Two hypermobile dancers. Similar bodies, similar training. One builds a 20-year career. The other is in chronic pain by 16. What's the difference?

That's the question Dr. Linda Bluestein is back to answer in Episode 134. A physician specializing in hypermobility and connective tissue disorders, Dr. Bluestein returns for her annual May conversation during EDS and Hypermobility Awareness Month, and this one goes somewhere we haven't gone before.

Loren and Dr. Bluestein dig into what actually separates long-term outcomes for hypermobile dancers and AcroDancers, what yellow-light warning signs teachers are misreading as normal, why proprioception breaks down in hypermobile students and what you can do about it in a regular class setting, and how to help students shift their relationship with pain without creating fear or anxiety around movement.

She also shares what new research is telling us about connective tissue disorders, why instability and hypermobility are not the same thing, and the one thing she wants every acro and dance teacher to do differently starting this week.

Click Here To Listen!

Previous episodes with Dr. Linda Bluestein:

Ep. 8 Informative Talk About Hypermobility Disorders: https://youtu.be/twtS7Q65P5s
Ep. 20 The Hypermobility M.D.: https://youtu.be/tIIy5knAdkQ
Ep. 35 Hypermobility + the Dancer: https://youtu.be/w_a3I8U6aGM
Ep. 65 Hypermobility Disorders: The Power of Proactivity: https://youtu.be/55KE6ASXAaI
Ep. 85 Hypermobility: Separating Fact from Fiction: https://youtu.be/FXykPixwBRw
Ep. 109 Beyond Flexibility: Recognizing and Supporting Hypermobility in Dancers: https://youtu.be/FXykPixwBRw

About Dr. Linda Bluestein

In addition to her private medical practice, Hypermobility MD, Dr. Bluestein is the founder and co-host of the podcast, Bendy Bodies with the Hypermobility MD,  and former co-host of “Hypermobility Happy Hour.” 

Dr. Bluestein is the Director of Education for the nonprofit, EDS Wellness, Inc. and founder and executive director of Bendy Bodies, an organization dedicated to empowering hypermobile performing artists. 

She has published a number of original research papers; presents work at national and international conferences, and is a contributing author for the book, Disjointed - Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.

Dr. Bluestein is a member of the Board of Directors for the Bridge Dance Project, the Allergy and Immunology Working Group for the International Consortium on EDS and HSD, the Advisory Board for Doctors for Dancers, and the Resources Committee for the Dance Healthy Alliance of Canada. 

More information about Dr. Bluestein can be found on her website, www.hypermobilitymd.com. 

Links:

Hypermobility MD 

Hypermodbility MD Podcast 

Bendy Bodies 

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PODCAST TRANSCRIPTION

Loren  0:00  
Hey everyone, welcome to the acrobatic arts Podcast.

Loren  0:05  
I'm Loren, and I will be interviewing some of the top leaders and innovators from the dance and acrobatic industry. If you are a teacher, performer, student, or a lifelong learner like myself, you are sure to find these episodes intriguing and full of inspiration.

Loren  0:21  
Acrobatic Arts is passionate about providing current and relevant information for everyone, so please sit back and enjoy as we share our passion with you and the world.

Loren  0:38  
The month of May is EDS and hypermobility Spectrum Disorder Awareness Month. And if you have been listening to this show for any length of time, you already know what that means. Dr Linda Bluestein is back. This is her seventh time joining us, and over the years, we have covered the basics of hypermobility, how to spot it in your students, how it changes as dancers age, forced hypermobility, the systemic symptoms, and I could go on and on, we have really covered a lot of ground together.

Loren  1:13  
Today we are going even deeper. Dr Bluestein talks about what actually determines whether a hypermobile dancer builds a long, healthy career, or their body starts to break down.

Loren  1:29  
Before we begin. A quick reminder for anyone looking for professional acro training, acrobatic arts trains and certifies 1,000s of teachers around the globe. You can learn more about our programs and upcoming courses at acrobatic arts.com

Loren  1:46  
Now let's welcome our guest for today.

Loren  1:51  
Dr Linda Bluestein, welcome back to the acrobatic arts podcast. Thank you so much for having me back. I'm so excited to talk to you!

Loren  2:00  
Every year when you come back, something has shifted in the area of hypermobility since we spoke last. What has changed? Or what are you seeing? More of that our dance community needs to know about.

Dr Linda Bluestein  2:15  
So it's fascinating, because there are so many great researchers out there that are really trying to understand connective tissue disorders, and there's so much that we don't know, but at the same time, we are learning more information. So for example, there was something called a proteomic study that was done not too long ago looking at proteins in a group of people that had connective tissue disorders versus a group of people that did not have connective tissue disorders, and what they found was that in a group of people with connective tissue disorders, there were many different proteins that were either excessively high or excessively low, and most of them correlated with immune system function or the complement system. 

Dr Linda Bluestein  2:55  
And we know that like all the systems in the body are connected, even though we like to thank the gastroenterologist deals with just the GI symptoms, and the immunologist just the immune systems, for example. But everything really is interconnected. So studies like these tell us the story might be a lot more complicated than we thought. We've had these calocrine genes that we also found were maybe increased in certain people with hypermobile EDS that needs to be done on a bigger scale to see you know is that something that really is consistent across people hypermobile EDS, but like this proteomic study, is really, really fascinating, because maybe there's a lot of other factors that we just had no clue about before, and I feel like our conversations are going to continue To be different every single year. 

Loren  3:41  
I think you're right. The most recent podcast that we ran with you, you talked about a study that was done with a ballet company showing a high percentage, I think it was around 80% or more of the dancers had some form of connective tissue disorder. Has anything come out of that since then? Or how do you think that changes? How you think about it?

Dr Linda Bluestein  4:06  
Right, right, so I do want to clarify so I know which study you're talking about. And they were looking at the Houston Ballet, and they had to volunteer, you know, to participate in the study. But they found that of those who volunteered to participate in the study and do this, you know, sequencing of their DNA, they found that 88% of them had some kind of variant in a gene that has coding related to connective tissue. So they don't all have connective tissue disorders by any means, but by far, the majority of them had a variant, and we don't know how significant these variants are. So you can have a variant of a gene that then codes for a protein where it doesn't really change the protein, the protein is the same. Or you can have a variant that changes the protein and the outcome is going to be very dramatically different. But that's a really fascinating study, because looking at, you know, at the whole company and seeing that that many of them had some kind of a variant is, is an unusual finding.

Loren  5:06  
This is something that we've sort of danced around in previous conversations, but we've never really addressed it directly, and that's what we want to talk about today. When you look at two hypermobile dancers with similar bodies and similar training. How can one dancer build a 20 year long career and the other dancer is in chronic pain by the age of 16 and has to stop dancing? What's the difference? 

Dr Linda Bluestein  5:32  
Yeah, it's interesting that you put in the part about similar bodies, because if one of those dancers is able to build more muscle mass, that's going to be very protective. We have the different, you know, genetic things that we're born with, and different ways that our bodies are built, and some people are able to build muscle mass, and other people are just, no matter how hard they try, it's really hard for them to do that. So if they're equal in that regard, then other things that we would look at would be things like family history. If one of those two dancers has parents that have had a lot of injuries and they're slow to heal and or they have chronic pain, they've been diagnosed with fibromyalgia, they have early onset osteoarthritis, they have GI symptoms, whatever, I would be a lot more worried about that dancer than the other dancer. Whose parents are, you know, both still able to work full time, if that's what they were doing, and able to really, you know, function at a high level. 

Dr Linda Bluestein  6:31  
Now, of course, you know, you can get a, what's called a de novo mutation, meaning that the mutation doesn't necessarily come from your parents. You it could just come, you know, spontaneously. But in general, looking at family members is super helpful, whether it's siblings parents, but even within families, I've talked to people where, you know, one sibling is a principal dancer at a top ballet company, and the other sibling is, you know, in a lot of pain, having a lot of symptoms and a lot of problems. And you know, we need to study this more to see, well, what's the difference between those two people? Because if they have the same two parents, you know, yeah, they're going to be genetically different from each other. But we know from watching, what is it, CSI, or whatever on TV, right, where they're trying to find the criminal like siblings share a lot of genetics in general. 

Loren  7:21  
And so in your opinion, could dance teachers address this in their class, or does it sort of go above what a dance teacher can do or help with?

Dr Linda Bluestein  7:32  
 Right, right, so what I love about dance teachers is they know their students, and if they know their students personality, and you know, kind of their, their tendencies I worry a lot about, you know, the quiet dancer who maybe doesn't really say much, or maybe they'll tell their friends, this, this, this other thing, are in pain, but then they'll continue to go, take class, do, do everything, and continue to push through the pain. You know, dance, acro, all of these things, right? Circus, like we're used to being in pain, so it can be really hard to determine what pain is actually an indicator of damage happening in the body and what pain is. You know, we're working on muscles and we're getting stronger. 

Dr Linda Bluestein  8:11  
So I think if, if dance teachers and acro teachers can really, you know, know, their students on a level where they, you know, can really understand, like, what's their personality like? And are they somebody who feels everything in their body, and like me, feels everything in their body and is going to be aware of things, maybe at a lower level, or is it somebody who, you know doesn't really feel much, so if they say something like, okay, that's that's a big red flag, like this person is now saying something not to, not to discriminate against the people like me who feel everything. But you know, we want to just kind of factor that into consideration what the person's what the person's sensations are like in their own body. Because we're all different in that regard.

Loren  8:56  
Another question that I have, or that I'd like to delve into a little bit deeper is you introduced the red light, yellow light, green light, framework before. So for a teacher who's watching a student or might have their eye on a certain student, what are the yellow light signals that most people are ignoring or misreading as normal?

Dr Linda Bluestein  9:20  
Yeah, most people are not paying attention to overuse injuries. So they're, they're kind of the nagging, you know, just, you know, persistent, not really getting better, not really getting worse, definitely, if it's getting worse, then that's, that's red light. You got to really pay attention to that. But if it's just, you know, say, for example, it's ankle pain, you know, if there, if there was a clear cut sprain that happened, you know, a couple months ago, and it's, it's going in the right direction that's very different from, you know, you don't really know where it came from. It just kind of came on insidiously without any trauma. And it's just kind of nagging lingering. You've worked on their technique. You've really looked to see, is there anything that they can be improved?

Dr Linda Bluestein  10:00  
In their in their technique at all, and you haven't really found anything that way, but it just continues to to linger, and they probably should get evaluated by a physical therapist and or a sports medicine doctor, rather than just continuing to to dance on it and just hope for the best.

Loren  10:17  
And I know you've talked before about the danger of hanging out in the joints instead of using muscles. Can you tell us a little bit about what that looks like, specifically in dancers, where they are already working at such extreme ranges? 

Dr Linda Bluestein  10:34  
Yeah. So, so I noticed this, I would say the most when they're, you know, in the center, and they're in the back of the room, and they're kind of just hanging out, and they don't think anyone's watching them, right? So, so you can just literally see that they're maybe they're their back has like an exaggerated curve. So we all have this lordotic curve. We should have a lordotic curve, and our lower back that kind of curves inward towards the belly button, and instead of having a little bit of that, they're kind of, like hanging on, that they're hanging on their pelvis, their knees are hyper extended and and they're and they're kind of their upper body is not really engaged either, versus the dancer who is able to have like a little micro bend in their knees, their pelvis is in a little bit more of A neutral alignment, and they're able to support their body even when they're not doing the combination. So it could be because maybe they have fatigue and they're just they're just so exhausted, or they're not adequately hydrated. Their muscles aren't strong enough to support them, so that they end up just, you know, hanging on their ligaments, which connect bone to bone, or their tendons, which connect muscle to bone.

Loren  11:44  
And this might relate a little bit to that, but we talked a little bit about proprioception in a few episodes. I think it's really important that we touch on it. Again. Is there something practical that a teacher can introduce into a regular class, not a clinical setting, but something that would help the dancer make a difference, especially for the hyper mobile student. 

Dr Linda Bluestein  12:08  
I love this question, and I will tell you why. So proprioception, or knowing where the body is in space without looking, is critically important. So if a dancer is listening to this right now and they're like, Well, I know, I think my proprioception is fine if you keep getting the same cues over and over and over again, they keep telling you don't hyper extend your elbow, for example, and you keep thinking, I'm not. I'm not. Maybe it's your proprioception. Maybe it's not that you forget. Maybe you just can't really feel it. So if your proprioception is sub optimal, a number of things can happen. 

Dr Linda Bluestein  12:38  
One, you can get injured because you're not aware of where your joints are in space, and you go into ranges of motion that you really shouldn't be going into. And two, you can end up at a higher risk of like, colliding with people in the studio or on stage or something, because you're just not as aware of like your surroundings either. The best thing for proprioception that for teachers to use is external objects. So it could be, it could be, like a like a ball, or, you know, bands or or anything that would be that would like, kind of give them some extra sensation. So whether it's in the in the clinic, I would recommend that people use, like compression sleeves and and things like that. But in a teaching type setting, I would say, if you're able to incorporate any other kind of objects that would help that dancer connect with their own body, because that object kind of introduces a different way of the body perceiving motion and the sensation and things like that. So you know, if you can, if you can, if you can think of different ways that you can incorporate those kind of objects, I think that would really help a lot of the hypermobile students.

Loren  13:48  
Have you ever taken a picture of someone, you know, they don't believe you. They think they're in the right position. But then, have you ever showed them, you know, and then, sort of a light bulb went on that they were, 

Dr Linda Bluestein  13:59  
Oh yes, all the time. So I've given presentations to large groups of students, and I will have them, I'll say, Well, look here, we're going to do a port de bras Alcon. Okay, now I want you to close your eyes, and I want you to bend your elbows to 90 degrees, and then I want you to open your eyes and see and and usually there's a number of people in the room who are nowhere near 90 degrees. 

Dr Linda Bluestein  14:19  
And, I mean, that's a simple little thing, and it's not like there's any study that shows that that's an accurate way of measuring someone's proprioception, but it's just a simple little thing that you can do to kind of like, oh, that's what you mean by proprioception, like being able to feel where that is because, for example, shoulders, which are inherently unstable joint, they sub Lux very easily. It's very easy for the head of the humerus to slide forward and kind of start sliding out of the socket. And if you can't feel that when it's coming forward like that, then you're not going to be able to feel it, to get it into, you know, more optimal position, and try to have the most optimal function of your arms, for example, which, of course, you need for acro and dance and everything. So you need to be able to feel where your joints are in space without looking. But when you have hyperextension, hyper flexibility, your ligaments and tendons are just they don't have the same kind of sensation and receptors and things. So you just don't have that same level of awareness very often.

Loren  15:15  
Dr Bluestein, you mentioned about pain and dancers and acro dancers, performers in the circus that we get used to the pain, if dancers are used to the pain that they often feel, and they're not listening to their bodies the way they should, how could a teacher help them shift that culture in a studio without making students anxious or fearful of movement.

Dr Linda Bluestein  15:43  
Yeah, that's the tough thing, because they may have some privates with their students, but they also might be dealing with a class of 20 different students who have very different needs, very different bodies, etc. So that definitely can be very, very, very challenging. So I think that probably the best thing to do is to be able to have those educate those dancers, and, you know, refer them to the bendy bodies podcast, because we talk about these kind of things a lot, and so that they are able to start paying attention to their body in the way that, like a reporter might report on, you know, a crime that they just saw, or something that try To think of your body and try to pay attention in an objective way, and try not to go into that anxious place, because it's also important to pay attention to correlations with things. And the best way to do that is if you stay in that like more objective reporter type mode than if you get into that anxious mode.

Loren  16:39  
Good advice. Great. Is there anything that has come up in your work recently that made you think acro teachers specifically need to know about it, or particular to the nature of acrobatic work that's different from dance?

Dr Linda Bluestein  16:56  
Yeah, I love acro. I think it's so amazing and and so cool. And I think that so many people can gain skills from this. I met with a patient the other day who's 16 years old. She had to stop dancing because of her pain and other symptoms, but she's still doing some silks and some other things like that, and she really, really loves it. And she actually had a really nice amount of muscle mass. And we did a physical exam and everything, and I reassured her that, you know, paying attention to where she is in her range of motion and things like that, I want her to keep doing the things that feel good in her body. 

Dr Linda Bluestein  17:31  
And, you know, again, like, I'm glad that you asked that question of like, getting fearful and anxious, because we don't want to make people more anxious, of course, because fear and anxiety and pain becomes a, you know, a perpetuating cycle. So we can have pain, but maybe there's nothing wrong, but we can also have something wrong and not feel pain. So it's not an exact correlation. So that's where we need to pay attention, also to trajectories over time, or how, how our body has felt over time. You know, did we do something today? And it felt great today, but then the next day it feels horrible.

Dr Linda Bluestein  18:06  
Well, maybe we can try to catch it sooner next time. So for those acro teachers to be able to really be thinking about their students and educating their students that you know, it's your body only you know what it feels like, and it's your responsibility to really, you know, listen to those internal cues. Don't panic like your body, your body's talking to you. So pain is a way of the body asking for a change. It could be a subtle change or it could be a significant change, but it's telling you something's going on, and I want you to do something about it. It's a way of trying to get your attention. 

Loren  18:41  
I love that pain is the body's way of asking for a change. Sometimes it doesn't have to be big, but we need to pay attention to it. 

Loren  18:51  
And I think for all teachers, dance teachers, acro teachers, that's a great thing to start having your students know about so that they can start communicating about it as well. And I know that parents are sometimes the biggest barrier, or they're the biggest advocate for their child. What do you wish teachers knew about having a conversation with a parent who is resistant to getting their child evaluated.

Dr Linda Bluestein  19:23  
Yeah, not only is that a tough one, this has happened where I've given a talk, and I've had teachers come up to me afterwards and said, I'm concerned about a particular student, and I've tried talking to their parents, and the parents are resistant, not at all concerned. That's really, really tough. And of course, the age of the student also matters, you know, quite significantly, because if you're dealing with a six year old, that's very different than a 16 year old, of course, right? Because you can educate the 16 year old and try to help them advocate for themselves with the parents. Because everyone's very different. Some people are very anti

Dr Linda Bluestein  19:59  
You know, going to the doctor for anything. They just don't want to, they don't want to go, they don't want their kid to go, and other people are running in for every little thing, and there's everything in between, right? So it's really, it's really hard. And of course, the dance teachers, the acro teachers, like they're dealing with all of it, right? They're, you know, it's amazing what they're, what they're able to to handle. 

Dr Linda Bluestein  20:16  
But I think when it comes to parents who are on the more resistant side, if there's somebody else in that person's life. So maybe talking to the student and saying, Do you have an aunt or an uncle, or somebody who you're close to, who you might be able to talk to about this? And maybe they could help you advocate for yourself. Maybe they could. Maybe they're not the legal guardian, but maybe they can help you have a conversation with your parents, and maybe they can help your parents understand that this is a significant problem, and if we don't address it sooner rather than later, it's going to snowball and become a much bigger problem. Maybe we can deal with it now, while it's not as big of a problem.

Loren  20:56  
In your experience, is there a harm in over diagnosing hypermobility?

Dr Linda Bluestein  21:03  
I'm smiling as you're saying that, because in in my opinion, it all depends on who you're going to go see. So I love seeing professional dancers, elite dancers, elite athletes, you know, young people, people who are, you know, still capable of high level activities, as well as seeing people who are, you know, in very serious condition and really having a lot of difficulty, I like seeing the whole spectrum. And when I see people who are in that, you know, less severe state, I'll talk to them about, you know, the the value of having a diagnosis, and also the downsides of having a diagnosis, and whether we do the diagnosis or not. If I'm seeing you as a patient, I can make the diagnosis, of course, but whether we actually establish the diagnosis or not, I feel like it's never too soon to get the information. 

Dr Linda Bluestein  21:54  
It's never too soon to learn how to take better care of your body, how to select your studio carefully. This is so important. I have talked to so many dancers where they might be going to a studio and they're like, Yeah, I don't know. I feel like they're maybe not doing, you know, taking our interests in as seriously as they should be, like they're they're doing some things that maybe the mom that I think of a particular person I saw recently, and the mom was like, Yeah, I feel like maybe they're a little cavalier with with things that trust your instincts, you know, maybe start looking around see, maybe, maybe there is another studio that's a better fit. It's really, really important to have that information. 

Dr Linda Bluestein  22:33  
This, this young dancer, 12 years old, already has had, you know, multiple serious injuries. And you know, you don't want to have regrets five years from now that, you know, I kind of knew something was off back when she was 12. You know, you just, you really want to be proactive about those kinds of things, because the studio that they're in, the teacher that they're working with, is hugely impactful. So in my opinion, it's never too soon I have though had people say to me that they've seen other people and that that other person has said, Oh no, no, no, you should never, ever dance again. You should wrap yourself up in a bubble. You're only going to get worse. And I just that's not my personal belief, because I personally have gotten my own body much better, and I have quite a few patients who have gotten significantly better when I've been working with them. I wish I could say that every single person has gotten better, but, you know, of course, everyone's different, so that's, you know, never going to be the case, but I've been able to get so many people functioning at a higher level, so I feel like it's never too soon.

Loren  23:35  
And if you could leave every acro teacher, dance teacher who's listening today with one thing to do differently starting this week. What would it be? 

Dr Linda Bluestein  23:45  
I would say what I just said about parents. Trust your instincts, especially if you've been doing this for a while, right? You know your dancers, your acro students. You know how their bodies are moving in space. You know how coordinated or uncoordinated there they are, how connected or how disjointed their body seems. So trust your instincts. If you're worried about a particular student, then, you know, don't just hold that to yourself. Try to advocate for that student, whether it's with the parents or, you know, through the student with some other family member or whoever it might be, you know, really try to do what you can, because you are often the very first person who's going to recognize this in someone.

Loren  24:30  
And just to touch base back on when flexibility becomes instability. How do you as a dance teacher, how do you see that? Or how would that come across to you when the flexibility is there, but then how do you know it's going too far? 

Dr Linda Bluestein  24:46  
Yeah, so I'm picturing, I was watching a ballet class a number of years ago, and there was this one dancer who her scapulae were just like all over the place. 

Dr Linda Bluestein  24:57  
She She was gorgeous, and she had she was incredibly flexible, but you could just tell that she just, she just couldn't control her body. And you know, instability has more to do with the body's ability to keep a joint in proper alignment, whereas hypermobility has to do with range of motion. You can have a lot of range of motion, but not really have much in the way of instability. Or you can have a lot of instability, or you can have both. So basically, looking to see, you know, does it seem like they can control where their body goes, or does it seem like their body goes where their body's going to go?

Loren  25:32  
Dr Linda Bluestein, can you tell us you've given us so much information again. Can you tell everyone where to find you how to follow your work and how to access the bendy bulletins. 

Dr Linda Bluestein  25:44  
Yes, absolutely. So my website is hypermobility, md.com, and I also have a website, bendy bodies podcast com, and my bendy bodies podcast comes out every Thursday, early in the morning, and I have a lot of different guests on there. We've had a lot of great conversations, and so I hope people will enjoy that. And then I also have my bendy bulletins, which are on sub stack. This is my newsletter on on the sub stack website. So that's hypermobility. MD, dot sub stack.com and people can check out my information there as well. 

Dr Linda Bluestein  26:20  
And I love hearing from listeners and followers, because when they tell me, you know I want to know about XYZ, or they ask a certain question, that really helps me to know what are the things that people want to know about, and it helps me guide future episodes and future conversations, etc. 

Loren  26:36  
Fantastic. We'll make sure we include all your information in the show notes, as always. Dr. Linda Bluestein, thank you so much for taking the time to speak with me today. 

Dr Linda Bluestein  26:46  
Of course, thank you so much for having me. I really enjoyed chatting with you as always.

Loren  27:01  
If you enjoyed today's conversation, be sure to subscribe and follow so you never miss an episode. And if you know a dance teacher, student or parent who would love to hear this discussion, send it their way. Sharing the show is one of the best ways to support the podcast.

Loren  27:19  
Until next time, find power in your strength, freedom in your flexibility, and know that we are here to support you on your acro journey.

Loren  27:31  
Thanks for listening, everyone, and have a great day!