situation. And 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?

[21:37] Wendy Wagner: It is a big problem, depending on their insurance. Medicare is really difficult about that. So yeah, that is a big challenge.

[21:44] Dr. Linda Bluestein: Yeah, I really think that the whole insurance model is so challenging. With physical therapy, you have to show a certain amount of progress, but not too much progress. And if you go in for a knee problem like you were describing earlier, you're not really supposed to be addressing other parts of the body. Is that correct?

[22:06] Wendy Wagner: Yeah, and that's obviously very challenging. It's rare that I find a knee problem that has much to do with the knee.

[22:17] Dr. Linda Bluestein: Okay. In terms of how we can recondition the body without causing a flare — we know flares are very common — how do you go about reconditioning the body without that flare problem, and how long does that often take?

[22:33] Wendy Wagner: So I put a lot of responsibility in the hands of the patient. Whether or not you're going to flare — you have all that information inside of your body, and you need to really tune in and check in to know how much activity is going to cause you a flare. And so if you lay down on my table and I say, do 10 bridges, and you know that bridging is 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. I really need you to take responsibility for being a good advocate. And that's a challenge in our medical system in general, right? The fear patients have of speaking up.
[23:24] So the success of managing flares, I put as much in the lap of the patients as I do the treatment planner. And that is even more challenging when we recognize that patients with chronic pain are often very dissociative of their pain. They tend to go offline almost and not be checking in with their real lived experience because it's painful. So I teach a lot in my sessions about getting back into the body with mindfulness, with grounding, with breathwork, because — as much as they resist that, since it can be very uncomfortable to check in with their pain — it is the only way that we will prevent a flare: if we're sensitive to what we know.
[24:10] I always say there is a threshold, there is a ceiling, and I draw a line. I'm a very visual person. I say you can bounce up and down below that line, but as soon as you pass your threshold of pain, you can anticipate a flare. So you need to know where that line is, and that line changes on a given day based on where you're at with your mast cell support, your POTS support, your nutrition, your hydration, your rest, the time of season, whether you've been traveling. 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 also part of choosing the physical therapist, right? Is it somebody that you feel comfortable speaking up to? Because I think that's a really important part of the process.

[25:03] Dr. Linda Bluestein: Yeah, and that's really hard, especially early on in the relationship. Whether or not it's a perceived thing, or more a true reality that an objective observer would make note of, I feel like a lot of people would be afraid to speak up — myself included — because we don't want the physical therapist to think that we are lazy. I mean, I've heard people say they've been called lazy, or the physical therapist did not take that information well from the patient. It's tricky. I think if you've been working with a physical therapist for some time and they know you and respect that you know your body, it's a little easier. But early on in the relationship, do you have any suggestions for how people can navigate that without coming across as not trying hard enough?

[26:00] Wendy Wagner: Yeah, it just requires a lot of confidence on the patient's part — confidence that what they're experiencing is true and is real. I think they doubt themselves. They will lay on that table — the patient I was talking about this morning, I asked her to do something and she grimaced. I said, is that bothering you? And she said, it is, but it's fine. They even doubt themselves as to whether they're even experiencing the pain we're observing.
[26:32] So you're right — building the relationship with the physical therapist is important, but it starts with the empowerment of the patient. That's where the patient education comes in. If they believe that they have an anatomical defect — a shallow socket, say, of the acetabulum of their shoulder — then they're more likely to report shoulder instability if they believe they have that anatomical defect. So the more confident they are, it will just be a better relationship if they can be honest. And then, like you said, it's trust building — the therapist trusts that the patient is a good reporter too. Yeah, it's really, really hard.

[27:17] Dr. Linda Bluestein: It is. It's funny because as you were saying this, I was thinking about a time — two sessions ago, actually — when I was working with my physical therapist. She wanted me to do an external rotation exercise with a band. I've had frozen shoulder, bilateral frozen shoulder, and we've been working through that for quite some time. It definitely goes up and down, sometimes more problematic than others. But she wanted me to do this external band rotation exercise, and I knew at the time that it was probably more repetitions, more sets, than I should do. 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. And after the session was over that night, I was really, really sore — probably not a terrible flare, but it was beyond that amount of okay soreness. So the speaking up piece is just really challenging for all of us.

[28:21] Wendy Wagner: It is really challenging, and it's a learning experience for both the patient and the therapist. This patient I had this morning — 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, yes. 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, I'm okay with that. And she said, oh, really? So yeah, it is really hard.

[28:50] Dr. Linda Bluestein: That's a perfect lead-in to kinesiophobia. When I first learned about kinesiophobia, I was writing my first article about EDS — this was in 2016, I was writing about pain management in 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 kinesiophobia specifically?

[29:27] Wendy Wagner: The programming that will work best for this population often is about learning to find the muscles that are tight, learning to relax those muscles as much as you can, learning to move in a range that is not going to cause pain before we move into the range that may — that may challenge your tissues. So we start patients with extreme kinesiophobia by getting them to just trust that their body can move at all. I had another patient this morning whose 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. I didn't tell her this at the time, but I said, I need you to trust me and I need you to trust your body. So I need a couple of sessions like this of not overworking or challenging your tissues so that you're ready to move to the next step. Those are the baby steps.

[30:25] Dr. Linda Bluestein: So when I was in physical therapy after my surgery, my physical therapist literally just had me lay prone and flex and extend, flex and extend — no weights on my ankle — just to start getting my confidence back. It was a very small range of motion. And eventually I was able to do weights, and now I can hike and do all kinds of things. So definitely building that confidence, starting low and going slow.

[30:57] Wendy Wagner: I tell patients about some of my good past stories 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. And if you tell somebody who can only do three breaths that they're going to be on a rowing machine, they won't believe you. I'll tell them, I can tell you about — these are not real names — Mary and Susie and Katie. They started with three breaths. I'm not saying you'll get there. We talk often about your functional goals. Is your functional goal to be on a rowing machine, or is it to be able to pick up your grandchild?
[31:34] The trust building is so important. And I'll be honest — is my gift in the social work component of physical therapy? Not really. That's not really where my gifts lie, but it's such an important part of my job. So I'm learning to appreciate some of those nuances of being a good physical therapist too.

[31:58] Dr. Linda Bluestein: Right. 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. I want to make sure that we start talking about upper cervical spine problems because I know that's something that you specialize in. Can you describe for us the kinds of problems you see most commonly in the upper cervical spine and how you address those?

[32:26] Wendy Wagner: Sure. Patients don't often come into my office saying, "I think I have upper cervical spine instability." They come in complaining of headaches, neck pain, and some diffuse neurological pain — confusion, nausea, brain fog, difficulty with concentration. And those aren't even their primary complaints; those all come out in my intake questionnaire. I ask about them because they may lead me back to focus there. So inevitably — I should write a research paper on this — a very high percentage of my patients, more than half, I will ultimately identify as having upper cervical spine instability.
[33:12] What that is: we have vertebrae that are protecting the spinal cord, and at the top of the uppermost vertebrae is your skull. So you've got your skull and you have the bony protections of your vertebrae, and what those structures are protecting are the soft tissue structures — your spinal cord, and then your brain. At the junction between your skull and your first cervical vertebra, or between your first and second cervical vertebrae, there are kind of weak spots in the chain. And this is one of what I call — I don't know if I'm allowed to say this on a podcast — one of God's design challenges. The knee only goes one direction. And same thing with the head and the neck — the head is an 11-pound bowling ball sitting on a stick. I call it the pumpkin on the stick. It's just not well designed biomechanically to support it. Or maybe it was, anthropologically, back in the days when we were moving in healthier movement patterns.
[34:17] But the neck has become a weak spot, probably exacerbated by the onset of laptop computers specifically — not just desktops, but laptops — because we're looking down more. And then certainly the cell phone. So yeah, it's just a weak spot.

[34:35] Dr. Linda Bluestein: Sure, sure. 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 neck and cape area. So we'll be right back.

[36:08] Dr. Linda Bluestein: Okay, we're back with Wendy. 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 — some people have very mild symptoms, and we have people that are in a much worse place. So how are you assessing that in more detail and deciding how to proceed?

[36:27] Wendy Wagner: So this is kind of one of my passion projects. I personally have experienced it — that's kind of how we get taken down these roads. I personally have a significant amount of cervical instability that has caused a lifetime of disabling headaches. And so when I chose to focus in this area, I had a really good grasp of what it felt like and then of the symptoms that it produced.
[36:58] The symptoms it tends to produce first, we talked about, are headaches and neck pain. But where the instability is in that upper cervical spine, the soft tissue structure being protected is your brainstem. And off of your brainstem come your cranial nerves, one of which being your vagus nerve. I personally have a passion for trying to prove to doctors and patients that instability in that upper cervical spine could be putting traction on the brainstem and really having an impact on the health and viability of that vagus nerve.
[37:40] Dr. Fraser Henderson and I have done some really nice work trying to come up with a framework for when we do imaging — what measurements on an upright cervical spine MRI would put us down the lane of suspecting cervical instability. There's nothing we can measure and definitively say, yes, you have cervical instability, but there are some anatomical landmarks we can put in relationship to each other and suspect with a high degree of suspicion that you have underlying cervical instability — but only when correlated with clinical symptoms. I'll have some patients 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 is experiencing.
[38:31] With some of my colleagues, we published an article last year just to start the conversation about exactly the question you asked, Linda: when a physical therapist is presented with a patient with what we suspect is upper cervical instability, what do we do about it? The first step is to kind of grade it — how severe do we think the presentation is? We identified mild, moderate, and severe groups based primarily on what their clinical symptoms are, and then how you treat them would be in reference to how severe we think their symptoms are.
On one hand, you have people with mild instability that just experience headaches. On the other hand, you have people with clinical symptoms that present as inability to stay awake, nausea and vomiting, and ataxic wobbly gait. And then we have everything in between. We have to identify how severe we suspect the presentation is and then guide treatment accordingly. In some cases, we're not even treating these patients — we're directing them to a neurosurgeon for assessment because we think putting hands on them or asking them to do something they shouldn't may further risk injury. So it's a puzzle. I like the puzzle of it. Yeah, it's fun.

[40:02] Dr. Linda Bluestein: And every patient is so different, so it's not like you're doing the same thing every day.

[40:06] Wendy Wagner: No.

[40:07] Dr. Linda Bluestein: Although there are obviously a lot of similarities. And I did interview Leslie Russek about that paper — I wish I could remember the episode number off the top of my head; it was around episode 95, I think. But we'll list that in the show notes as well, because that was also a great conversation. And it's wonderful that you were a co-author on that paper. I know you all really collaborated in terms of your clinical experiences, because trying to design the perfect research study would be very difficult. So this was like an expert consensus — is that right?

[40:41] Wendy Wagner: It's just the start. 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 we take the mild group and we do this, this, or this with them? What is their outcome like? So it's just the beginning of the conversation.

[40:57] Dr. Linda Bluestein: And when I asked for questions for you from my listeners and followers, some people were asking about cervical spondylosis — how do they know when it's just normal aging? Spondylosis refers to degenerative changes in the cervical spine, and we know that's really, really common. I think I saw a statistic recently that 90% of people my age and older are going to have cervical spondylosis. So at what point does pain, stiffness, or noises become something to worry about? 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.

[41:43] Wendy Wagner: It's really when we see presentation of neurological symptoms that are more global. So if you have some numbness and tingling in your hands, I would suspect a unilateral cervical disc herniation if it's one hand or the other. If you have global neurological symptoms — like I said, concentration, cognition, nausea, vomiting, balance issues — then I worry more about traction on the brainstem or compression of the brainstem. 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, traction, or compression. Any of that can happen if the bones are moving around more than they should.

[42:35] Dr. Linda Bluestein: Sure. So if you do have, say, symptoms in the fourth and fifth finger, that could be entrapment of the ulnar nerve — it could be anywhere along the path that the nerves travel from the brain out to the extremities and back. But you're talking about really more central symptoms — visual, auditory, swallowing difficulties, balance — those kinds of things being more worrisome.

[43:04] Wendy Wagner: Yeah. And we can test some reflexes — some central reflexes, the Hoffman's reflex, a gag reflex, Babinski, some of the central ones. Yes, correct. That's exactly what I was speaking of — more central symptoms.

[43:18] Dr. Linda Bluestein: Okay. In terms of treating flares of neck pain, do you have any thoughts about that?

[43:25] Wendy Wagner: Yeah. The flare of neck pain is always two-sided. One is to prevent it from happening in the first place, and then what do you do with it once you have it? Preventing it in the first place is your alignment, your body position, just how you carry yourself. And I really dig into a patient's day. I'll say, when you get tired and you sit down, where are you? They say, I'm in my family room. No — where are you sitting? I'm on my couch. What does your couch look like? It's soft. Does it have a back? How high is the headrest? Can you support your head? Is there a recliner? So I'll dig down into figuring out how to prevent the neck pain in the first place.
Usually it's from a forward head position for extended periods of time. They'll say, oh, I combed my cat, or I cleaned my bathtub. Or they're often triggered by being a passenger in a car — 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 to turn on. When you're a passenger, you're almost — I hate to use the word — almost a victim of the driver, in that you're not able to respond to limit the excess head movement.
[44:42] So we problem-solve together on how to limit the opportunity for the flare to happen in the first place. That's often with neck bracing, or choosing different movement patterns, or supportive rest positions, being very mindful of your body mechanics. Maybe using a bite block if your TMJ is causing some of the neck pain too. Heat or ice if you've already gotten into a flare. All those same preventive strategies would work too if you're in a flare.
[45:16] We do use a neck brace, and this is kind of a controversial topic in the PT world. As we were trained in PT school, we were told to rarely brace patients unless they were recovering from surgery, because we don't want to decompensate the muscles that are intended to do the job. And in a patient with an intact primary stabilizing system, I would say that would be true. But in a patient with connective tissue that we know is faulty, and whose intrinsic stabilizers — ligaments and tendons — aren't doing their job, sometimes we need to give a little exoskeleton support. And my guidance for that is typically to use it in a flare, temporarily, or to prevent or limit what you know may cause you a flare.

[45:59] Dr. Linda Bluestein: Okay. So first of all, I didn't know cats needed to be brushed.

Wendy Wagner: Right?

[46:01] Dr. Linda Bluestein: I was like, what? And then the second thing I thought of as you were saying that was the last — like, really bad flare 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 a passenger and he was the driver. Driving to pick up the car was absolutely horrible. And then fortunately I was able to turn my body enough to safely drive home, and that was better. Driving home was better than driving out. So that's really interesting.

[46:44] Wendy Wagner: Yeah. I'll often have patients put a brace on when they're a passenger in a car — a hard cervical brace, if they're really symptomatic or in a flare, or trying to prevent a flare before an important event like a wedding. I'll say, throw your hard cervical collar on when you clean the bathtub; throw your hard cervical collar on if you're a passenger in a car. You can't do that when you're driving — we need you to have your neck range of motion when you're driving, so that's not safe. But you can put a soft collar on when you're driving. And then I have all kinds of ergonomic pillows and things to put in your car to try to give you a more friendly driving situation.
[47:21] Yeah, being a passenger in a car is hard. I almost insist on driving all the time when I'm with my husband, not because I'm a better driver, but because it will just limit my likelihood of flaring.

[47:35] Dr. Linda Bluestein: Interesting. And in terms of soft versus hard cervical collars, I've heard some people say that soft cervical collars are kind of almost like a neck warmer that doesn't really do much. You have to be careful with any kind of rigid bracing, especially in terms of duration, and using it under very specific situations. How do you help people choose a brace? And do you refer them somewhere for that, or what do you do?

[48:12] Wendy Wagner: I have the three that I use most often in my clinic, so I'll have them come in and try them on. I have the Aspen Vista. I have the Miami J, which is a little bit less supportive but often more comfortable for people with longer necks. And then I have something called — I can't pronounce the company; I think it's Thwasny — it's a rigid brace, but it has the ability to raise and lower the chin rest, which gives your jaw kind of a break. Those rigid braces are often pretty hard on your jaw, which is probably already unstable. So we'll try them on and see what feels best.
[48:49] I even have something that's really flimsy — it's a little metal support that just braces on your sternum, that doesn't really limit side-to-side movement, but helps with that forward-back range, which tends to be the most provocative — forward head flexion and neck extension. And that's another option we'll try in the clinic. And then I have a whole bin of soft collars that we'll try. Like you said, some can be neck warmers. You have to find the right amount of support. If you can put a soft collar on and just relax into it, then it's a good collar for you. If you can't relax into it, then it's not doing anything for you.
Actually, 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 say that with other braces too, because the patients know their body almost better than we do. I'll say, pick out and order three that you think look most helpful and try them.

[49:57] Dr. Linda Bluestein: Okay. And then what about the instructions you give for hard cervical collars? Because that's definitely more significant — like only for 20 minutes at a time, or what about sleeping in it, not sleeping in it, that kind of thing?

[50:11] Wendy Wagner: Yeah. If you talk to a neurosurgeon, you'll get different answers to this question. I typically say not more than 15 minutes a day if you can help it. If you have to be up moving around, doing some activity — feeding yourself, feeding your children, doing something that you need the hard cervical collar for — we also use it diagnostically, interestingly enough.
[50:37] I'll have patients put it on for a couple of days. Honestly, the prescription is supposed to be 24/7 for a couple of days. Very few people can actually sleep comfortably in it. But for the majority of the time that you're awake, if you could be wearing a hard cervical collar — if your symptoms improve, and by symptoms I mean less so I'm interested in whether your head and neck pain get better, and more interested in whether your vision is better, whether the ringing in your ears goes away, whether you can swallow with less of a lump in your throat, whether you're more alert, whether your vertigo and dizziness go away — some of these diffuse neurological symptoms, if those improve with cervical spine stabilization with the hard cervical collar, then that's another indicator that we've got instability there.
[51:28] And then there's imaging too, right? We can do upright loaded flexion-extension MRIs or dynamic motion X-rays. There are all kinds of imaging we can do to try to further substantiate how likely we think upper cervical spine instability is contributing to your overall symptom profile. I'll argue that some of my dysautonomia patients may not have centrally mediated dysautonomia at all — they may have so much mechanical instability right near their vagus nerve that their dysautonomia is coming from mechanical instability.

[52:05] Dr. Linda Bluestein: And if you were — I'm going to put you on the spot here — of people that you see that you feel have cervical instability, excluding what I hope is a very, very small percentage where you say, no, you need to see a neurosurgeon right away — of the rest, what percentage do you think are able to make significant gains with physical therapy and some bracing here and there, versus the number that end up having surgery or maybe prolotherapy or some other regenerative medicine technique? What percentage are able to improve their symptoms dramatically with physical therapy alone?

[52:54] Wendy Wagner: I will say — just before I even answer the question — more than half of my patients I refer for a neurosurgical consult. So most of the people who come my way are pretty profoundly impacted and are in my moderate to severe presentation for instability.
[53:17] And then how many of them get better? Most. And this is also a messy question because, for my patients who are committed, who have the time and the resources to follow a program — start low, go slow — the patients that are able to stay with the program for a variety of reasons, who have the time, the financial resources to pay somebody to guide their care, and have the intrinsic motivation to work the program — most will get better. And even if I sent them to a neurosurgeon who said, I think they're a potential neurosurgery candidate, most of those patients will still get sent back to me with the instruction: I won't consider surgery until you've gone through a course of dedicated cervical spine strengthening. And there just are not a lot of us out there that understand this. A neurosurgeon will say, go back and do some PT, but they may go back and do the wrong PT.
[54:26] So I would say I can help most of the patients who come into my office, if they are able to commit to a physical therapy program.

[54:41] Dr. Linda Bluestein: And yes, I definitely have had a number of patients that I've referred to neurosurgeons, and the neurosurgeon has evaluated the imaging and said exactly what you just said — you need to do six months of dedicated physical therapy before I would consider doing surgery. Which I'm glad about, because we know these are really big surgeries and we don't want to venture into that territory if it's not really necessary.

[55:09] Wendy Wagner: Yeah. And what I'll tell patients is that there are joints that are hard to strengthen — not every physical therapist would agree with me, but there's not a lot you can do to strengthen a wrist or an ankle. There aren't large muscles crossing those joints. You can certainly strengthen tendons with loading and all that. But a neck 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. 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. And I've got pictures all over my office to try to prove to patients through patient education that you've got layers and layers of muscles in there that we can strengthen with very targeted exercise.
[55:55] Yeah, it's definitely — and even if I can't get you all the way, we'll get you to a place where you're maybe a little bit more functional. There is a very small percentage of my patients — less than 5% — that end up having actual spine surgery. But I'll also say maybe more than half don't follow through on the programming and end up back at the neurosurgeon saying, "Fix me." So it's—

[56:27] Dr. Linda Bluestein: Yeah. It's hard.

[56:27] Wendy Wagner: It's really hard.

[56:31] Dr. Linda Bluestein: No, that's really, really hard. Speaking of neck muscles, I feel like you've been anticipating my next question every time.

[56:39] Wendy Wagner: It's great.

[56:39] Dr. Linda Bluestein: So I've noticed when I examine people, the sternocleidomastoid — which, for those watching on YouTube, they can see me pointing to the muscle right here that goes from your sternum up to basically the angle of your jaw — that muscle and the scalenes, which are buried kind of underneath there, I've noticed that they just have such high tone in my patients. And so many of them have coat hanger pain — basically imagine a coat hanger shape, from the back of your head out through your shoulders. A lot of people have coat hanger pain and this high tone situation. How do you address that?

[57:21] Wendy Wagner: My way out of pain is strengthening. So a typical presentation of somebody with really spasming sternocleidomastoid muscles or scalenes — 95% of my patients will present with spasming, very overactive SCMs and scalenes. I say to them: you'll go to your physical therapist or your massage therapist and they'll work those muscles to relax or release them, but not until the body trusts that the right muscles are working will those muscles ultimately relax. And the same is true with coat hanger pain.
[58:01] So if you're in a posture where your shoulders are slumped way forward and you've got these muscles stretching out across 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, yeah, they're going to be irritable and talk to you. I will recommend soft tissue work, but always with the caveat of: my way out of pain is strengthening. And it'll be strengthening the right muscles. Certainly heat, gentle movement, some soft tissue work, some bracing if we need to get those muscles to stand down, so to speak. They're overactive because they think they're being very helpful, but we have to convince them that they're not needed here today — that they can stand down.

[59:00] Dr. Linda Bluestein: And posture is such a big part of that, right? You talked about the pumpkin on top of the stick. And as we go into that forward posture, we've made the head a lot heavier and we're putting a lot more strain on the neck.

[59:12] Wendy Wagner: Yeah, that 11-pound head — for every two inches it moves off of midline, it doubles in weight. So your 11-pound head moves forward two inches, it becomes a 22-pound head; you move it four inches, it becomes a 44-pound head. Theoretically, in proportion to the rest of your body, a 44-pound head. We all know it, right? I have this conversation with patients and they all sit up straight — and so do I. So we all know it, but it is PT 101 for a reason, because that will serve them best if they can get themselves in alignment.
[59:50] And I say supportive alignment is okay too. You can be in a recliner and be in alignment as opposed to craning your neck up against the headboard of your bed. There are ways where you don't have to maintain alignment against free gravity. We have exoskeletons, we have body braces, we have compression garments we can wear to help us with that. And those can help not just when we have to, but also to teach our body where it's supposed to be. We talked about the dissociation of pain — we also have really poor proprioception, really poor body awareness. And those exoskeleton compression garments can help with that too.

[1:00:34] Dr. Linda Bluestein: No, no, that's okay. And I'm curious to ask you about something. So I've been dealing with bilateral frozen shoulder, as I mentioned, and also cervical spine things forever, and TMD — so it's always great to get to talk about some of these things that a lot of us struggle with. One thing I've noticed, which is really interesting to me: if I have a lazier day and I end up watching TV for a longer period of time, even if my head is supported, I often will then have more of a flare of pain. Whereas if I'm moving around more, I actually have less pain. Like the other day, I went on a hike and before I went, I was having a lot of pain in my neck. I was in a hotel room, laying on the floor, trying to figure out what I could do — sometimes I'll use a tennis ball with my upper traps and stuff like that, but I couldn't do any of that. So I kind of laid on the floor to try to get my musculature to relax. But then after I went on the hike, I felt fine on the hike and I felt much better afterwards. Do you have any thoughts about that?

[1:01:48] Wendy Wagner: Well, motion is lotion, right? That's one of our many kitschy phrases. Lubricating the joints, teaching the body that the body was built to move — we weren't meant to sit. You mentioned a supportive rest position and you got sore. We often need to fidget — constantly moving our position. If you're statically in one position, we weren't meant to be awake and still. Going back anthropologically, for hundreds of thousands of years we were always in motion. So it makes sense that being static for an extended period of time wouldn't make you feel good, even if you're supported.
[1:02:37] So I teach all my patients this pacing concept — these little micro-breaks throughout the day. And part of that micro-break for some patients is to stop moving and rest. For other patients, I say you've got to get up and move. So it depends on the patient.

[1:02:57] Dr. Linda Bluestein: Sure, sure. So in terms of what you mentioned about release and doing some soft tissue work — are there certain things that people can do for themselves that you find beneficial?

[1:03:10] Wendy Wagner: Specifically for neck pain or for all-over body pain?

[1:03:11] Dr. Linda Bluestein: Neck, cape — let's generally stick to that area.

[1:03:19] Wendy Wagner: Yeah. Being careful about the way that you move and how supportive it is, like we've already talked about. You mentioned the tennis ball — you can do some soft tissue release work. There's the Theracane, where you can get in there and do some trigger point release on the neck muscles. People ask me heat or ice and I say whatever your body thinks it wants right now, because we can heat it to relax it or we can ice it to stop the swelling.
[1:04:02] I call it — I have bins of braces. I have a bin of wrist braces. I have a bin of ankle braces. I have a bin of neck braces.

[1:04:09] Dr. Linda Bluestein: Me too.

[1:04:10] Wendy Wagner: And those are my personal braces — we're not even talking about professional braces. So yeah, just being careful with where you're at on that likelihood of flaring, that threshold. Where are you at? How much activity do you think you can tolerate? If you're weeding your garden all day, you probably shouldn't be making a big meal. So just trying to figure out how to pace yourself.

[1:04:38] Dr. Linda Bluestein: Sure, sure. And what about sleep? 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 I've had to vary the pillow under my head depending on where I'm at with my neck. Do you have any particular tips for sleeping positions?

[1:04:57] Wendy Wagner: The pillow that goes under your head is critically important. I say to people, I've got four or five pillows in my house and none of them seem to work. I say, then buy six, seven, eight, until you find the right pillow. Keep looking, because it's just critical. The definition of a good pillow is one that, if somebody were to take a picture of you, your body is in decent skeletal alignment — one that supports your neck with some softness so that you're not just laying on the posterior part of your head, and that the whole curve of your neck is well supported in all positions that you sleep in.
[1:05:38] Certainly if you've got neck issues, nobody should be sleeping on their belly. I'm a belly sleeper, so I'll call it three-quarters prone — kind of on my side, but kind of on my stomach. Pillows are supporting me everywhere else. And probably a pillow between your knees — like you said, I do the same thing. I hug one and I'll often put one behind my back too, if I'm not too hot.

[1:06:24] Dr. Linda Bluestein: Yeah, that's funny because I literally just had this conversation with my physical therapist recently, and I ended up switching from a much more expensive pillow to an older pillow I had in my house. And the older pillow actually worked a lot better. So like you said, it requires a lot of trial and error, and I just say don't give up.

[1:06:52] Wendy Wagner: The pillow is critical. Don't give up.

[1:06:57] Dr. Linda Bluestein: What about gel pillows? Because I had a physical therapist once who said no gel pillow because it didn't have enough give.

[1:07:27] Wendy Wagner: I think they're fine. Again, if it supports your neck and you wake up in less pain — patients will tell me once they find the right pillow, I'm finally waking up not in pain. It 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 fine. Bamboo is fine. An inexpensive pillow is fine if it works. Just keep looking for the right pillow.

[1:07:38] Dr. Linda Bluestein: Sure, sure. The last question I wanted to ask before we get to the hack — you know, it's so challenging with the siloed medical system that we have. Do you have any tips for people that are really struggling with that? Maybe they go to a neurologist who's willing to deal with their neurologic issues but can't 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 a separate visit for each one. Do you have any tips?

[1:08:16] Wendy Wagner: A couple. If you can find a good primary care doctor — even better, if you can afford it, a good concierge medicine doctor — so you have ready access to them, because you're going to have a lot of questions if you've got a lot of body systems that are affected.
[1:08:34] Go on social media and post that question in your area — who do people like? These social media groups are really effective at helping patients network and find physicians. You have to take it with a grain of salt; sometimes I'll see perfectly good physicians getting panned on social media, and vice versa. But I think that's a good place to start. Certainly if you have friends who've had good experiences with doctors.
[1:09:08] I did a survey with patients with EDS in the Chicagoland area — we were able to reach about 2,400 people and got about 350 responses — asking them: if a center of excellence were to present itself in Chicago magically, what parts of it would you use, and for what reasons? We got really amazing data back. 94% said that their symptoms negatively affect their ability to work, go to school, and take care of their family. We got a whole incidence of the different comorbidities, so we can validate to patients that they're not crazy, that their multiple body systems are affected.
Some of that also answers your question about how to find good providers in a siloed medical system — just telling 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. So getting them to persevere and say, okay, you're right, I need a good cardiologist — well, but you might also need a good neurologist, a good gynecologist, and so on.
We also got results that 11% of the patients surveyed said they spent $20,000 a year or more out of pocket on health-related expenses. 95% said they had been medically gaslit. Anyway, we just got really interesting data basically validating the need for more collaborative care and demonstrating that our siloed medical system obviously doesn't work for this population. How we come up with a better medical model for these patients, I'm just not sure. The jury's still out. All of us experts are still trying to figure out how to support these patients best. You're doing great work with this podcast, even just to get people to believe themselves so they can then advocate for themselves in the medical system.

[1:11:26] Dr. Linda Bluestein: Yeah, and I have lots of patients who are seeing a lot of different specialists, and they'll say, "Well, you're my quarterback — 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 often responsible for getting the records to the different specialists. And I think the patients who do the best are often the ones who are fortunate enough to be able to afford a higher level of care — they're able to have more support in terms of keeping track of their records, having people go with them to appointments, taking notes, and things like that. So there's a lot of social aspects to this that are also so challenging.

[1:12:11] Wendy Wagner: For sure. And I preach the one-pager all the time — my patients are sick of hearing it. But I'll say, could you come up with a one-pager? I'm going 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 one-pagers. In fact, patients will pay me to sit with them while they do their one-pager. That's how critically important I think it is that they get that right so they get the most out of that doctor's appointment.
[1:12:37] And like you said, I'm glad you mentioned bringing other people with you to your appointments. I just think that's so important, because they go in thinking they're going to be gaslit, so they're going to be gaslit. A lot of times they turn off, they dissociate from their pain. Having another person there with them is really, really important. I'm glad you brought that up.

[1:12:57] Dr. Linda Bluestein: And another pair of ears and everything.

[1:12:59] Wendy Wagner: Yeah.

[1:13:00] Dr. Linda Bluestein: All right. I always like to end every episode with a hypermobility hack or two or whatever we have time for. Do you have a hypermobility hack to share with us?

[1:13:11] Wendy Wagner: I sort of mentioned it — one of my hacks is pacing. It sounds so trivial and sounds like something we should already know how to do, but I really have to teach it. And I use myself as an example. I'll say to a patient: before you walked in the door to the clinic, if I were furiously studying your notes and then went straight into this 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 deep breathing and supportive relaxed positions, and then I get up and I do your two-hour appointment. And when you walk out the door, I can't immediately sit down and write your notes — I have to do a little rest break myself. I say, I'm one of you, and I have to do the pacing to get through my day. That's what I've found to be really helpful.
[1:14:32] And then like we talked about, finding all the right supports and braces to do the activities that you want to do. I've found my favorite wrist brace and my favorite tape, and I pack them on my trips. I've got almost half a suitcase for my bracing. So yeah.

[1:14:52] Dr. Linda Bluestein: Sure, sure. And so long as we're not using completely rigid braces all day, the whole idea of muscle atrophy from disuse is something that we probably don't need to worry about too much. The idea with bracing and tape is to improve alignment and make it so that we actually can move more and move better because we have that support.

[1:15:17] Wendy Wagner: Yeah. And this is messy because I do have patients who abuse — quote-unquote abuse — the brace and will use it too much, and then we do worry about that. But the majority of patients honestly just need permission to use the brace. And so I'm there to give them that permission.

[1:15:32] Dr. Linda Bluestein: So even if it's not a rigid brace, you feel like you can get into a disuse type of situation if you're overusing the brace?

[1:15:44] Wendy Wagner: I would say it depends on the body part. A wrist — not really. If you need to wear a wrist brace to drive, to type, and to lift that heavy pot off the stove, I'm going to say use the wrist brace for a good part of your functional day. But do I want you in a knee brace all day? Definitely not. So it depends on the body part, and it depends on why you're using the brace. Are you using it just because you think it's going to fix your owie, so to speak? Then that's not the right reason. But if you're using it because you want to be in good alignment and minimize the chance of a flare, then that's a good reason. So you have to figure that out.

[1:16:24] Dr. Linda Bluestein: Well, I'm so grateful to you for coming and chatting with me today. I really have enjoyed this conversation. I know the listeners will as well.

[1:16:32] Wendy Wagner: Yeah, this was great.

[1:16:32] Dr. Linda Bluestein: Yeah. Before we go, are there any particular projects or research you're involved in that you want us to know about?

[1:16:42] Wendy Wagner: I'm sure we'll do some follow-up to our cervical instability research. The next step would be to start trying to see what therapeutic treatment techniques would be helpful for those different categories of patients. 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, give me a call.

[1:17:16] Dr. Linda Bluestein: Okay. And speaking of giving you a call, where can people find you?

[1:17:21] Wendy Wagner: On my website. Wendy4therapy.com is my website — with the number 4. And if you Google EDS Chicago, I'll come up pretty quickly. I am unfortunately booking out pretty far, just like everybody else who works with this population. I'm not proud of that, and I wish it were different. I'm working on trying to shorten that waitlist, but for right now we're all doing the best we can.

[1:17:47] Dr. Linda Bluestein: Right, right. And just to confirm — Wendy4therapy is with the number 4, correct?

[1:17:53] Wendy Wagner: Correct.

[1:17:55] Dr. Linda Bluestein: All right. Well, thank you so much. We've been trying to have this conversation for quite some time. I can't believe we finally did it.

[1:19:26] Wendy Wagner: Thank you. This was wonderful.

Dr. Linda Bluestein: Well, that was a great conversation with Wendy, and I feel like we've talked to a lot of physical therapists, but we still need to talk to a lot more 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.
[1:19:26] 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 at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, and LinkedIn at hypermobilitymd. You can find Human Content, my producing team, at humancontentpods on TikTok and Instagram. You can also find full video episodes up every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies Program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodyspodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of the community, and we'll catch you next time on the Bendy Bodies Podcast.