Too Flexible to Fix? Orthopedic Surgery and Hypermobility with Dr. Jocelyn Wittstein

[00:04] Dr. Linda Bluestein: Welcome to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in Ehlers-Danlos syndromes. My guest today is Dr. Jocelyn Wittstein. Dr. Wittstein is an orthopedic surgeon at Duke University School of Medicine specializing in sports injuries and joint conditions. Her research emphasizes ligament injuries like the ACL, joint instability, and factors affecting musculoskeletal health, including areas relevant to hypermobility such as tissue resilience and hormone influences.

I'm really excited to have this conversation today because we know that there are so many people who are dealing with orthopedic injuries, and it is really challenging to sort out when surgery might be indicated and when you should take a more conservative approach. This podcast is for education only and is not a substitute for personalized medical advice. Stay to the end for a hypermobility hack. Here we go.

Well, I'm so excited to be here with Dr. Jocelyn Wittstein. Thank you so much for coming to chat with me today on the Bendy Bodies Podcast.

[01:50] Dr. Jocelyn Wittstein: Thanks for inviting me.

[01:50] Dr. Linda Bluestein: Yes, of course. So, as you know, this podcast is for people who have joint hypermobility, connective tissue disorders, and that often involves joint instability, dislocations, subluxations, all kinds of things like that. Can you start out by telling us what this means when we talk about joint instability? How should we be defining this?

[02:07] Dr. Jocelyn Wittstein: Well, we actually talk about this a lot in orthopedic surgery. There's a little bit of a difference between instability and laxity or hypermobility. There are patients or people who have hypermobile joints. They have a lot of laxity, but they're able to control the stability of their joints. Someone who can voluntarily pop their shoulder out or pop it back in because there's so much laxity in their joint, but they're able to live their daily lives without instability — as opposed to someone who has so much hypermobility and laxity but doesn't have that control. Every time they lift their shoulder up, the ball falls out the back of the socket. They're experiencing instability in the setting of their hypermobility.

So there's actually a lot of nuance in differentiating between instability, laxity, and hypermobility. Hopefully that example kind of helps clarify that a little bit. And hypermobility can be diffuse, can involve all of your joints and ligaments, or some people have just hypermobility and laxity of their shoulders or the patellofemoral joints. It's not always whole-body hypermobility. So that's another nuance to that.

[03:27] Dr. Linda Bluestein: Yeah, we talk about that a lot. That's really helpful. And so it sounds like, as you're defining this, control is a very important feature — how a person is able to control that joint.

[03:41] Dr. Jocelyn Wittstein: Yeah. A person can experience instability or not in the setting of having hypermobility and laxity of joints. Depends on the person.

[03:51] Dr. Linda Bluestein: And what about the difference between dislocation and subluxation?

[03:51] Dr. Jocelyn Wittstein: Subluxation would be an incomplete translation of the joint. Like your patella — it can maybe slide partly over, but doesn't completely dislocate. It's like a partial dislocation. And dislocation means the entire surface of the joints that are supposed to be articulating are completely out of place and then back in. So a dislocation is more severe than a subluxation.

Subluxations can be hard to detect because they don't present in the same way as a traumatic dislocation, for example. The patellofemoral joint is a great example of that. People will have these subluxations, these partial excessive movements of the patella, whereas a dislocation might be — visibly — the patella completely out of the joint and then goes back in, followed by some swelling, that kind of thing. It can be a little subjective because obviously we don't see everything that happens to someone over the 24 hours of their day or whatever.

[04:56] Dr. Linda Bluestein: And that's what I tell people too. I'm hypermobile, I have hypermobile EDS, and I did not realize that I was subluxing different joints in my body. I never had to go to the ER to get a dislocation reduced or anything like that. You just know what your own body feels like, right? You don't know what other people's bodies feel like, so you don't know what is "normal" — although maybe some degree of subluxation is something that a lot of people experience, whether they have joint hypermobility or not.

[05:23] Dr. Jocelyn Wittstein: And also, there can be a big difference between people who have a traumatic instability event and don't have underlying hypermobility versus people that do have hypermobility. They can have dislocations that are less traumatic because the play in the joint allows that to happen without so much traumatic damage being done with each dislocation. But there's more micro-damage that can happen with chronic instability.

So there's quite a spectrum of instability — the very traumatic type that doesn't have any underlying hypermobility, and then the very atraumatic type that happens with just activities of daily living in the setting of a lot of hypermobility. And there are definitely people in between who have hypermobility, but then they have a traumatic event and the joint that didn't bother them a lot before now does. So there are really extremes and everything in between.

[06:16] Dr. Linda Bluestein: And is it true that if you're hypermobile and you have a lot of joint laxity and some joint instability, you can experience a dislocation and it can either reduce on its own or you could self-reduce it, but you're not having to go to the emergency room? I feel like there are a lot of people who think that if it's not being reduced in the emergency room, it's not a dislocation.

[06:40] Dr. Jocelyn Wittstein: Right. People who have hypermobility are much less likely to need someone else to put their shoulder back into place because it won't often get locked out of place. It can be out very quickly and very quickly go back in. Think of something that's stiffer and then gets displaced — you're going to cause some actual anatomic disruption of fibers or ligaments or stabilizing structures. As opposed to something that has more laxity — it can stretch to be out of place and then recoil and go back in, because there's more give in the structures. The structures don't necessarily fail or detach or become disconnected, but they have the give or the slack to allow that much motion in the joint. So they also go back in much more easily. There's again quite a spectrum there.

[07:31] Dr. Linda Bluestein: And when you're taking a history, what are the things that make you think, this is something I need to worry about?

[07:38] Dr. Jocelyn Wittstein: People will say this runs in their family — like, oh, everyone in my family has hypermobile joints. Or someone who has an instability event with very little trauma, like someone whose patella dislocates just getting out of the car, or simply walking, or standing up from a chair — as opposed to someone who was swinging a bat really hard and pivoted with their cleat stuck, or something where there's more force on the joint. There's different degrees of trauma causing the instability event. If it's very atraumatic, we start to wonder, is this someone who has hypermobility?

There are certain overlapping conditions we sometimes see. POTS, for example — postural changes in the ability to maintain your blood pressure — there's a lot of overlap with hypermobility. The thought is that that might be due to the ability of the vessels to provide tone essentially, just like perhaps there's more laxity in other tissues, perhaps in vessels as well. And that may be why there's a big overlap in those conditions.

And of course, whenever I see anyone presenting to me with the complaint of instability in their joints, we do a Beighton score, which I'm sure you've talked about on here.

[09:25] Dr. Linda Bluestein: Oh yeah, talked about ad nauseam, yeah.

[09:25] Dr. Jocelyn Wittstein: It's just a way to assess for hypermobility — a quick test of 9 points that can easily be done to see if someone has generalized hypermobility. But again, I'll have patients who don't have a really high Beighton score who have clearly atraumatic ligamentous laxity of their shoulders or their knees or something that's not involving every joint. So it's not a perfect scoring system.

[09:46] Dr. Linda Bluestein: Well, also, as you mentioned at the very beginning, they could have localized joint hypermobility, so they might be hypermobile only in their shoulders.

Dr. Jocelyn Wittstein: Yeah.

[09:54] Dr. Linda Bluestein: Right. So they might not have generalized hypermobility. Okay. So, we're going to get more into some of the nuance of surgery and things like that, but just for the big picture, what patterns would you see that make you concerned that a person might need surgical intervention?

[10:12] Dr. Jocelyn Wittstein: People who are failing multiple rounds of high-quality physical therapy where they're really engaged in it. When there's joint damage occurring because of the instability events — I think it's always easier to give concrete examples. If someone dislocates their patella repeatedly and now they're chipping off some of the cartilage in the back of their kneecap from dislocating, that's not good. We need to make an intervention.

Someone can compensate for and do okay with hypermobility of their shoulder, even though they have instability events that are fairly atraumatic. But then there's one that's kind of traumatic and now they have a labral tear on top of a capacious capsule on their MRI. It's just kind of too much for the shoulder to tolerate because now there's more than one issue contributing to instability.

In the shoulder specifically — which is probably the most common joint I end up seeing for hypermobility — I sometimes see people who've been to physical therapy four times for three months, or they're like, I've been in physical therapy for five years. It's not getting better and their shoulder's not functional for them. There is reasonable evidence for doing arthroscopic capsular plications. Certainly the results can be tempered and sometimes can stretch out over time, but I think just really listening to patients, seeing what have they done and tried, what was the quality of the physical therapy that they did, what are the things they're not able to do — is it simple functional activities of daily living, or are the goals maybe something I would discourage people with generalized high-level hypermobility to pursue? Like being a cheerleader tumbling on hard surfaces when you have really loose shoulders — that's probably just not a good choice. There are choices to be made sometimes in the setting of these conditions, which we can't completely fix with surgery many times.

[12:30] Dr. Linda Bluestein: And you grew up as a gymnast, correct?

[12:30] Dr. Jocelyn Wittstein: Yeah, I was a gymnast. I have been a very hypermobile person for much of my life. My Beighton score has probably diminished over the years, which does happen. I tell people this all the time — people who are really hypermobile when they're young can become sort of more normal mobility when they're in midlife, when other people might be stiff. So sometimes, not for everyone, but sometimes over time, hypermobility and generalized laxity can resolve a little — not fully resolve, but can become a little different in midlife than it is when you're young. Because everyone gets a little stiffer as they get older. People who are really hypermobile just don't get as stiff.

[13:19] Dr. Linda Bluestein: So let's talk a little bit about joint noises or sensations, because I feel like this is an area that's confusing for a lot of people. There's a difference, in my mind, between if you move a joint and it makes a noise versus people who crack things on purpose. When noises happen spontaneously or with some kind of forced maneuver, are those always subluxations? Can joints make noises without having a subluxation? Is there any way to correlate that?

[13:53] Dr. Jocelyn Wittstein: Joints can click and pop, and even young children with pristine knees and pristine cartilage can sometimes have crepitus. That clicking and popping, especially behind the patella — crepitus — I kind of think clicking and popping can be not what we think it is. There's so much clicking and popping. Shoulders are very clicky, poppy joints. The patellofemoral joint is very clicky, poppy. As you bend and straighten your knee, every single person's patella will exit the groove and then enter it at various degrees of flexion. Sometimes people have a little pop with the entry and exit of the patella from its groove, for example. We have layers of tissue that allow the rotator cuff to glide underneath the deltoid that can click and pop, and your AC joint can click and pop. Sternoclavicular joints — so many joints have normal clicks and pops.

There are clicking and popping sounds or feelings associated with certain subluxations or dislocations or translations of the joint. A classic one is when the shoulder goes out the back and then as you bring your arm up and over, it sort of slides back in — you'll feel a little clunk. So there are things like that that are actually signifying the joint sort of exiting and reentering the groove. But not always. The hip is another example — some people have snapping from their IT band or their greater trochanter or their iliopsoas deep in the hip. Or it could be that you've got some hip dysplasia or a labral abnormality. I think it's hard for people to figure out what's actually clicking and popping.

[15:37] Dr. Linda Bluestein: I remember working with a physical therapist for shoulder problems. This is before I knew that I was hypermobile. I had an elbow — I had a submuscular transposition of an ulnar nerve. At that time, the orthopedic surgeon measured my elbow hyperextension and said it was like 22 degrees hyperextended. This was at the Mayo Clinic where I trained. He said I was going to lose that hyperextension, but he never told me what it meant.

So I was seeing this physical therapist for a shoulder problem. I've been in and out of PT my whole life. I said something about my shoulder and clunking, and then it did it during the session when I was actually there with her and she had her hand in the right spot that she could feel it. It was clearly different — not like the clicking and popping you mentioned. Are there certain things, other than saying clunking versus clicking, that people can pay attention to that will help them identify which noises are more concerning than others?

[16:33] Dr. Jocelyn Wittstein: I think it's really hard for non-medical people to assess. I can't tell you how many people come into orthopedic clinics asking about clicking and popping, and most of it's not concerning. I think that's a really hard thing to translate. I think that most people with hypermobility can sense when their shoulder or hip or knee or whatever is subluxating or slipping out of place. The sound is probably not what's giving you that clue though.

[17:03] Dr. Linda Bluestein: That's very helpful. The sound is not the most important part there. And what about patients who feel unstable all the time, but they don't have these classic, really dramatic dislocations? How do you handle that?

[17:17] Dr. Jocelyn Wittstein: Life as a person with hypermobility can be very frustrating. I do see patients going doctor to doctor to doctor, frustrated that there's not necessarily a solution for, or a way to get rid of, this sensation of generalized instability of joints. And that's because it's inherent in the structure of your body in many cases. There isn't a magic wand.

I tell patients, you may not be having frank dislocations, but no one is inside your body. No one can feel what you're feeling. You may feel subtle extra movements in your joints that we cannot resolve surgically — just this subtle sense of instability in all of your joints. It probably has to do with your generalized laxity, the structure of your collagen, things like that.

I try to empathize with people and recognize that there is definitely a higher likelihood of people with hypermobility having more joint pain. I see a lot of joint pain as people get into even their 30s and 40s, and certainly later on in life, because these micro-motions of the joint — even if they're not full-on dislocations or even subluxations — are probably creating small micro-damages or shear forces across cartilage surfaces, menisci, labrum, things like that.

I usually tell people to try to make lifestyle choices — don't choose to play contact sports. Find what feels right for your body. It may be swimming, maybe it's not high impact, maybe it's lower-intensity strength training at higher repetitions, not super high intensity, maybe not Olympic-style lifting. Finding what you can do to strengthen the muscles around your joints that feel unstable can provide some stability, but each individual has to find the way that they can do those things.

A person with hypermobility who finds a physical therapist that gets them is really lucky, because people with hypermobility are in and out of physical therapy and eventually learn what to do and what works best for them. Try to maintain strength in not super high-intensity ways, and choose activities that are less aggravating — because we're not going to change the substance of your collagen, we're not going to change the essence of you as a hypermobile person. There's not a medical treatment for that. And that's frustrating.

[20:05] Dr. Linda Bluestein: Well, I am going to insert something there, because we're discovering more and more about the immune system and especially mast cells and how mast cells release mediators that can degrade connective tissue. There are some people — not everyone, but some people — who might have hypermobile EDS, the phenotype of hypermobile EDS or HSD, but it's actually based in their immune system. So when we work on their immune system, and this has happened with a lot of my patients where we stabilize their mast cells, they actually get dramatic improvement in their joint instability. So there's no single magic bullet, but stabilizing people's mast cells in some cases can really make a significant difference.

[20:51] Dr. Jocelyn Wittstein: Yeah, I'm sure that's promising, and that's good. In an orthopedic office, that's going to be out of our wheelhouse. But I see a lot of young athletes, and the other issue is that certain body characteristics tend to select into certain sports. I don't think being a gymnast or a dancer makes you hypermobile, or being a swimmer with amazing shoulder mobility — I don't think that causes the hypermobility. But sometimes hypermobility is a gift and a curse. Some people are able to excel in those sports because they have the hypermobility — they can move their hips or their leg in a way that many people can't, or have that reach in swimming. But it's really important that those people maintain strength in the small and large muscles around those joints that then stabilize those joints too.

I'm mostly seeing the younger population trying to get through their athletic life and then experiencing these subluxations and dislocations.

[22:07] Dr. Linda Bluestein: And there's a big difference to me between somebody who's functioning well except for their right shoulder versus somebody who has more diffuse joint instability, where it's like, okay, we need to work on this holistically and not play whack-a-mole. But if it's otherwise doing pretty well except for one big problem—

[22:28] Dr. Jocelyn Wittstein: Yeah. And there are higher failure rates oftentimes, for reason, in people who have generalized hypermobility. I think we have to recognize that and sometimes need to do things a little differently. For example, someone who tears their ACL but has generalized hypermobility — their Beighton score is like higher than 5 and they have more than 10 degrees of extension in their knees. That's someone where we may do our surgery a little differently. I might add something called an internal brace — something to stiffen the reconstruction — or I might add an extra band on the outside of the knee called a lateral extraarticular tenodesis, recognizing that there's a greater likelihood of failure. Something that's going to try to improve the outcome for those people. So we can be strategic too, depending on the surgical intervention.

[23:21] Dr. Linda Bluestein: So that's great that you are altering your technique based on the information you're getting from their Beighton score. If you're suspecting that they have joint hypermobility, that's really important. And I do suggest that people ask that when they're talking to a surgeon — how do you alter your technique? Do you have other questions that you think people should ask surgeons that will help them know if the surgeon is comfortable and/or has operated on a fair number of people with joint hypermobility knowingly?

[23:58] Dr. Jocelyn Wittstein: I think most orthopedic surgeons are aware of hypermobility. And I do want to say — unless you have something that really needs surgery, the reason you might see surgeons not jumping to surgery is because surgeons know that sometimes one surgery can lead to another in people with hypermobility. I sometimes feel like patients are frustrated, like they've gone to a surgeon and feel like something is being kept from them, or there's some gatekeeping of surgery. But the surgeries may not work as well, or might lead to another surgery, or may work for a while and might stretch out over time. A lot of times surgeons are trying to spare you a surgery. We want to do surgeries on people when we think we're highly likely to help them and they're going to do well.

That's where it gets into shared decision-making with the patient. Have you had really good PT? Are there lifestyle modifications you can make? Do we want to go down this road of surgery? There might be a higher likelihood of failure, or it might help for a few years and then stretch out again. I do sense that frustration patients have — as if someone is maybe not understanding what they're going through and not giving them the solution. But sometimes there aren't great solutions. And sometimes there are, with maybe not as good of outcomes as there could otherwise be.

[25:30] Dr. Linda Bluestein: I'm actually married to a surgeon — I'm married to a urologist, he's retired now. He likes to do surgery and he would tell me about patients who would be so upset that he would not do surgery on them. I think this is a really important point for people to understand. You're an orthopedic surgeon, so you're not going to say, here, take these five different drugs for your mast cells. You're going to say, I can either do surgery or I cannot do surgery. And if you're not going to do surgery, you might recommend physical therapy or a few other things. So if they're told that they're not a surgical candidate, that is disappointing for a lot of people, but I'm glad you explained that.

[26:22] Dr. Jocelyn Wittstein: It's also disappointing for people who don't have hypermobility, but I feel like I need to extra-explain to my patients with hypermobility, because I know that they've been to multiple doctors and it can be frustrating to sometimes not have a solution. There are a lot of things like that in life — arthritis that never goes away, and if you're a young person, maybe not a candidate for a total joint yet. I sometimes feel like I have to break a lot of bad news to people. It's not like cancer, but there's a lot of delivering of maybe not what people want to hear sometimes.

[26:59] Dr. Linda Bluestein: I hear that. So what about imaging? I feel like this is another thing that's really frustrating for a lot of people. They'll get lab work done, they'll get imaging done, and the imaging is "unremarkable." But we know that these are often dynamic problems. When is imaging helpful and when is it not helpful?

[27:22] Dr. Jocelyn Wittstein: It's helpful for diagnosing other sources of problems like cartilage damage — is there any anatomic harm done that's grossly remarkable that we can make better with surgery? In the shoulder, I think an MRI with an arthrogram is very helpful for differentiating between what I call a capacious capsule — just this extra volume that the capsule can accommodate. The bottom of the shoulder joint, I always describe it as like a hammock, sort of the capsule supporting the ball in the socket. People with ligamentous laxity have a saggy hammock — you wouldn't want to sit in it, your bottom would be on the ground. People with arthritis have a very stiff, uncomfortable hammock — it's flat, it has no give. You also wouldn't want to sit in that hammock. An MRI with an arthrogram can see if you've got this capacious capsule, which I expect to see in people with ligamentous laxity.

But you can also see if someone had a traumatic event on top of their preexisting ligament laxity — have they also injured or torn off their labrum? I just saw someone like that today who has been okay, had always had this sense that their shoulder could slip out of the joint, but then had a slightly more traumatic event and ever since then can't control it anymore. On the MRI with the arthrogram, you can see a little bit of peeling away of the labrum at the back of the joint. This person has done physical therapy at various times in their life and responded to it, but then had this new injury and done a course of physical therapy and not responded to it. So we're going to do a labral repair and a capsular plication. I always have to caution people with hypermobility that you're going to have a period of time where you may have less mobility. Your shoulder may feel a little tighter — which, ironically, people who are used to having very mobile joints don't love the feeling of having a joint that is a little bit tighter, because they're used to having it be so mobile.

In the hip, some people with hypermobility have not just ligamentous laxity or collagen issues — sometimes there's a structural issue related to the shape of the socket. You could have a shallow socket, like a dysplastic hip, where instead of it being like a ball in a socket, it's just not covered enough, and that can lead to microinstability. Just because you have hypermobility doesn't mean you can't have other contributors making things worse. It could be the shape of the socket, the orientation of the socket, the shape of your patellofemoral joint. There are people who have generalized hypermobility, 9 out of 9 on the Beighton scale, but in their patellofemoral joint they have a misshapen groove — and that can be addressed.

So there can be multiple contributors, and in a lot of cases there are contributors that can be changed. Your hypermobility in many cases is not going to be changed, but some of the aggravating factors can be addressed. The key is: can you find things that are addressable and that you can make better, or not? Sometimes the answer is there's nothing surgically addressable, and sometimes there is. Imaging is very important, especially if you're not responding to the typical interventions that we would hope would make you better.

[31:23] Dr. Linda Bluestein: We're going to take a quick break, and when we come back, I want to talk more about hips — specifically the difference between the IT band slipping or internal snapping hip versus true hip subluxation or dislocation. We will be right back.

So we're back with Dr. Jocelyn Wittstein. I'm really interested to talk more about hips in detail. You mentioned hip dysplasia, where the hip socket is more shallow, which is something you probably see quite commonly. That can also be more common in dancers, right? Because that gives them the ability to have greater range of motion.

Dr. Jocelyn Wittstein: And gymnasts.

[32:59] Dr. Linda Bluestein: Yeah, and gymnasts. And it can be advantageous for them up until a point — until they start getting more arthritis and need hip replacement surgery, I would think. Can you talk a little bit about this whole thing where people get a sensation of snapping in their hip, but a lot of the time it's either the psoas or the IT band versus true subluxation and dislocation of the hip, which also can happen?

[33:26] Dr. Jocelyn Wittstein: The iliotibial band is at the outside of the hip, so you can have an external snapping hip — that band of fascia called the IT band goes from your iliac crest all the way down to your tibia, crossing like two joints. Women of course have wider hips and a greater trochanter that can snap underneath the IT band. That's almost visible on the outside of the hip.

Then dancers, for example, can be prone to an internal snapping hip where the iliopsoas is just a little tight and rubbing over a bony prominence. That can happen more with flexing and rotating the hip. As opposed to hip subluxations — I've never experienced that myself, but people will describe this as a more subtle clicking. You could also have that with a labral tear. And again, clicking, popping — all these things are really subjective and hard to sort out.

You can have that if you have femoroacetabular impingement. Those people don't really necessarily have true instability, but the ball is overcovered almost, and that can lead to labral tearing versus undercoverage where you're getting too much stress on the smaller part of the socket. This is where imaging can be very helpful. An MRI, depending on your institution with or without contrast in the hip, can be very helpful to sort all that out. And X-rays are also really important for studying the shape of the hip — the socket, the neck. Just blanket saying everything is hypermobility in a person, or you have this global problem throughout your body, should not be the answer. Especially if you have certain joint symptoms, imaging can be very valuable.

Dr. Linda Bluestein: Hickam's dictum, right? That you can have multiple things going wrong at the same time. So what about indicators for surgical success? Are there certain things that you see that make you think this person is more or less likely to do well? I believe when I've looked this up, if a person has chronic pain — well, of course everyone going into a knee replacement has chronic pain — but there were certain indicators like anxiety, depression, trauma, that actually increased the risk of having chronic pain after knee replacement surgery. Are there certain indicators you have seen?

[36:22] Dr. Jocelyn Wittstein: I think in general we kind of expect things to provide a certain amount of improvement. You're starting from one place and ending in another, and there can be similar amounts of improvement, but maybe not as much. We do know a lot about anxiety and depression. With many types of procedures — hip labral surgeries, rotator cuff repairs, things like that — there are these scores we assess for your overall shoulder or hip wellbeing, physical function, mental health things. People with these comorbidities tend to see the same amount of improvement, but they don't rate themselves as high at the end as people who don't have some of those comorbidities.

I haven't seen a study specifically looking at that with hypermobility, but there's this general pattern of a place where you start and a place where you end. One of the things associated with knee replacements, for instance, is that your preoperative range of motion can affect your postoperative range of motion — though I don't think that's as likely to be an indicator in someone with hypermobility.

We talked about how people with excessive knee extension can have a higher failure rate with ACL reconstruction surgery, and we can take extra measures to try to prevent that. When I see someone with patellar instability who has generalized ligamentous laxity, I'm using a donor tendon rather than their own tendon to do the ligament reconstruction, because there's really not much difference in the outcome between using something from your own body versus a donor tendon with that type of operation — but I also figure, maybe I'll use some other collagen.

This is a gestalt and I don't have a study to back this up, but I do feel like I see higher rates of anxiety in younger women with hypermobility than in people without. And this is something I've never written about or read a study on, but I see a large association in adolescent girls with shoulder hypermobility, generalized ligamentous laxity, and cutting. I don't know if you've ever encountered that — people cutting. I've always wondered about that. I don't know if it's just who comes to the orthopedic clinic — people who have enough shoulder instability in the setting of hypermobility that they're seeking advice from a surgeon. But I've wondered about it so much that I've thought about doing a study on it, though I don't know how to study it because I don't know what the baseline would be. Did that resonate with you?

[39:38] Dr. Linda Bluestein: Yeah, that's super interesting. I literally just recorded an episode last week with Dr. Jessica Echols — it's the third time I've interviewed her and she's an expert on joint hypermobility, connective tissue disorders, and neurodivergence. We know that there's a huge overlap with anxiety, tremendous overlap with autism and ADHD. So I'm thinking with the cutting, yes, if there's more anxiety and trauma — and I'm not an expert by any means on the self-harm aspect of that — but we were definitely planning on talking about that in the next part of our conversation.

[40:23] Dr. Jocelyn Wittstein: Maybe you can ask her. It's just something I have observed. Specifically in hypermobility patients with chronic shoulder instability that they're not doing well with, so often when I see an adolescent female who I see like cutting, it's someone who's there to see me for that problem. I don't know if there's a relationship or not, but I've wondered it so many times over the years.

[40:49] Dr. Linda Bluestein: I know for an absolute fact, because this has been studied extensively, people with hypermobility and connective tissue disorders have experienced a lot of medical trauma. That may contribute as well. It's extremely frustrating — you have all these problems, you go to doctors, and you're told that you're crazy, or made to feel that way anyway. There's also, I think, a really strong propensity to gaslight yourself.

When I was having a lot of problems with my knee — I'd fallen off a mountain bike and my orthopedic surgeon had just done my knee arthroscopy. He did the surgery on a Thursday or Friday, and I was back at work on Monday doing a heart case, standing on my feet all day. I saw him in the doctor's lounge and said something about my knee being sore. And he said, "I looked inside your knee. There's nothing wrong with your knee." And I just internalized that. It wasn't until years later that I remembered, oh, I had a bone bruise in my femur. And he can't see inside my ligaments anyway.

[41:48] Dr. Jocelyn Wittstein: Yeah, I would not want you on your feet — I would say take two weeks off to let the swelling go down and the portals seal.

Dr. Linda Bluestein: Right. But because he said that to me, I didn't think, oh, well, he must be wrong. That's a good lead-in to my next question: how do you recommend people find an orthopedic surgeon who might be more understanding and/or more amenable to altering their surgical technique because you have joint hypermobility or a connective tissue disorder like EDS?

[42:42] Dr. Jocelyn Wittstein: I think physical therapists have a good sense of that. A lot of times physical therapists have a certain patient population and they've figured out who they can refer their patients to. That can be a good source.

You probably have a good chance if you're seeing an orthopedic surgeon who was a former gymnast or dancer, because they may have some of that themselves. That's a really narrow search, but — I do think women are more likely to experience hypermobility. I'm not making a blanket statement about male or female orthopedic surgeons, but if you're looking for commonality of experience, that might be more of a common lived experience in a female orthopedic surgeon. And there are many wonderful male orthopedic surgeons — I'm not making a comment about all orthopedic surgeons by sex or gender. I'm just thinking about how you might find somebody who is going to hear all the aspects of that.

It could be trial and error. The other thing about orthopedic surgeons is that people are quite subspecialized. You're not going to go to an orthopedic surgeon these days and have them take care of your whole body — that doesn't work that way anymore. A lot of sports medicine doctors are shoulder and knee, or there's someone who does a lot of elbow and hand, or hip. Hip arthroscopy and hip preservation is practically its own subspecialty anymore. You're going to have foot and ankle specialists, arthroplasty specialists. The other frustrating thing for people is you may end up seeing a lot of doctors if you have a lot of focal complaints, and you probably do want to see someone who is really specialized in that area.

Recognizing that a lot of these things are nonsurgical, probably often starting with a PT and bumping up to a surgical specialist when needed makes sense. There's not like a Yellow Pages of orthopedic surgeons that are knowledgeable about hypermobility.

Dr. Linda Bluestein: Did you have thoughts about what might be red flags — if somebody is talking to an orthopedic surgeon and they answer a question in a certain way, that that might be a concern?

[45:56] Dr. Jocelyn Wittstein: I was being serious about concern for hypermobility contributing to your condition. Someone who doesn't — one of the things that's important to do during that visit or in that exam would be to do a Beighton score and assess for that. One of the things I think is a little funny about the Beighton score is that it doesn't include anything with the shoulder or the patellofemoral joint. So there are certain things I'll check anyway — the small fingers, the thumb to the wrist, elbow extension —

[46:30] Dr. Linda Bluestein: Oh, look at that elbow, by the way.

[46:36] Dr. Jocelyn Wittstein: Yeah, I get some points.

[46:37] Dr. Linda Bluestein: Let me get my goniometer out a second.

[46:37] Dr. Jocelyn Wittstein: Yeah. Palms to floor. But I'll also do a quick patellar translation, a sulcus sign, the shoulders — because again, some people don't have that global finding. Is there an appropriate assessment done? And are your concerns heard?

On the flip side of things, I sometimes have patients who've been told they have hypermobility and that their generalized hypermobility is the source of their problems, but then I'm seeing them and they're very much not hypermobile. Their Beighton score is like 0 out of 9 or maybe 2, and there isn't excessive patellar translation or sulcus signs. I also don't want people to carry some sort of definition or burden in their mind unnecessarily.

Sometimes someone will have been told at some point that they have something pathologic, and maybe they don't. So sometimes I'm doing the Beighton score and listening to them and checking their patellar mobility and seeing how much sulcus sign they have in their shoulder, and we need to reorient a little bit — because maybe that's not actually the problem. And I don't mean to say that to dismiss anyone's concerns, but we have to really assess that. If someone's not even assessing that, that's not good. That's a hard conversation too. I think there's a lot of fear around hypermobility, and if someone tells you that you have it and by exam and history maybe you don't — if you have something else going on, we need to dig into that more.

When you bring it up, is it assessed? If it's not even assessed, that's concerning. How would the person even know if you have any signs of hypermobility? I mean, sometimes I see someone who'll say, no one's even checked me for that before.

[49:05] Dr. Linda Bluestein: And I do want to point out — the sulcus sign is where you pull on the arm and look for an indentation, because that indicates shoulder instability. And I also want to point out that one type of hypermobility is historical joint hypermobility. I love the 5-point questionnaire for that. I ask all of my patients the 5-point questionnaire, which I think is really helpful, and I can link that in the show notes.

Dr. Jocelyn Wittstein: Right — and there are people who had a long history of it. They'll say, my shoulders used to dislocate or this used to happen and now it doesn't. But now they have, sometimes, an early arthritic joint.

[49:45] Dr. Linda Bluestein: Yeah. What about regenerative medicine? I've been dying to ask you about this.

[49:48] Dr. Jocelyn Wittstein: There is reasonable evidence for reduction in inflammatory markers and symptoms of joint pain in people with mild arthritis. Most of the studies are done on the knee, looking at platelet-rich plasma that has reduced white blood cells — low white cell autologous conditioned plasma. There really isn't evidence that stem cell therapy is superior to that. One of my sports medicine primary care colleagues was one of the PIs on one of the largest trials looking at this, and stem cell therapy is just much more invasive, more expensive, more time-consuming, and doesn't really seem to do more than the low white cell autologous conditioned plasma in terms of dealing with symptoms of mild to moderate arthritis.

I don't personally use prolotherapy in my practice. It doesn't totally make sense to me, but I know that sometimes people use it for tendinopathies and things like that. There's mixed data on tendinopathies for PRP — for example, lateral epicondylitis. Some studies show it's effective, some don't. If you sum them all together, it comes out to nothing. But there are certain things I think aren't harmful, and when the alternative is a surgery that doesn't necessarily always work well, I'm okay with trying that. I don't mind doing PRP for lateral epicondylitis or chronic patellar tendinitis when I don't think it's harmful. If it's within the means of a person — these things aren't covered by insurance, and I'm not trying to oversell them to anyone — but sometimes there's something we use as an alternative to try to avoid surgery.

[51:40] Dr. Linda Bluestein: Great. That's helpful. And what about physical therapy when it fails? Do you have thoughts about what causes physical therapy to be unsuccessful most commonly, and/or what people can do to help the physical therapy be more successful?

[52:02] Dr. Jocelyn Wittstein: I think that would very much depend on an individual situation. It could be the underlying bony architecture, the severity of a person's collagen disorder, or maybe you haven't found the right physical therapist for you. But I don't think there's a global cause for failure of physical therapy that I can quote.

[52:39] Dr. Linda Bluestein: And I heard you — the reason I was introduced to you, I think I probably saw you on social media before I heard you interviewed on, I think it was Unpaused, Dr. Mary Claire Haver's podcast. You were talking a lot about hormones. Have you made any observations in terms of joint stability, instability, or joint pain when it comes to hormones?

[53:06] Dr. Jocelyn Wittstein: Oh gosh, so much. There are estrogen receptors in our joints that can affect the inflammation in our joints. In the absence of estrogen, there can be an upregulation of the inflammatory processes in the joint, which can lead to cartilage breakdown. That's part of why menopause is a time when we see this shift or increase in joint pain and earlier arthritis in women than men.

But also tendons have estrogen receptors. There's definitely an uptick in tendinitis and tendinopathies — plantar fasciitis, gluteus medius tendinopathy — in midlife as well. Interestingly, there are some studies to suggest that estrogen has effects on collagen synthesis, and we think about estrogen as affecting ligaments in terms of keeping them where they may be able to tolerate more stretchiness — they may be more lax, but the collagen may also be more organized.

We're studying that now in ACLs and people with normal ACLs. We're looking at hormone levels and stressing the knees and using models we've made to see what strains we see on the ACL with different hormone levels — estrogen, progesterone, testosterone, relaxin. We also think that cyclical changes in estrogen levels may relate to why women are more prone to ACL tears. It's not quite clear yet whether there's a particular phase in which women are more likely to injure their ACLs, or whether you're more likely to tear your ACL when it can tolerate being more stretched versus when there's disorganization of collagen fibers. In some of our preliminary data, we did see that the signal intensity of the ACL suggested better organization of the collagen fibers when estrogen levels were higher. But we're still looking into this — it's very early.

So there are certainly hormonal effects on tendons, joint inflammation, and ligamentous laxity. That may affect women in the premenopausal state with cyclical changes, and then obviously in midlife with more ongoing changes. And then there's also the influence of hormone therapy. There's a lot to continue to study here.

[55:44] Dr. Linda Bluestein: Like you said, you have birth control earlier in life that a lot of people are using, and then hormone replacement therapy later on the other end.

[55:58] Dr. Jocelyn Wittstein: But I do think also, if you're a hypermobile person and then you go through menopause, you could stiffen a little bit. And I don't know how the menopause transition with hormone therapy affects hypermobility. I'm not sure, but something to think about.

Dr. Linda Bluestein: Well, it is interesting because I see with a lot of people that once they go through menopause, the perimenopause can be really rough because obviously hormones are all over the place. But once they go through the menopause transition, the more steady state — whether they're on HRT or not — can be a lot better, especially from the standpoint of their mast cells. Mast cells have hormone receptors on their surface as well, so their mast cell symptoms can get better.

[56:46] Dr. Jocelyn Wittstein: Yeah. It's a rough transition for everyone, I think.

[56:51] Dr. Linda Bluestein: Yeah, definitely. And what about testosterone?

[56:51] Dr. Jocelyn Wittstein: There's some information — in women, actually some pretty well-done studies — showing an inverse relationship between testosterone levels. So lower testosterone being more associated with knee pain and the actual development of knee arthritis. There may be some joint pain-ameliorating effect of testosterone. Some data suggests that in knees, but not in hands. I think we're learning more about this, but there are a couple of studies supporting an inverse relationship between testosterone levels and knee pain and knee arthritis in women specifically.

[57:28] Dr. Linda Bluestein: I prescribe testosterone to a fair number of people and I personally use topical testosterone, and I find it to be very helpful. Well, this has been such a great conversation, and as you may know, I like to end every episode with a hypermobility hack. Do you have a hack for us?

[57:49] Dr. Jocelyn Wittstein: Hypermobility hack. Well, I think we talked about some of them. This is very obvious, but I'm saying this for younger people with hypermobility: avoid demonstrating repeatedly that your joint can go out of place or how it goes out of place. A lot of people do this when they're younger — not as a party trick, just like, hey, look what this does. You want to actually avoid that if you can.

And in line with that, yes, you have extremes of motion, but if you don't need them for what you're doing, don't do exercises or movements in the greatest extreme. If you're strength training, you don't have to use your full arc of motion. You can limit the arc of motion to not be in the extreme range that's going to elicit some of that instability. They seem like really common sense things, but sometimes I say them to people and they're like, oh yeah.

You're not going to pathologically lose your extreme ranges of motion, but you don't have to always use the whole arc of motion — unless you're a ballerina en pointe and needing to do it in that moment. Avoid, unless you need to for a doctor's office visit or whatever, just sort of demonstrating it. You want to avoid, if possible, these repetitive cycles of popping your joints out of place. Some people can't control that, but if you can control it, avoid it. Each of those is a little inflammatory to the shoulder — or the knee or hip or whatever — over time, I think.

[59:40] Dr. Linda Bluestein: Yeah, I referred to that on a social media post as the fun phase of hypermobility.

[59:45] Dr. Jocelyn Wittstein: Yeah. So to the teenagers, I'm like, don't do that. Stop showing your friends that. Later on you're going to wish you weren't doing that.

Dr. Linda Bluestein: Because it doesn't hurt then, right?

[1:00:02] Dr. Jocelyn Wittstein: It doesn't hurt then. Exactly.

[1:00:02] Dr. Linda Bluestein: That's the problem. But it's like me with my skin cancer now. I'm so aggressive with sun protection, but it's a little late.

[1:00:06] Dr. Jocelyn Wittstein: Now you need a vitamin D supplement because you're not out in the sun.

[1:00:14] Dr. Linda Bluestein: Yeah. I should have been doing that many years before I developed so many skin cancers. I tell people to videotape themselves — and I videotape them when I see them for their appointments — so that way they have some evidence that they could do those tricks, so that later on in life if they're going to an appointment and somebody asks them to demonstrate—

[1:00:38] Dr. Jocelyn Wittstein: Oh yeah, that's a good idea. So they don't have to repeat it.

[1:00:42] Dr. Linda Bluestein: Yeah. And especially I often say, if you're doing the EDS "gangsta sign," put it up by your face so we can see that it's you. Although now with AI, people could probably alter photos if they want. But I often tell people to do that because that way they don't have to keep demonstrating over and over again. And if you're at a teaching institution — which obviously you are — sometimes they'll bring in the medical students and the residents and—

[1:01:09] Dr. Jocelyn Wittstein: Yeah, and it's like 10 people all asking for that, yeah.

[1:01:10] Dr. Linda Bluestein: Right. I've heard that from people — they had me do it, and then they had me do it again.

[1:01:16] Dr. Jocelyn Wittstein: Yeah, I don't make people repeat that. If my resident says they're 9 out of 9, I trust them. I don't make them repeat that.

[1:01:24] Dr. Linda Bluestein: That's good. Well, I really appreciate you coming on the Bendy Bodies Podcast today. It was really great chatting with you. Can you let us know where we can learn more about your work, and if you have any special projects or anything coming up?

[1:01:41] Dr. Jocelyn Wittstein: I'm an orthopedic surgeon at Duke. I'm kind of a Luddite — I don't have my own special fancy website, but you can find my professional website at Duke. I am on Instagram at @jocelyn_wittstein_md, where I mostly share bone and joint health literacy. I actually have a reel on there on how to do a Beighton score on yourself. I have a book that I co-authored, which is The Complete Bone and Joint Health Plan, which is more related to arthritis and osteoporosis education. Some of the aspects of reducing joint inflammation and anti-inflammatory diet might be relevant to people experiencing joint inflammation.

And I have some ongoing research, as I mentioned, looking at the effects of hormones on ACL laxity, effects of hormones on joint health, and frozen shoulder. My other work is related a lot to post-traumatic arthritis — arthritis that develops in young people in response to injuries like ACL tears and things like that.

Dr. Linda Bluestein: Well, I do want to ask — I know I promised we were going to wrap up, but I'm so glad you mentioned frozen shoulder, adhesive capsulitis, because I think this is something so confusing. I've had it multiple times in my left shoulder, a couple of times in my right shoulder — one time after a fall, but then one time I just woke up and it was frozen. And I have hypermobility, so this was like, what? Do you think there's a difference in terms of how frequently people with joint hypermobility or connective tissue disorders get adhesive capsulitis or frozen shoulder?

[1:03:21] Dr. Jocelyn Wittstein: This is my take on adhesive capsulitis in people with hypermobility. You can definitely get it. It may not be as obvious to you or the provider that you've actually lost range of motion, because it's really important to compare to your other shoulder. Someone who's very hypermobile, their normal mobility may be like 120 degrees of external rotation — like I have. Whereas for many people, 90 degrees of external rotation is a normal arc.

If you have 120-something, but now you have like 80 on one side as compared to 120 on the other, you have a 40-degree difference in range of motion. That may be how you're presenting with an early frozen shoulder or even getting into that frozen phase. It's normal for some people, but for someone hypermobile compared to their other shoulder, you may actually have lost quite a bit of motion. Not that you don't have a functional arc, but it's a sign of what might be going on. You have to really compare range of motion side to side if you're trying to detect adhesive capsulitis in someone who has a history of hypermobility.

And certainly it's a thing that happens to perimenopausal and menopausal women. Estrogen withdrawal can lead to inflammation in joints, and estrogen actually can inhibit cells called fibroblasts that can make the capsular lining of the joint more dense and less stretchy or flexible. So you can tip into this process of the joint getting inflamed and then the lining getting fibrotic and getting stiffer during this transition as your estrogen levels are shifting. That could happen to someone with hypermobility for sure.

[1:05:18] Dr. Linda Bluestein: And it can be very painful.

Dr. Jocelyn Wittstein: Yeah.

[1:05:19] Dr. Linda Bluestein: In the beginning phase especially, right? Very, very painful.

[1:05:21] Dr. Jocelyn Wittstein: Very inflamed and painful without any trauma. You could just wake up like that.

[1:05:30] Dr. Linda Bluestein: That's what happened to me one of those times. The pain got better, but it was still frozen.

[1:05:37] Dr. Jocelyn Wittstein: At least the pain was gone. And that was the stiffest your shoulder had ever been?

[1:05:42] Dr. Linda Bluestein: Absolutely. Most definitely. Okay. Well, thank you again. I know that you are very, very busy, so I'm really grateful to you for taking the time to share your expertise with me today.

[1:05:56] Dr. Jocelyn Wittstein: Thank you for inviting me.

[1:06:47] Dr. Linda Bluestein: Thank you so much for listening to this week's episode of the Bendy Bodies Podcast. If you'd like to go deeper, I share additional education, clinical insights, and resources in my newsletter, The Bendy Bulletin, which you can find on Substack at hypermobilitymd.substack.com. You can also help us spread the word about connective tissue disorders by leaving a review, sharing this episode, or sending it to someone who needs it. These small actions truly make a difference in raising awareness about conditions that are still widely misunderstood. And don't forget, full video episodes are available every week on YouTube — Bendy Bodies Podcast.

As many of you know, I offer one-on-one coaching and mentorship for both individuals living with connective tissue disorders and people caring for them. You can learn more about these options on the services page at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, X, and LinkedIn, all at Hypermobility MD.

As part of our collaboration with the UVA Ehlers-Danlos Syndrome Center, we also want to share some of their helpful resources. For questions or appointment inquiries, you can contact the UVA EDS Center at [email protected]. Again, that's the letter R as in Robert, UVA EDS Center at uvahealth.org. You can find answers to common questions at uvahealth.com/support/eds/FAQ.

Our incredible production team is Human Content. You can find them on TikTok and Instagram at Human Content Pods. As you know, we love bringing on guests with unique perspectives to share. However, these unscripted discussions do not necessarily reflect the views or opinions held by me or the Bendy Bodies team. Although we may share healthcare perspectives on the podcast, no statements made on Bendy Bodies should be considered medical advice. Please always consult a qualified healthcare provider regarding your own care. For more information about the Bendy Bodies program disclaimer, our ethics policy, submission verification and licensing terms, HIPAA release terms, or to get in touch with us, please visit bendybodespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.