19. Living fully with a Hypermobility Disorder 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 with Dr.  Linda Bluestein, the host of the Bendy Bodies podcast. Welcome back. Thank you for having me last episode.  We covered a lot of ground. We talked about the different types of hypermobility. You kind of explained the  difference between signs and symptoms. How hypermobility in itself is neither good, nor bad, and it's more  instability that we should be looking. You kind of described some of the hallmarks signs of connective tissue  disorders for us, and also covered the value of getting a diagnosis, even if there is no cure for things like EDS.  

00:01:02 

Jennifer Milner 

Today I just want to go deeper into this. If you have a diagnosis of hypermobility spectrum disorder or EDS or  Marfans, what are some of the common issues? The co-morbidities that might go along with that?  

00:01:18 

Dr. Bluestein 

This is a fascinating area because, well, we see lots of different explanations in different places. I'd say the  bottom line is we don't really know for sure why these things tend to travel together, but we do know that people  who have these, bendy musculoskeletal type pictures do also tend to have other conditions that travel along with  this. The first one being dysautonomia, which means abnormal functioning of the automatic nervous system, our  autonomic nervous system. You can think of the autonomic nervous system as controlling the things in your  body that you don't think about. Your heart rate, your blood pressure digestion, your pupil size you're sweating.  It's very much involved in things like temperature regulation. Dysautonomia just means abnormal function of  the autonomic nervous system. We know that people who have these bendy musculoskeletal pictures tend to  have problems with temperature regulation, they get dizzy when they stand up, they might faint more frequently  and there's a lot of different, explanations for these.  

00:02:31 

Dr. Bluestein 

Some of these are related to hormones. Sometimes these things may peak during puberty and then some people,  improve a bit. If they're happening around the time of puberty, that's better than if they're happening at other  times. Because hopefully some of that's going to improve, but there's lots of treatments that can be done for  these dysautonomia conditions as well. That's one thing that comes along with it, or can come along with it.  Another one is mast cell disorders. These are disorders that involve, a type of cell in the body called mast cells in that spelled MAST, and these cells think of mast cells as the primary cells involved in, like allergic type  reactions. Hives flushing, histamine when you release histamine and if you have environmental allergies and,  you start sneezing in the watery eyes and all of those kinds of things.  

00:03:39 

Dr. Bluestein 

People who have these bendy musculoskeletal conditions, we know have a higher incidence of allergic type  phenomena, things like asthma. They also have a higher incidence of some of the other things that come along  with this like flushing or, anaphylaxis, which involves like throat swelling, when you're exposed to things that  would trigger this kind of reaction. The interesting thing about mast cell disorders is that two of the most  common triggers are stress and heat. So and heat also aggravates dysautonomia. The challenge with those three  things is that there's a lot of overlap, so it can be very difficult to tease all of this out. Again, I come down to  what are the main symptoms that you're having? What is the most important thing to address at this point in  time? So right now it could be it's summer. You're having more issues with dizziness and heat tolerance and that  kind of thing.  

00:04:45 

Dr. Bluestein 

If you live in a Northern climate, as winter comes in, that stuff gets better, but you start having more joint pain.  Within a person, they will have different symptoms at different points in time. Those are two things that tend to  go along. Pain is also another really common problem that people can have. It can have different, there's all  kinds of different types of pain that people can have related to, bendy disorders like EDS or hypermobility  spectrum disorder or Marfans. People can actually have all three types of pain, nociceptive pain, neuropathic  pain, and centrally mediated pain. Pain can definitely be a big problem. They can also have gastrointestinal  problems sometimes. Constipation is a big problem or, getting full really quickly when eating, that's called early  satiety. Those can be very challenging to deal with, or food sensitivities. The last thing that I wanted to mention  is autoimmune disorders.  

00:05:46 

Dr. Bluestein 

We know that people who have these conditions do have a higher prevalence of autoimmune disorders like  Hashimoto's thyroiditis, which is when we develop antibodies against our thyroid. We, again, we don't  necessarily understand exactly why this happens, but the good thing is that a lot of the treatments that we would  do for one of these actually benefits the other. For me, my whole goal is try to get to the root cause and try to  address things at a level where you're going to have the least intervention with the most impact. So.  

00:06:24 

Jennifer Milner 

I love that. You and I have talked about this a lot together, and at one point you had told me that, your motto is  kind of, if you can't connect the issues, think connective tissues. Yes. Yes.  

00:06:39 

Dr. Bluestein 

I think that's a really good phrase for people to remember and, I didn't come up with it by the way, but it was, I  know I've heard Dr. Heidi Collins say that. I'm not sure if she's the one who said it first, but I think that's just  such a quick and dirty way of thinking about it, because yes. If you think about it really makes sense. Our  connective tissue is we only have four types of tissue in the body, believe it or not connected tissue being one of  those types. If our connected tissue is faulty, it can affect so many things in the body. We know that there's a  close relationship, even between mass cells and pain. It's, again, once you start seeing these disorders, once you  start understanding and learning about them, you can't unsee them. So, so yes, I'm glad you brought up that  phrase because I think that's a really important thing for people to have.  

00:07:32 

Dr. Bluestein 

I started to say in the back of their minds, but maybe even in the front of it. Yeah.  

00:07:36 

Jennifer Milner 

Well, and if I have a dancer that I suspect might be somewhere on that spectrum, I'll ask them lots of different  questions. Like how do you react to anesthesia? do your joints hurt all the time? Do you feel faint when, just trying to start getting their brains, thinking in that direction and to see them go, Oh yes. Oh gosh. Yes. Oh, I do.  Oh yes. That's when I am, when my scope of practice, encourage them to go see someone to talk to them about  it, but to see the dots connected for the first time, can actually be quite encouraging because you're so  disheartened with all these things going on and nobody's really drawn them all together in one place before.  

00:08:19 

Dr. Bluestein 

Right. I'm so glad that you're asking those questions because this is the challenging thing. We know that these  bendy disorders hyper-mobility disorders, if you take the whole entire umbrella, they're actually quite common.  Some of the things that people have with these disorders, for example, sleep disorder, they might that's more  common in this population. Things like anxiety, depression, there's a lot of things that occur more commonly,  things like, constipation. Some of those are such common things that from a research standpoint, it can be very  hard. You need large numbers. It can be very hard to tease out, how prevalent that is. If you take some of the  things that are much more rare in the general population, like local anesthetic insensitivity, that's a fantastic one  to ask about because if a person says, now that you mentioned it, when I go to the dentist and they inject the  local anesthetic, it doesn't work or it takes a lot longer.  

00:09:23 

Dr. Bluestein 

They need to give me a lot more. That's not something that's super common in the general population. It is likely  to be more specific to these conditions. I love that you're asking those questions and the scarring too, because  the skin is a great window into the body. We can't see most of our connective tissue, but we can see the skin. So  I love and how it reacts. Exactly. Yeah.  

00:09:46 

Jennifer Milner 

When the skin, as you said, gives us so much information with the, allergic reactions and that the way you flush  or, the way that it's elastic or how it scars, there's so much information to be had just from that. If someone starts  to suspect, they might have a hyper-mobility disorder, where do they go? Do they see a geneticist, a  rheumatologist, a cardiologist, how do they find that first doctor?  

00:10:09 

Dr. Bluestein 

So, so that's challenging. I would say number one, I would say number one, it depends on the symptoms that  you're having. Okay. So, so right now it can be very time-consuming to try to figure out, figure some of this out.  I would say that whenever possible, start with your primary care provider, because if you have a good primary  care provider that is so key, they are going to be the hub of your, wheel. You've got all the spokes going out to  all the different specialists and having a good primary care provider is so important if you, I, I hear this all the  time, on, but my primary care provider didn't know what EDS was. I asked people to please be patient with that.  At the same time that people sometimes say, I wish my doctor would just say, I don't know. Sometimes they get  frustrated when they say, I don't know.  

00:11:01 

Dr. Bluestein 

Keep in mind that there is so much more, we are in the age of an information explosion. Even within, my very  narrow scope of practice, it's almost impossible to stay up on everything. It's, if you're a primary care provider,  think of the huge breadth of things that you need to know about, but what's most important is that your primary  

care provider be wanting to help you and are they empathetic and are they non-judgemental, or, and are they  open minded? Now, that being said, it's important that you approach you as a patient, approach them in a way  that shows respect for their time and understands the constraints that they're operating under. For example, I  suggest to people to go to your primary care provider, maybe bring in, an article or something and say, Hey, I  know you're super busy. I know you want to have time to look at this today.  

00:12:01 

Dr. Bluestein 

I was wondering if this might apply to me, my dance coach, Jennifer Milner shared this with me and said that  she thought maybe I should, maybe they should get checked out. Could I schedule another visit to come back  and discuss this with you? And that way you're opening the door for them. You're making it much easier for  them to, look at this information and know that they're also not being judged. Right. I mean, that's, the other  thing is the judging goes both directions. So I think that it's important to approach it in the right way. I would start with the primary care provider if possible. Keep in mind that someone like a geneticist while there are  some geneticists like Dr. Atwal who will do, telemedicine visits for a variety of States. Most geneticists have a  very long wait list. For most people, the geneticist isn't going to test them anyway.  

00:13:02 

Dr. Bluestein 

They're, it's really, fairly a fairly limited population that's the appropriate first person to go to. Rheumatology is  great if you're dealing with a lot of joint pain and if you get to the right rheumatologist, I know for me  personally, the first rheumatologist that I went to just made me feel really bad about myself and really judged  me. It was the second rheumatologist that I went to who made the diagnosis. I had kind of read an article, kind  of knew about it, but really knew very little. It was that second rheumatologist that said, Oh, absolutely, this is  what you have. That's a rheumatology tends to be a good fit for a lot of people. If you're having a lot of, pots or  dysautonomia type symptoms, pots is one of the, subsets of dysautonomia, then that can often be managed by  cardiologist or a neurologist. Because those conditions are kind of a cross between the cardiovascular system  and the neurologic system are both greatly impacted.  

00:14:11 

Dr. Bluestein 

I think it just depends on what kind of symptoms you're having.  

00:14:15 

Jennifer Milner 

That makes sense. I know for me in the dancers I work with, some of them have had great success with their  primary care physician. I will give them the 2017 diagnostic criteria and they have carried it in to see their  pediatrician and said pretty much what you said. It's been suggested I should get myself looked at, this is the  criteria that I could find. There a way that we can talk about this? And the doctors have said, huh, I don't really  know, let me read through this. And let's look at it. A month later have had a diagnosis of EDS and the doctor  has said, all right, let's get you checked out by a cardiologist. Let's get your eyes to, and at that point, the doctor  is doing the research and moving forward and starting to main manage that care for her. So it does work.  

00:15:08 

Jennifer Milner 

You go in respectfully and realistically with what is going to be accomplished in this one session.  

00:15:13 

Dr. Bluestein 

I'm so glad you added that word realistically, because I will tell even for myself, when I have patients that have  realistic expectations, it lowers my own anxiety, because I, I, when people are approaching it that way, I feel  like, okay, we will be able to work as a team here. We both have a similar idea as to the path forward. So I love  that you added that. That's fantastic.  

00:15:46 

Jennifer Milner 

So, we've been to the doctor, we have looked at the comorbidities we have, we've gotten a diagnosis or even just  a, Hey, you're somewhere on that spectrum disorder, we're going to keep an eye on it. What does it mean to live  with it now? You've said there is no cure there's management and there's, preemptive management, I think as  well. What are, what are some of the concrete things that someone can do to try to maintain their quality of life?  

00:16:15 

Dr. Bluestein 

Right. I would say that the first thing too, to make sure that I want to mention is to keep in mind that there's no  cure for most things. Yes, there is no cure for this, but that's true for us, you arthritis, or, I mean, the other forms  of arthritis for the most part, we're kind of managing symptoms with a lot of those other conditions as well.  Great point. Yeah. So, so I, I just think that it's so easy to get discouraged. If we, what we, the things that we  think greatly impact the actual, the physiologic processes that go on in our body. We are more stressed, that  impacts the hormones in our body and can actually, it's a physiologic thing. Changing our mindset can have  huge benefits. So anyway, okay. I have an acronym for the approach that I take acronyms. Yes. Well, it just  makes it easier, to, for me to remember. 

00:17:17 

Dr. Bluestein 

I have an acronym for the approach that I take to, managing these disorders. It's, MENSPMMS so there's  actually, if you notice there's three M's in there, the first M is for movement. I cannot stress enough how  important it is to move and keep moving. For each person, this is going to look different, but whenever possible,  I think that having somebody like yourself involved in a person's and in a person's, general picture of a wellness  is crucially important, because if I'm working with you, for example, or I have a, a child that's working with you  can look at them and you're going to be able to correct their alignment or give them specific exercises. I love the  creative exercises that you do to help work on. Yeah. I mean, you do such great things. I, and I loved doing,  getting to actually do your workshop.  

00:18:18 

Dr. Bluestein 

That was so much fun at IADMS, because you have such creative things that I think a lot of people get  frustrated because they say, well, but I can't move everything. Every movement that I do makes me hurt more. It  requires a lot of creativity sometimes, and it can be very challenging to find the movements that you can do, but  for most everybody, there are some movements that can be sorted out, but it often requires an expert like  yourself to identify how, where is the starting place, because these, for some of these people, like most of these  people, I should say, just going into the gym and picking up a set of weights is not going to beneficial. You're  not going to be able to see your own form. You may make things worse rather than better. The first M is for  movement, and I would encourage people to, get as much advice and expertise as possible, knowing that, when I  go to look in the mirror, now I've changed my alignment.  

00:19:20 

Dr. Bluestein 

I think that's, the first thing I it's there for a reason it's first in the list that E for education, I believe that having  neuroscience education specifically related to pain can all by itself, help pain processing in the body and reduce  suffering. There's a big difference between pain and suffering. Pain is the sensate is the actual sensation and  suffering is when you have pain plus fear. If we can reduce that fear by having more education and  understanding the role that our mind plays, we're not taking away like the source of the pain, but we're making  the pain a lot less. I've found this to be extremely beneficial and there's lots and lots of studies to back up that  neuroscience education really does work and education for the other aspects of this, not just for the pain. The N  stands for nutrition, and I know that we will be having an expert coming up.  

00:20:26 

Dr. Bluestein 

I won't go into a lot of details, but I do talk with my patients a lot about nutrition. I have my own self  experimented, a lot with different nutritional strategies and have really found that it makes a huge difference in  how I feel in my patient population. I have found that there's so much that can be done with, to, greatly manage,  symptoms. So I think that's super important. So the first S stands for sleep. The relationship between sleep and  pain and sleep, and basically any other function in the body is critically important. If we are not getting good  quality restorative sleep, it affects our immune system. It affects inflammation in the body. It affects pain  processing. So so this is critically important. So the first S stands for sleep. The P stands for psychosocial. It is  really important for everyone to have good social support.  

00:21:27 

Dr. Bluestein 

Sometimes, we don't find that necessarily in our home environment. We may find that in a support group or, by  connecting with other people online. It's important to keep in mind that those kinds of support groups can work  both ways, right. To that. If it's, if it's mostly problem-focused, that can be less beneficial than if it's solution focused. I encourage people to really look for that. And, and to look for people that, understand and can help  you manage, some of the other challenges that come along with those, sometimes it's helpful to have individual,  one-on-one counseling, there are group counseling options that are available for people. Sometimes, it can be  important to have a psychiatrist in your picture because they can manage, they can prescribe medications that  will drastically affect how your brain is processing pain and other signals. S and I don't want people to think  that, excuse me, that's not necessarily like a, a lifetime thing, it could be that you just need that to get over this  hump. 

00:22:39 

Dr. Bluestein 

That, so that could be extremely important. The next M stands for modalities. Whether it's acupuncture or  acupressure, or, I know you mentioned movement before, but I would also, and in that category, I would talk  about things like Pilates, but here, it might be, chiropractic I get really nervous about, but I know some people  do it. I have had patients that have gone and they're doing fairly high velocity things that would have be  extremely cautious with that. I think things like the acupuncture acupressure are beneficial. Things like, the,  soaking in a hot tub or soaking in water can be very beneficial. Doing movement therapy and water can be very  beneficial. There's a lot of different modalities that can be used. Things like a tens unit, for example,  transcutaneous nerve stimulation. Again, I think part of the message that I need to get across here is that I think  a lot of people, they are looking for these single thing that's going to cure them.  

00:23:48 

Dr. Bluestein 

Instead, I would encourage people to think of that. It's you get 2% from this and 5% from that, and 10% from  this other thing. It starts to add up to meaningful improvement. The goal is to have a realistic goal. It's not to  necessarily take away all pain. Although, of course, that would be nice, but if we can get to the point where we  no longer have pain brain, as I like to call it, but we have a quality of life that we're, it's the pain. If if it is still  there is just in the background, so that's the first end modalities. The second M stands for medications. There's  lots of medications that can be used for pain. Some of them need to be compounded because they are, I  prescribed them in a dose that is different than what the pharmaceutical company, uses. For example, something  like naltrexone, which was originally developed for, alcohol and opioid addiction can be used in a tiny dose, a  microscopic dose, like one 10th, the dose of the drug manufacturer can be used as anti-inflammatory anti-pain,  processing drug.  

00:25:04 

Dr. Bluestein 

It can be, very beneficial, but it has to be compounded. There's, there are some medications out there that can be  useful. And then the S stands for supplements. There's lots of different supplements that can be used for both  pain and strengthened and connective tissue. I often will recommend some different supplements as well.  

00:25:25 

Jennifer Milner 

That's excellent. I know that you said just now that those it's, those small changes across a wide spectrum that  will really add up to meaningful improvement. I think that's so important for people to understand when you're  seeking out a doctor or you're seeking out help from anyone, standing on your leg for 10 seconds at a time  balancing, isn't going to fix everything, but standing on your leg for 10 seconds at a time, and getting better  sleep and finding people to talk to, and, overhauling your diet and finding supplements. Those are the small  changes that will add up. It's so dipping into a wide variety of pools is what's going to be the magic bullet, Is  that what you're saying?  

00:26:09 

Dr. Bluestein 

Yes. Yes. You synthesize that perfectly.  

00:26:14 

Jennifer Milner 

So, so what you're saying is that exercise is not dangerous for hypermobile people, is that correct?  

00:26:21 

Dr. Bluestein 

Exactly. Yes definitely. I think, I think that the key thing, when it comes to exercise is finding what works best  for you. It can be challenging to find that sweet spot. A lot of people talk about the boom or bust cycle. What  they'll do is they will just go, they finally have a day where they're feeling better and they overdo it. They will,  Oh, I think I'm going to go for a run or, something that they don't normally do, and that sets them back. So I  think the important thing for people to realize is number one, exercise needs to be highly individualized. It's  what is right for your body at that point in time. How do you feel the next day? How do you feel the day after  that? How do you feel a few hours later? Those are the important cues to look for. 

00:27:11 

Dr. Bluestein 

If you do something and the next day you're absolutely miserable and you can't even get out of bed. That was  too much, but if you're a little sore and you're a little, like your muscles are a little sore that's okay. I think that's  the other thing that I try to get across is that it's a sunburn while you're sitting out at the beach. You can't tell if  you're sunburnt or not. If you're hyper mobile, you can't necessarily tell while you're doing the exercise. That's  for a whole variety of reasons, we can discuss that another time. While you're doing the activity, it can be hard  to figure out. This was something that's was really challenging for me was Zumba, which is one of my absolute  favorite loves. It's just so much fun, but I cannot let myself just freely go into it because I could be setback for  weeks.  

00:28:01 

Dr. Bluestein 

I have had to learn like, what's a safe range of motion for me, what's a safe amount and just learn by trial and  error. It's important for people to pace themselves appropriately. Yeah. 

00:28:15 

Jennifer Milner 

Well, and as Moira said, in one of our first episodes, they injure more hypermobile people injured more easily  and take longer to recover. Right. Knowing that and understanding that and being careful, and it's so hard for a  dancer who wants to keep going and wants to push through whatever, tend to not puffy they're feeling in their  foot or whatever. While everybody else can do it, why can't I, and just to understand that they are different and  

that they're in it for the long haul, they're trying to run a marathon and not a sprint. Yes. Yes. The bottom line is  exercise is very important and also should be highly individualized and judiciously, managed.  

00:29:01 

Dr. Bluestein 

Correct. You said something that also reminded me of another thing that Moira said, which is the dancer in  organizing their week. I think that everyone can think about this in terms of organizing their exercise schedule  that you want that dancer to peak on opening night, not be past their peak. I know that this is a really common  problem now where dancers who were originally cast in these roles because of the fact that, and I know a certain  amount of this is really outside of their own control. I, I hope that there are artistic directors that are going to be  listening to these episodes and understanding it's in everyone's best interest to not overdo it for the dancers body,  for the non-dancers body. Because yes, it's an ounce of prevention really is worth a pound of cure. If we can stay  away from that, as she said, the dancer will do it.  

00:29:59 

Dr. Bluestein 

If the dancers asked to do something, they will do it. We need to make sure that we are being mindful of that.  One of my patients said, it's not the doing, it's the stopping. I thought that was very interesting because it's true  while you're doing it. I mean, you can think about that a whole bunch of ways while you're doing the activity,  you feel fine usually. Afterwards how much you overdid it. It's also, but it's also, yeah, but it's also the  deconditioning that can happen if we have this black and white thinking of all or none. So that's again, where  anyone who possibly can get to Dallas, Texas needs to get in to see you, because if you have ankle injury, that  doesn't mean that you should stop using other parts of your body. You should, you can stay conditioned in other  parts of your body, but if we have an injury and then we decondition everywhere else that has all kinds of  implications and can lead to kind of a dangerous spiral.  

00:31:07 

Jennifer Milner 

Yes, absolutely. I 100% agree. That's so box of mine, that, and I would love to work with anybody, but,  unfortunately most people don't live in Dallas or in, even in an area that has easy access to any hypermobility  specialists because they are still relatively rare. How can these people get up to date information on treatments  and therapies that might benefit them?  

00:31:36 

Dr. Bluestein 

I think that the really important thing is to examine where you're getting your information from and make sure  that you are getting information from credible sources. The really challenging thing in this space right now is that the traditional big healthcare centers, like for example, Mayo clinic, where I trained, Cleveland clinic, Johns  Hopkins, while they have some amazing providers within those facilities, it's not necessarily the best place to  go. The reason why I'm going to say that is because I know I have patients in my practice who contacted Mayo  clinic there, they were willing to travel to Mayo clinic. Mayo clinic said, we have nothing to offer you. I'm  thinking of one patient in particular, but this is true. For many of my patients, Mayo clinic said, we have nothing  to offer you this one patient I'm thinking of that.  

00:32:36 

Dr. Bluestein 

The first time she came to see me, she was such a, she came with her service dog. I ended up actually sending  her directly to the emergency room from my office. She came back the following day to finish the visit. She  came back 30 days later, a completely different person. It just was so upsetting to me that Mayo clinic said, we  have nothing to offer you because a lot of the things that I suggested to her were not, I did not put her on a  bunch of fancy prescriptions. I did take her off of some things. I did a lot of education with her and her mom.  We did make a lot of changes in that month. Don't get me wrong, but she was dramatically improved in that  month time. Even me, I'm in I'm right now in Wisconsin. I only have a licensed to practice medicine in the state  of Wisconsin.  

00:33:27 

Dr. Bluestein 

I can take care of people who can travel elsewhere to Wisconsin or at least I could, although that's changing. I,  I'm not sure where my practice actually is heading in the future. It's a challenging space to be in, and I'm trying  to myself personally, even figure out what methods are there available with modern technology to get  information to the most people in the most cost effective way, because, with Wisconsin integrative pain  specialists, the private practice that I've had, people have often flown with their families. They've stayed in a  hotel several nights. They go back home and now we're talking on the phone and having kind of, limited access.  So, I think that the important thing I want people to know is that there are people that I'm not the only one who  is really trying to get this information into the hands of the people who need it.  

00:34:27 

Dr. Bluestein 

I'm working with a group of an international group of people who are trying to help this population. I will tell  people that there are people who are writing emails at four in the morning and lunch, seven days a week we are  having, our next conference is, in New York. It's not a conference that like other people can attend because it's  really a collaborative thing. It's really, it's more of a meeting than a conference. It's a putting all of our heads  together and trying to come up with, I'm anesthesiologist, there's one other anesthesiologist in the group that I  know of. We have radiologists allergists, all of these different, specialists within this group. I firmly believe that  this information is going to get into the hands of people. It's just a matter of overcoming some of these barriers.  Like how do you deal with working across state lines or even international lines and cost issues that people  have.  

00:35:26 

Dr. Bluestein 

So yeah, there's, are there challenges? Definitely. There are definitely people who are trying to come up with  solutions, so stay tuned.  

00:35:40 

Jennifer Milner 

And, and some of it for those people who feel isolated, it's just reaching out and doing their own research and  then trying to get in touch with those people, and trying to learn more from those people. That's how you and I  met.  

00:35:52 

Dr. Bluestein 

Yes. Yes. I love that story. Oh my gosh. I love, can I tell that story? Yeah. Okay. So, so, I little did I know that  you and I would be doing this, however much later, it's just crazy. I love this story. I wrote an article in 2017 for  a pain management journal. They asked me if I would write an article and at that time to be perfectly honest, I  didn't even know that much about EDS, but they asked if I would write an article, for this pain management  CME journal. I was like, Oh, what should I write about? And all of a sudden, I'm like, Oh, I should write about  EDS, pain management hyper-mobility disorders. I wrote this article, it got published in July of 2017. Jennifer reached out to me, well, I should first mention that normally this would only be available to subscribers, but  being the optimistic person that I am, I contacted the publisher.  

00:36:51 

Dr. Bluestein 

I said, please make this available open access. This is way too important of a topic. Many people downloaded it,  that they made it available, open access for twice the period that they originally promised to me. But anyway,  yeah. So which was fabulous. Jennifer, my email address was in there. Jennifer sent me an email and said, Oh,  I'm so fascinated in this topic. I would love to chat sometime. I was so excited to get your email. I said, and I  wrote back and said, yes, we absolutely should chat. The very first time that we spoke on the phone, I thought,  Oh my gosh, I have to meet this woman sometimes she's so she is so smart. We have such complimentary skill  sets because about so many things that I don't, and I have information to share with you that, can benefit the  people that you're taking care of.  

00:37:48 

Dr. Bluestein 

It was so exciting and little did I know that, I guess it would be about two years later that we co presented at I  Adams. Right. And, and the funny thing about that was in Montreal Canada. The funny thing about that was you  and I were sitting in a lecture hall that very first day, and like trying to find each other and kind of texting, I  think you're in this role, I think you're a belt cause we hadn't even met.  

00:38:15 

Jennifer Milner 

Yet. I'd never met in person. We had.  

00:38:17 

Dr. Bluestein 

Not met in person, but we had been working collaboratively with the amazing and brilliant Dr. Bonnie Robson,  who is a psychiatrist in Canada. The three of us had a presentation and Montreal. Yes, it was, to me, it's just an  amazing story about, you reach out and you just have no idea where that's going to lead and with modern  technology, it's just incredible the things that we can accomplish, because I think that, hopefully we really have  helped move the needle. I hope that there's lots of people that will be listening to this podcast. It's been  absolutely amazing to have you as a guest cohost and your insights into, all these different conversations that  we've had with different people, because your experience and expertise is so valuable. I just think it's so cool  that it all started literally with an email, ,  

00:39:17 

Jennifer Milner 

It really did. The moral of the story is don't be afraid to do your research and then don't be afraid to reach out to  those people. Not everyone can answer right away and you may never hear from some people, but that the  information is out there and all it takes is finding one doctor that will then find another and another, and then  we'll help you pull together that team.  

00:39:40 

Dr. Bluestein 

Correct. The other thing that you did that was amazing when you had emailed me and then this really evolved  over that entire period of time, right. Since you, I think you, I believe that you were the very first person to  email me actually from, based on that article, based on the article. Yeah. It is very funny. There were, there were  other people in there, but you I'm quite sure you were the very first one because I remember thinking, Oh,  somebody read it. You don't know when you write something, if anyone's going to read it or not. Right. So, so I  think that, the other thing that you did that I think is an important lesson, is that you made it easy for me, you  didn't ha again, getting back to the realistic expectations, you didn't say, can you please send me, blah, 20  different things? you're just like, Hey, I would just love to chat sometime.  

00:40:31 

Dr. Bluestein 

It made it feel like something that I really wanted to do in a very easy and natural fit. We realized that we have  so much in common. 

Page 9 of 12 

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Transcript for Bendy Bodies Podcast, Episode 19: Living Fully with a Hypermobility Disorder with Dr. Bluestein 

00:40:42 

Jennifer Milner 

Right. And, and the, one of the things that it has been so valuable for me, in our friendship is the information  that you have is coming from such a great, medical point of view, but not the, well, this is what I learned 20  years ago in medical school. This is what it must be, but the, you are constantly researching and constantly kind  of pushing those boundaries and we've seen research and information about EDS, especially hypermobile EDS  just kind of explode in the past couple of years. Could you talk about where the research is on this right now and  where do you hope it will focus just in the coming years?  

00:41:22 

Dr. Bluestein 

I, I think that the biggest frustration to me is getting the information as quickly as possible from the, of the  researchers into the hands of the clinicians that are caring for patients. I opened my practice, which wasn't long  after I published that article, when I opened my pain practice, I decided from the very beginning that I was only  going to see patients part time. That was so that I could continue to do research. It is a very time-consuming  process to interact with this international group that I'm involved with. These other things that I'm doing, try to  stay up on the literature, et cetera. I think that we need to figure out better ways of getting information from the  people that are caring for patients because that's research too. It's just, it's like an N of one type research. It's  maybe not the same kind of research as randomized, double blind controlled trials, which of course have their  incredible place in the moving things forward.  

00:42:28 

Dr. Bluestein 

At the same time are very challenging to set up. By the time usually that we have the data and publish it's, I  don't want to say it's old, but it's, it takes time. Right. It's important to think about all of the information that  we're gathering and keep it in context. For me, if I've mentioned one person and that worked for that one person,  that's still just one person, ? so I think that just figuring out how to, especially with low risk interventions, really  get that information as quickly as possible into the hands of people that can actually make those interventions.  It's one thing, if we're looking at cancer chemotherapy, now we're talking major expense, major side effects,  major risks, we need a lot more data, but when it comes to things that are super low risk, and it makes sense, like  for example, the dietary changes, I think then we need to realize that the level of evidence should be different, ?  

00:43:27 

Dr. Bluestein 

So, but I'm glad that you mentioned about the research, because I think that we will be getting a lot more  information in the future and that people should stay tuned, understand that if they have a clinician who is  working full time, raising a family, that their amount of time to do research is right, is not that big. I think your  strategy is a great one bringing in that single piece of paper, if you want to bring in an article, that's fine too, but  I would suggest highlighting, like, even highlight a couple of sections. Again, very respectfully with a question  Mark, do you think this could apply not demanding? Like, I want this and this done, but Hey, I saw this and  what do you think it's just going to engage that person. So in a much more effective way.  

00:44:22 

Jennifer Milner 

Yes, you're absolutely right. That's one small thing that everybody can do, right. No matter how big their city or  any of that stuff. Right. Well, I'm speaking of getting information out there into their hands, into people with  these issues hands, do you have any links or sites that you would like to share?  

00:44:40 

Dr. Bluestein 

I am trying to keep everything on the hypermobilitymd.com website. I do have a, I call it a newsletter, but just  so people know, like other than the rare instance, when a couple of things happen relatively close together, you  will not be inundated with emails, but if you sign up for updates on the hyper-mobility md.com website, there  will be, as new articles that, certainly not every article, just certain ones are published or when there's a new  episode of Bendy Bodies that I want people to be aware of. Or other updates to other things of information that I  think are particularly relevant. That's a good place to, if you sign up for those updates, that's a good place to,  make sure that you're amongst the first people to be notified of things. The website is quite new, so we will be  continuing to add more things to it. 

00:45:36 

Dr. Bluestein 

It's also a good place to reach out through like the contact me link and let me know what are some things that  you want to see on, for example, the Bendy Bodies podcast. You can also email  

bendybodiespodcast@gmail.com and let us know what you like, what you don't like, what other guests you want  to see. We're going to be covering a lot of topics, related to dance, some topics that are not related to dance  other, things that are applicable to the general population from geneticists to, rheumatologists and, we have a lot  of other guests lined up. Basically, that's kind of the hub though, if you will, the hypermobility md.com website,  

00:46:27 

Jennifer Milner 

Excellent. That's a great place to start for people looking for information. I know it delivers them to some other  great spots as well. Yes. Well, it's been a treat interviewing you and getting to share all of the wealth of  information you have on, hypermobility spectrum disorders, with our listeners. I'm so grateful that information  is out there now for them to use. You have been listening to Bendy Bodies with the hypermobility MD today.  Our guest has been Dr. Linda Bluestein, host of Bendy Bodies. I'm Jennifer Milner, that's it for today, but we  have lots more great guests coming up. So stay tuned.  

00:47:07 

Jennifer Milner 

Thanks so much. Thank you for joining us for this episode of Bendy Bodies with hypermobility MD, where we  explore the intersection of health and hypermobility for dancers and other artistic athletes. Please leave us a  review on your favorite podcast player remembers to subscribe so you won't miss future episodes. Be sure to  subscribe to Bendy Bodies, YouTube channel as well. Thank you for helping us spread the word about  hypermobility and associated conditions. Visit our website, www.bendybodies.org. For more information, for a  limited time, you could win an autographed copy of the popular textbook disjointed navigating the diagnosis and management of hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders just by sharing  what you love about the Bendy Bodies podcast on Instagram, tag us at bendy underscore bodies and on  Facebook at Bendy Bodies podcast. The thoughts and opinions expressed on this podcast are solely of the co hosts and their guests.  

00:48:12 

Jennifer Milner 

They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not  constitute medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for  general education only, and does not constitute medical advice. Your own individual situation may vary, do not  

make any changes without first seeking your own individual care from your physician. We'll catch you next  time on the Bendy Bodies podcast.