11. Understanding Hypermobility Disorders with Linda Bluestein, M.D.

Episodes have been transcribed to improve the accessibility of this information. Our best attempts have been made to ensure accuracy,  however, if you discover a possible error please notify us at info@bendybodies.org

00:00:00 

Jennifer Milner 

Welcome to bendy bodies with the hypermobility MD. This is your guest cohost Jennifer Milner here today to  interview the founder and host of bendy bodies podcast. Dr. Linda Bluestein. Dr. Bluestein is a former ballet  dancer, integrative medicine, physician, and board certified anesthesiologist who specializes in hyper-mobility  disorders. She's also the founder and former co-host of the podcast hypermobility happy hour, and as a  contributing author for the book disjointed navigating the diagnosis and management of hypermobile Ehlers Danlos syndrome and hypermobility spectrum disorders. Dr. Bluestein and I have been working together in the  hypermobility field for a few years now, presenting an I Adams and sharing clients, and now working together  on this podcast that she found it.  

00:01:01 

Jennifer Milner 

So welcome to your own podcast. I thought that it would be great for the listeners to hear from you because as  much as we have experts on in their own fields, you are hands down as well, an expert in this field and have so  much information to get out there. I wanted people to hear from you. How did you make the leap from dancer to  doctor, to hypermobility specialist?  

00:01:29 

Dr. Bluestein 

That is an interesting question. I did really want to be a professional ballet dancer. That was absolutely my  dream. I fell in love with ballet from the very first time I went to a performance like so many other people, of  course, and had started having quite a few injuries and other health problems that, in high school made me  realize that I needed to come up with a plan B and I had also always been interested in science and medicine. I  chose my undergrad university, I chose UC Irvine, which has an excellent dance program early on. I wanted to  do, as I was finishing up medical school. I knew that I wanted to work with dancers, but I also, at that time  thought the only path for that was to do orthopedics. Even though I didn't know why I was having so many joint  problems at that time, I knew that I could not do orthopedics. 

00:02:20 

Dr. Bluestein 

I knew that my body would not be able to handle the physical requirements. I did a 20 plus year detour into  anesthesiology. I started having some more health problems, had some pretty major surgeries, including some  bone grafting surgeries and spine surgery. That led to my discovery of Ehlers Danlos syndromes and the  realization that this is an area of tremendous need. I started writing about it, researching it, speaking about it,  taking care of patients and basically doing everything that I can to help as many people as possible with these  really complicated and difficult to understand disorders.  

00:03:07 

Jennifer Milner 

Excellent. So your own misfortune is our gain. 

00:03:15 

Dr. Bluestein 

Because at the time I remember when I had the bone grafting surgery, that was the last problem that I had and I  was working in the operating room. This was not that many years ago. And I was devastated. You think of all  the years that it takes to train, to be anesthesiologist. It was really hard for me for a very long time to say that I  could no longer practice as anesthesiologist, but it's, I use this example all the time with my patients that so  often the thing that is the worst possible thing we can imagine at that time turns out to be the best possible thing.  I never, in a million years could have pictured myself being in a position where I could impact so many more  people as anesthesiologist. I was taking care of one person at a time, and now I have the ability to impact so  many more people's lives.  

00:04:02 

Jennifer Milner 

So it's, it really was a gift. I know that sounds probably really cliche, but it is true.  

00:04:07 

Jennifer Milner 

Well, that is true. It's great to look at the things that are put in your life, that challenge you as something that you  can turn into the things that you can use to bless other people. So I love that story. Details here, there, the word  hypermobility is thrown around so much. I know that there are so many different types out there. What are the  different types that you can encounter? What is there beyond just being bendy?  

00:04:35 

Dr. Bluestein 

Let's just start with some very brief definitions. Joint hypermobility just means simply that joint has a greater  than average range of motion. That's literally all that means a hyper-mobility disorder or some people say  hypermobility syndrome means that a person has joint hypermobility and has symptoms. Joint hypermobility all  by itself is not necessarily a problem. It can be associated with other things, but that's why it's critically  important. Are they bendy, but they're otherwise perfectly fine and have no other symptoms or are they bendy?  And have other, excuse me, I just said other symptoms, are they bendy and have some symptoms that may be  related to that? And actually this is a good time to just mention very quickly symptoms versus signs. Symptoms  are things that a person feels within their body, headaches, dizziness, nausea, vomiting, those are symptoms  signs, or things that other people can see like a rash or that can be measured like blood pressure and things like  that.  

00:05:35 

Dr. Bluestein 

Joint hypermobility simply refers to range of motion and hyper-mobility disorders is a very large umbrella that  refers to people that have symptoms or signs and or science related to this type of picture. We're going to talk  later. I know about, well, do you even have to bendy? And this is where it gets really confusing and  complicated. It comes to joint hypermobility, you can have several different types. If you have, let's say you  have hypermobile shoulders and that's it that's considered localized joint hypermobility. And that would be  abbreviated. LJ H if you have hypermobility just in your fingers and toes, that's called peripheral joint  hypermobility. If you have hypermobility in generally we consider five or more joints, that's generalized joint  hypermobility, and that's abbreviated GJH. The key thing to know about generalized joint hypermobility is a lot of times when people are talking about joint hypermobility, they're not specifying the generalized type that we're  talking.  

00:06:44 

Dr. Bluestein 

Usually when we talk about, hypermobility, we're kind of thinking of this group of people that have lots of  bendy joints. That's why I like to start with like, just by itself, that only means that there is a joint that's hyper  mobile. When we talk about generalized joint hypermobility, these people are hypermobile in lots of different  places. The challenge is that there's different scoring systems out there. None of them are perfect. The ones that  are more simple and easier to use also can miss a lot of cases. My favorite scoring tool probably is the five point  questionnaire, which came out in 2003 and that takes into account historical information. So that's really  important to know. In 2017, the international consortium on Ehlers Danlos syndrome and related disorders, they  came out with new classifications for these syndromes. Not everyone who's bendy has a connective tissue  disorder, but some will.  

00:07:47 

Dr. Bluestein 

What that means is that people can bendy for a wide variety of reasons. It could be due to the shape of the  bones. It could be due to the strength of the connective tissue. It could be due to, muscle tone, a white, certain  races tend to have more Bendis than other races. It comes to having a connective tissue disorder, so that means  that just me, the reason why people are bendy is because their connective tissue is weak. The collagen, the  things that make up our ligaments, our tendons muscles, all of these different parts of the body, if those are weak  and we have a connective tissue disorder, then the most common connective tissue disorder is the Ehlers Danlos  syndromes. In 2017, they defined these much more. Clearly there was a lot of confusion going up to that point.  Now we know that there are at this point anyway, there's 14 different subtypes of EDS, the challenges that the  most common type, the hypermobile type does not have a molecular marker.  

00:08:54 

Dr. Bluestein 

What that means that there's no blood test for that. There's no genetic test for that. That's what comprises the  most common of the Ehlers-Danlos syndromes. There's other types of connective tissue disorders that fall under  there, but that's kind of the general lay of the land.  

00:09:12 

Jennifer Milner 

Interesting. You could have the trick shoulder that you take out at parties and have no other issues going on with  your body and be totally fine. Or you could have hypermobility in several different joints and still be totally fine  and have no symptoms or signs of something else going on within your body.  

00:09:38 

Dr. Bluestein 

Right? Exactly. I'm glad you brought up party tricks right away, or circus tricks, whatever party tricks. If you  are a contortionists or, you work for Cirque de Solei, you are, you're want to work for surface alive. Perhaps  that's something that, you're going to continue to do your training for those kinds of things, but for the average  person, even for a dancer, those types of maneuvers where you really are getting the joint out of alignment and  putting it back in you really want to control that a lot better, especially for what it is that you want to do. I used  to do party tricks all the time. Now when I look at it from my lens of, a few more years down the road, I think  back, and I think I really wish I didn't do that so much. I tell my patients, I ask them, especially if they don't  already have a diagnosis of EDS.  

00:10:39 

Dr. Bluestein 

I suspect that they have EDS, I ask them to show me their party tricks, videotape them. I take photos, et cetera,  and I document them. I say, please don't do those anymore. Again if it's necessary for your profession, that's  different. If you're, if again, think about what your, I always try to ask people to think about what their goals are.  If your goals are to be a classical ballet dancer, then your training that's going to be appropriate for your body is  going to be very different than if your goal is to be in Cirque de Solei. I think it's really important for people to  be aware that all of these things are potentially beneficial because you need to have a certain amount of  flexibility and range of motion in these various different, athletic and endeavors. At the same time, they do come  with a risk. 

00:11:30 

Dr. Bluestein 

Just because it's not painful now, doesn't mean that it won't be painful in the future. My whole goal is to help  younger people stay as active as they can and avoid having chronic pain later on in the future. It can be very  challenging because they, if your body feels good, it obviously you're going to have a different approach, but  most people have had at least some injury. They are more open to this type of information.  

00:12:03 

Jennifer Milner 

Yes. That, it's great to talk about discovering it, or, acknowledging it as a young person and saying, what can we  do now to support you so that you don't have pain later on if the reason you're coming in is not because you've  already gotten to the point of pain. Right.  

00:12:21 

Dr. Bluestein 

Right. Exactly. I want, I want people to not need me or somebody like me. Yeah. I would like to put myself  completely out of business and other people that are doing things like me by having a lot less chronic pain in the  future. Yes definitely. Yes.  

00:12:36 

Jennifer Milner 

And I, I love that too. So, so you've talked about flexibility here and the different degrees of flexibility in the  party tricks, and how they can all lead to bigger issues of hypermobility syndrome, disorder, or EDS. If someone  isn't super flexible, does that mean they are eliminated from the possibility of having a hyper-mobility disorder?  

00:13:00 

Dr. Bluestein 

As from working with the dancers, everybody that you work with and all the programs that you've developed,  flexibility has so much to do with muscle and fascia. A lot of other things besides just the joint, which a joint is  any place where two or more bones come together. The range of motion of a joint can be limited due to a lack of  flexibility of the soft tissues. Flexibility and hypermobility or hypomobility are definitely separate things. The  challenging thing is that for most of the different scoring systems that have been developed, they don't take that  into consideration. For example, the Biden score, which is the one that's most frequently used it actually, you're  not really supposed to take into account if a person has had an injury or surgery. Well once a person has had  surgery on a joint that dramatically changes the range of motion of that joint.  

00:14:01 

Dr. Bluestein 

Yeah, and I remember when I had surgery, I trained at the Mayo clinic and I went back there for surgery. I  actually, believe it or not, you can actually do this. I did it on a dance floor. I collided with someone and I  dislocated my owner nerve. I didn't know you could do that, but apparently you can. I tour what's called the  retina curriculum and because of my weak connective tissue. At that time, I did not know that I had EDS and I  did not understand why I got injured so easily. I asked my doctors, why do I get injured so easily? But they said,  you're fine. Anyway, so I, I had that injury. I went to Mayo clinic and they, my orthopedic surgeon at Mayo  clinic measured my range of motion of both of my elbows and said, wow, you're super bendy. By the way, after  this surgery, you will lose that hyperextension of your elbows or your elbow, I should say, on the side that they  were operating on.  

00:14:56 

Dr. Bluestein 

They never said what the significance of that was. They didn't check for bending us anywhere else. I had no idea  at that time, what that meant, no clue whatsoever, but now that elbow does not hyperextend, technically  speaking, I've lost that point on the bike and scale. That's a problem, so, and especially to me, the biggest  problem is that the criteria for, and I know you and I both use the worksheet from the Ehlers-Danlos society,  which, they really did do a very good job of trying to put this together into like a concise document that people  like primary care providers could look at and try to sort out, does this diagnosis apply to this person, but the  challenge is it starts with the bite and score. If you're an older person and it had multiple injuries and things like  that, maybe you were super bendy when you were younger and that has contributed to your lifelong history of  problems, but now you're not bending anymore. 

00:15:57 

Dr. Bluestein 

So it is really complicated. Most clinicians are seeing lots of different types of problems, and they need to know  about a wide variety of problems, and they are seeing these patients in their practice, but they may or may not be  recognizing it. Once you start to see these conditions, you cannot unsee them. Once I started to really  understand, that's why I try to educate as many clinicians as I can, because if they open their eyes to it just then  they will realize that an under having an understanding of these hyper-mobility disorders will actually make  managing these patients easier, not harder. Right. So digressed, sorry.  

00:16:41 

Jennifer Milner 

No, you didn't, because it's important. It's so hard to find that one person that can actually see you and really see  you and to know where to go from there. We're going to talk more about that, in because it's, so it can be so  frustrating and feel like you're completely alone. You mentioned just going back you mentioned earlier, you  acknowledge that dancers and acrobats and contortionists do have some things that they have to do for their, for  themselves, for their job. How do if you're one of those bendy people? How do if you have like the good or safe  hypermobility with the pretty lines, or if you have a bad or difficult hypermobility, so what kind of, what signs  should someone be looking for? So,  

00:17:30 

Dr. Bluestein 

Definitely being more hypermobile is beneficial in certain professions. It's, I would say it's more a matter of, are  you able to manage whatever the underlying reason is, why you're hyper mobile in the first place? So for  example, I don't know how many listeners will have heard my episode with Valerie from Cirque de Solei on  hypermobility happy hour. If people have not heard it would be great to go and listen to that episode, I met her  at I Adams in Montreal, and she has a sister that has an EDS diagnosis. She said, I know I probably have EDS  also, but I can manage it because circus LA is really proactive in terms of risk reduction with their athletes and  has really helped her to while maintaining this incredible range of motion, also build a lot of strength into it and  optimizing alignment and things like that.  

00:18:31 

Dr. Bluestein 

I tend to think of hypermobility being itself, not necessarily a good or bad, because it depends on what you're  doing. I think that instability is the thing that is, pretty much always not ideal, especially if you're not doing  something like, contortion ism. And, and that's where building strength into the body is so important. I love  when you and I spoke with Maren McCormick, and she said that building strength into the body is just the,  benefits the dancer at every age throughout their lifespan. In terms of, bad versus, problematic hypermobility, I  say that very much depends on muscle strength, but in terms of knowing whether or not a person has a  connective tissue disorder, there are three hallmarks of connective tissue disorders. The first one is the loose  joints. The second one is stretchy skin and the third one is fragile tissues. If you have loose joints, but your skin  isn't stretchy and your tissues aren't fragile, then that's much better than if you have all three of those things.  

00:19:46 

Dr. Bluestein 

If you have all three of those things, that's when I think, you probably should consider that, well maybe there is  an underlying connective tissue disorder going on and that's what explains the loose joints.  

00:19:57 

Jennifer Milner 

You say fragile tissues, are you talking about you bruise easily or you scar easily, or you heal slowly? What  things are you talking about?  

00:20:05 

Dr. Bluestein 

All of those. Okay. You hit the nail on the head with a lot of those. Yes, I, when I look at my patients, I really, if  they've had any kind of surgeries, I definitely like to look at how well they scarf, because some will develop  these really widened scars. Some will have, tissue breakdown that they won't really, heal properly at all. There  are certain things like we talked earlier about the different types of Ehlers Danlos syndrome and the vascular  type is one that's very important to be aware of. If people have the vascular type of Ehlers Danlos syndrome, they actually aren't necessarily as bendy as some of the other types, but they do have a lot more fragile blood  vessels. They will have a lot of problems with bleeding and a lot of problems with ex really excessive bruising.  It's very common to have bruising with the other, things under the umbrella.  

00:21:01 

Dr. Bluestein 

Abnormal bruising is definitely quite common. In terms of like quite significant bleeding, that's something that  definitely needs to be brought to the attention of a healthcare professional, because that might indicate  something more serious. Yeah, you hit the nail on the head for all of those. I think looking at scars tends to be  very interesting.  

00:21:24 

Jennifer Milner 

So, so if someone has found that they kind of tick all the boxes here that we've talked about and, seem feel like  they're leaning towards a hypermobility spectrum disorder, as they're sitting in their chair freaking out, is there a  cure for hypermobility spectrum disorders?  

00:21:45 

Dr. Bluestein 

There's not a cure per se, but I would say that the important thing to know is that there are so many things that  can be done to manage symptoms. A couple of important things to know, number one, the exact label is not as  important as the symptoms that the person is dealing with, and those can change over time. It's very important to have your healthcare team address, whatever symptoms that you're dealing with and work best on solutions for  those symptoms and working on getting those improved. There's so much that can be done. I've just, I'm amazed  at how much improvement I've seen in a lot of my patients, but especially when we catch things sooner. That's  why it's so important for people to be aware of these disorders as early as possible, so that they can take steps to  improve their quality of life, because a lot of what they can do, they don't need a doctor to help them with,  

00:22:47 

Jennifer Milner 

Okay. If there's no cure for, hypermobility spectrum disorder, is there a benefit to getting a diagnosis?  

00:22:56 

Dr. Bluestein 

There definitely is because I would say that for when other healthcare professionals are treating someone, if they  see that on the list of diagnoses, then it may help guide their care of that person. Hopefully as more and more  clinicians become aware of these disorders, more and more people will recognize the significance of seeing that  on the list. While we're on this topic, I do want to just explain very briefly what hypermobility spectrum  disorders are in 2017 when the international consortium on Ehlers Danlos, syndromes and related disorders,  when they came up with the new criteria and new classifications for in particular, they really addressed  hypermobile EDS. Very specifically, they really tightened up the criteria for hypermobile EDS. They did that in  part because they really want to find the genetic marker for hypermobile EDS. This is a very important thing to  do because that way, instead of this being, this person's opinion or that person's opinion, we can say we've done  a genetic analysis.  

00:24:02 

Dr. Bluestein 

We know for sure that you have this, and this does affect a lot of people because we know that this is the biggest  category. They introduced this new category hypermobility spectrum disorder. That for people who do not have  hypermobile EDS, that they would have still would have a diagnosis that would help to explain the constellation  

of symptoms that they had. I think that there's still definitely a benefit to getting a diagnosis. I think a lot of  patients that I see in my practice and a lot of people that I just speak to elsewhere, a lot of people think that this  is a lesser than diagnosis, hypermobility spectrum disorders. This is a great opportunity to explain that is  absolutely not the case. People who work with these patients all the time, myself included know that there are  people who have hypermobile EDS that are, have a much higher quality of life than people who, for a number of  reasons have been given the diagnosis of hypermobility spectrum disorder.  

00:25:09 

Dr. Bluestein 

A person can also kind of travel up and down that spectrum over their lifetime. It's, this is all a very challenging space because it's really changing quite rapidly. I'm sure my answers to a lot of these questions will be very  different a couple of years from now, but at this point in time, the main thing that we know is that it's just really  important to recognize this bigger picture, because there's so much that can be done to manage your symptoms,  manage your healthcare. While there's not a cure, there are so many therapeutic options available. Having that  hope is critically important because our mindset has so much to do with how our body feels. The other things  that therapies that we will be doing are greatly impact, but impacted by our mental thought process going into it.  

00:26:10 

Dr. Bluestein 

Absolutely. I think that's something we're going to get into, later as well. This has been incredibly helpful  information for me and I'm sure for everyone who has been listening. I am so grateful for you having this  conversation with me today. If you would like to hear more, we are going to continue this conversation and go a  little more in depth on some of these things, in our next episode. For today you had been listening to bendy  bodies with the hypermobility MD. Our guest has been the host of hypermobility MD, Linda Bluestein, that's it  for today, but we have lots coming up. So please stay tuned.  

00:26:46 

Jennifer Milner 

Thank you. If you've enjoyed this program, please like share, subscribe and leave a review. This podcast is for  informational purposes only, and is not a substitute for medical advice. Please see your own medical team prior  to making any changes to your health care. Bendy Body's original music is by Andrew Savino and sound editing  is by Rhett Gill. Thank you so much for tuning in, and we will see you next time on bendy bodies with the  hypermobility MD.