Episode 3- Dr. Linda Bluestein M.D.- Hypermobility, Ehlers Danlos Syndrome, and Why You Are Stronger Than You Believe.

Hypermobility
Written By Andrew Dettelbach

Overview

In this episode, Andrew (The Shirtless Dude) Dettelbach and Katie Goss interview our first guest Dr. Linda Bluestein M.D. on all things related to hypermobility, hEDS, and much more.

Topics Covered

Here are the key topics of the episode in order.

  • Dr. Bluestein’s background and personal history with pain and hypermobility

  • The impact of diagnosis with Ehlers Danlos Syndrome and hEDS

  • Pain is information and what that means for you

  • Disc herniation and the power of labeling and anchoring to what’s “normal”

  • Why you are stronger than you think you are and the impact of mindset

  • The reality of forums and Facebook groups

  • Cognitive Behavioral Therapy and Pain

  • Why functional capacity and quality of life are better measures than an X out of 10 pain scale

  • The meaning of MENS PMMS

  • Why you deserve a therapist

  • What is Evidence-Based Medicine (EBM)?

  • The role of off label prescriptions

  • Should you hyperextend your knees and elbows?

  • The role of mid-range, active-range, and end-range strengthening

  • Party tricks and hypermobility: Should you do them?

  • The role of testosterone and pain

  • Dr. Bluestein’s driving purpose and future ambitions

Show Notes

Episode Transcript

Dr. Linda Bluestein, M.D.

[00:00:00] Dr. Linda Bluestein, M.D.: We need people in healthcare. We need people like the two of you who are coaching people and helping people live their best quality of life. Because we're, we're otherwise kind of headed for, for disaster. I think. I mean I cannot tell you how many young people that I get asked to fill out disability paperwork for.

This is not good. Because it's also we get so much fulfillment from being able to do work. And for me being going from being not able to work, to being able to work and to serve other people and finding my purpose has been it gave me my life back and that's what I want to do for other people.

I want to be able to give them their life back and I'm hoping that I can also do it on a bigger scale. And that's why I do the podcast and other free things, because I know not everybody can afford to come see me. One-on-one so I do offer a lot of free resources and, and the goal is to have more things like classes and giving people the [00:01:00] tools that they need in whatever, whatever the best most efficient model is. 

[00:01:10] Katie: Welcome to the Whealth podcast. I'm Katie Goss and I'm Andrew Dettelbach. On today's episode, we have a very special guest as our first guest on the podcast, Dr. Linda Bluestein, also known on social media as hypermobility M D. Dr. Bluestein is a board certified anesthesiologist, integrative pain medicine, physician, and former ballet dancer.

She specializes in treating dancers and other athletes at increased risk of hyper-mobility disorders. She founded and co-hosts the podcast. Bendy bodies. With the hypermobility M D and as a former co-host of the podcast, hypermobility happy hour, Dr. Bluestein contributed to chapters for the book disjointed, navigating the diagnosis and management of hypermobile, Ehlers Danlos syndrome and hypermobility spectrum disorders [00:02:00] through her private practice.

Hypermobility MD Dr. Bluestein helps countless people improve their functional capacity and quality. Dr. Bluestein completed her anesthesiology residency at the Mayo graduate school of medicine after receiving her medical degree from the university of California, Los Angeles school of medicine, and regularly presents her work at national and international meetings.

Dr. Bluestein serves as the pain management committee chair for the nonprofit EDS research foundation and as a member of the allergy and immunology working group for the international international consortium on EDS and HSE. The board of directors for the bridge dance project, the advisory board for doctors, for dancers and the resources committee for the dance healthy Alliance of Canada.

She is also a founding member of dance Medica, and serves as an expert for pivot dancer. A leading specialist and connective tissue disorders. Dr. Bluestein helped create the first online EDS [00:03:00] CME that's continuing medical education program with a nonprofit organization, chronic pain partners for whom she also serves as a volunteer medical consultant as an assistant professor at the medical college of Wisconsin, central Wisconsin.

Dr Bluestein directs the Rishi healer's art program. More information can be found on her website, hypermobilitymd.Com. 

[00:03:24] Andrew: So she's kind of a big deal. She's done a lot with her life in the aspects of helping people with hypermobility. And I think it was a really profound conversation because a lot of those things we, we often tease and make fun of the medical doctors in the medical community.

And she's the complete opposite of the people that we often make fun of. And it was very enlightening to have a conversation where. We're kind of meeting eye-to-eye as, as kind of trainers. Katie used to be a nurse. I didn't get my physical therapy license and have just been training [00:04:00] people online.

But just to see that we are both aligned in the same mission of helping people in a positive. 

[00:04:06] Katie: And she has Ehlers Danlos syndrome herself as well. So I think the conversation was great going into viewing it, not only from a medical doctor and a medicine point of view, but also as the patient and her even sharing her experiences of gaslighting.

With the roles reversed in her as her in the patient seat. And I think really the big takeaway is that holistic and integrative approach of really addressing all of the controllables controlling the controllables. You can't change your diagnosis, you can't change your genetics, but you can profoundly impact the way that you feel and 

[00:04:45] Andrew: function.

I own it without further ado. Dr. Linda Bluestein. 

[00:04:51] Katie: We have a very special guest here with us today, Dr. Linda or as you might know her on Instagram hypermobility MD, thank you so much for taking the [00:05:00] time to join us on a Sunday. Welcome.

[00:05:03] Dr. Linda Bluestein, M.D.: I am so excited to chat with you 

both.

[00:05:06] Katie: So Dr. Bluestein is has a background in as an anesthesiologist, a former ballet dancer has a certificate in performing arts medicine. She also has EDS herself and sits on a bunch of various boards and committees, and really is. An amazing voice for EDS advocacy. She also has a tremendous amount of free resources that she puts out to really help people learn more about EDS and for anyone who is either a provider or working with dancers or people who are hyper mobile.

So we will link all of that in the show notes so that you can access those as well. I would love to hear about your, your background, just kind of your story. If you want to start at the beginning and just dive in with that, that'd be great.

[00:05:56] Dr. Linda Bluestein, M.D.: Sure I can start at the very beginning. As a [00:06:00] baby, I had terrible asthma and but this was quite a while ago and my parents would take me to the emergency room every so often. And just when I had a severe flare take me in and I'd get up and effort and all of that. But it wasn't until many years later that I started having more allergies, severe, severe allergies, gastrointestinal problems.

Then I started as a later on, teenagers started getting terrible joint pain and issues with my tissues in my joints to the point where I couldn't continue dancing. And I really wanted to become a professional dancer. So this was emotionally really hard on me in my late high school years.

And so I, I kind of had a tough time with, with all of that, but decided I needed a plan B and I had always been interested in science. So I decided why not go to medical [00:07:00] school?

[00:07:03] Katie: So at what point did you start kind of looking into, or finding out about connective tissue disorders where you diagnosed in high school then?

[00:07:13] Dr. Linda Bluestein, M.D.: Oh no, no, no. It was ma many, many years later. So I fast forward, 30 years, something like that. And I was having a lot of PR I had a lot of problems all throughout there migraine headaches joint pain. Neck problems, back problems, sciatica and knee problems, et cetera, all kinds of weird injuries with, with little to no provocation.

And I kept telling my internist, something is wrong with me. I don't know what it is, but something's not right. I get injured way too easily. Terrible migraines, terrible, terrible, continued with the allergies, et cetera. And nobody had an idea what was wrong. And I ended up getting diagnosed with [00:08:00] something called Tarlov cyst, which is where the lining of the of the, the lining of your nerves in the spinal cord that come out of the spinal cord is enlarged.

And then the pressure that happens in that area causes other nerves to be compressed. And so you can develop a whole host of symptoms related to that. And I was reading about this condition that I had that was found on my MRI MRIs, I should say. And. I came across. Sometimes people who have these things have a connective tissue disorder and I went, Hm.

I wonder what connective tissue disorders are. Because as an anesthesiologist, I didn't really know that much about connective tissue disorders. So I started reading and I came across Ehlers-Danlos and I was like reading, going, oh my gosh, that's me like so many patients, right? So many of us, that's how we figure it out.

So I went to see another [00:09:00] rheumatologist. I first saw a rheumatologist when I was a teenager. Now, here I am a 40 mid 40 year old adult. And I went to see a rheumatologist and the first rheumatologist that I said, oh, so I said, oh no, no, there's nothing wrong with you. You just need to exercise in the pool and, and you'll be fine.

And then I saw a different rheumatologist and he did diagnose me with hypermobile EDS. At that time I think it was type three or it was definitely before 2017. Before the new classification, but then he also told me there's nothing that you can do about it. And I literally have spent every single day since then trying to prove him wrong.

[00:09:43] Katie: I understand that it's a, can be a really great catalyst. We were highly motivated by similar sort of 

[00:09:51] Andrew: in fact, your, your story sounds very similar to my experience. I grew up with asthma. I don't, do you still have asthma or did it of go away?

[00:09:59] Dr. Linda Bluestein, M.D.: [00:10:00] I don't, I don't take medication for it, but I do certain times of the year and things like that are more, a little bit more challenging.

[00:10:06] Andrew: Yeah, I'll experience it more with a chest cold. But for the most part, it stopped after I left a very poor air quality place in Los Angeles. And that just definitely improved from that situation on, but the pain from seemingly doing absolutely nothing since I was a very, very young kid all the way up until now.

And yeah, obviously being diagnosed much later, Katie is the one that brought it to my attention. I had never really considered looking that in depth to it. Cause I just considered it to be normal, that people experience pain quite often. And she's well, you're very lanky and very long she wanted me to check from our fans.

I 

[00:10:48] Katie: just thought I hadn't met him in person only virtually. And I'm like, you're so long. And your arms are so wide and you're S you're so bendy and it was not that long after I was diagnosed. And I just thought [00:11:00] if I have this thing. You definitely had them do some of the Beighton stuff. And I was like, you, you should at least bring it up with your physician.

And he did 

[00:11:09] Andrew: geneticist diagnose me. 

[00:11:11] Katie: And my situation was similar to yours. In that I just, a lot of the pain, the injuries with it just seemed like anything I did. I ended up getting injured. And then working as a nurse those long shifts, it's just I always had back pain. I always had hip pain.

My neck is hurt. It just seemed I felt like I couldn't keep up with everyone around me. I'm like, how are you fine. It just doesn't bother you like that. And then after my kids, I had a very significant pelvic organ prolapse and hernias and had that repaired and the stitches didn't hold and.

I was feeling just different things coming together. And it was the same thing. I started looking something up and I was reading about the prolapse and I saw something about connective tissue disorders and I'm like, I don't know what that really means and started reading about EDS. And it was the same thing.

I was like, wow, I have that. I [00:12:00] have that to have that too. Wow. Yeah. So similar situation with diagnosis. I I'd like to go back just a little bit. I'm curious, you said that you didn't learn a lot about it as an anesthesiologist or in medical school. Can you maybe touch on that a little bit? And I guess I'm also curious if, if they didn't really cover connective tissue disorders, did you learn about some of the comorbid conditions that can kind of go along with that?

Like the pots and the mast cell and dysautonomia

[00:12:30] Dr. Linda Bluestein, M.D.: Sure. So, so I graduated from medical school in 1990. So excuse me. 

I was just gonna say were either of you alive yet?

[00:12:43] Katie: Yeah.

[00:12:45] Dr. Linda Bluestein, M.D.: So, so we didn't, there was no, at least not readily available, no internet we, I didn't own a computer. Everything was in books and I did learn about connective tissues. Of course, I [00:13:00] learned about connective tissue disorders to a certain extent. But the amount of information that was available was so much less.

And I think a common misconception is kind of what the goal of medical school is. So the first couple of years are all basic science. So you do it's learning about the different types of cells and how they work in the body and histology and some neurology and pathophysiology and it's, it's all like basic science type stuff.

The first couple of years, at least it was back in my training. Now I teach at a medical school that has a compacted curriculum in three years. And those students do start in clinic literally in their first year. But when I went through, we didn't go do start to do rotations in clinics until the third year. And we learned about things like connected tissue disorders. We definitely [00:14:00] did cover things like Mar fans, but if you think about it, what information was actually available when I graduated in 1990 and it's important to keep these things in mind because while I totally understand the frustration and, and Rodney Graham's line about EDS is the most neglected disorder of all of mankind.

That is completely true. I completely agree with that. We also have to recognize though, that physicians need to know about a lot of things and nowadays there's information available so readily available. And a lot of patients they do have the ability to do a lot, a lot of reading, they're communicating on Facebook groups, which can be really helpful.

But so they can get tons of information and their doctor that they're seeing. So let's say they're seeing their PCP. Their PCP needs to know how to treat infection and injuries and [00:15:00] looking at skin cancers and if their PCP is a family doc, then maybe they're even delivering babies and maybe they're taking care of kids and adults.

And so I think because I get so frustrated when I see people say, why did my doctor say, I don't know, but I literally will read in the next thing on social media. Oh my God, my doctor Googled Ehlers Danlos right in front of me. And I'm like, but you say that you want them to say, I don't know.

So you should be commending them for looking it up. And not just assuming that what they know is is correct, and so that's where I get kind of frustrated. I feel like there's some double standards there because it's, it is really hard to take care of people with chronic complex conditions in our current healthcare. 

[00:15:49] Katie: Yeah. 

[00:15:50] Dr. Linda Bluestein, M.D.: need us people, we all need better care and we desperately need that. And it's not just us it's anyone with [00:16:00] any chronic condition complex condition multi-systemic condition. Because these are not, they're not a good fit for a current siloed healthcare. We have rheumatology separate from immunology, separate from gastroenterology, separate from cardiology, et cetera.

And some of these conditions like connective tissue disorders impact multiple different systems. So it can be, it can be challenging, but, well, what I learned about Marfan, et cetera, was it was pretty limited, but it was also based on what people knew at that time. Then I went into my anesthesia residency, which is. So you go to college, then you go to medical school for four years, then you do residency for four years. And during that time, you need to learn how to manage an airway and do all different types of anesthetics. And you need to learn about all the drugs. So, and you need to learn about the conditions, medical conditions that most are more, are most likely to impact your care for that patient.[00:17:00] 

And you learn about positioning for all the different types of procedures, but in hindsight, yes, it would have been very important to learn. Some people are prone to dislocate their joints and those people need to be positioned more carefully than those who don't have that problem.

Not even necessarily putting like a label on it, but just as you're assessing the patient kind of see, do they have this kind of a history? So I think there's a lot that could be improved, but I think it's also important to keep in mind, like 

what's 

what are some realistic goals and objectives?

[00:17:37] Katie: Yeah, I think that the card that you made for, I 

[00:17:40] Dr. Linda Bluestein, M.D.: Well, 

[00:17:40] Katie: like a wallet card for anesthesia. I think it's so great because it's just super abbreviated and like really just the bullet point things. I'm curious when you were working as an anesthesiologist, did patients ever bring anything like that to you?

And how, did you respond in those situations? Or have you heard from people who have [00:18:00] used that card and do they typically get a positive response or do they kind of get almost like an eye roll, like exasperated kind of, I know how to do my job.

[00:18:08] Dr. Linda Bluestein, M.D.: sure. So, so I created those cards. I'm trying to remember when that was exactly. It doesn't, it doesn't really matter. But when I Ronica, I created those cards and I was one of the first people to get to use the card. I had surgery and I took the card with me to the hospital and I was no longer working at that hospital, but I was still working as an anesthesiologist.

No, actually, I wasn't, I was, I was, I was not working anymore as an anesthesiologist. I had already opened my practice. That's when I created the cards. So, but, but these were my colleagues that I had worked with previously. So I gave them the card and I kind of explained, and, and it was well received I mean, I think again, it's, I tried to make it super, super succinct and in their own verbiage our shared acronyms and our [00:19:00] shared understanding of priorities, part of the challenge now is healthcare systems.

They want things efficient. It's all about throughput and in the operating room and every single minute is, is crucial. So between cases between surgeries you, you have to, they have to clean the room and you have to see the new next patient and It's a pretty fast paced process. So I tried to make that as efficient as possible so that they could understand these are the things you need to be thinking about.

And this is why this is important. So I have given those cards out to a lot of my patients, I did eventually decide to put them available online, just so that other people could access the information as well. I do need to update that card. Cause that was quite a few years ago that I, so I've changed the name of my practice since then.

So it's a little bit out of date, but at least the information most of the information is still relevant [00:20:00] and 

is still there. There's a few things that I want to add to the, to the card. And that is on my to-do my very long to-do list.

[00:20:07] Katie: can relate to that for sure. Yeah. We'd love to link that in the show notes too, if that's all right with you. 

[00:20:13] Dr. Linda Bluestein, M.D.: course. 

[00:20:13] Katie: such a great resource. The specialist, who I had seen had typed up something similar, but you 

[00:20:20] Dr. Linda Bluestein, M.D.: Yeah. 

[00:20:20] Katie: smaller and not, not the acronyms or, or abbreviations or anything like that.

For me when I was going in for surgery and I just think it's helpful to have something very concise like that, that, that patients can provide. 

[00:20:34] Andrew: So I have a question how many, or how what's the percentage of people that might actually experience dislocations when they're under anesthesia or when they're being set up for those positions?

I hear that and I'm like how much of the hypermobile population experience that severe.

[00:20:53] Dr. Linda Bluestein, M.D.: Right. So I would say dislocations are probably extremely rare. The challenge is so let's say [00:21:00] you're having a prone procedure, meaning that you're on your belly. So we put you to sleep and put in a breathing tube when you're most of the time you'll have a general anesthetic, if you're on your belly.

So let's say you're having back surgery on your belly. So we put you to sleep. We put in the breathing tube and then we roll you onto your stomach. So after, and the process of putting you to sleep, one of the drugs that we give you paralyzes your mind. So now your muscles have even less ability to help support your joints.

And this is always a multi person process. It may not seem like a big deal, but taking a limp asleep body with, excuse me, with lines you've got different things core. You've got the ID, you've got the breathing tube. If nothing else, you have those two things. Usually you just connect just about everything else.

And then you roll them onto their belly. This is not a two people thing. This is like a, at least for P I'm trying to think how many people depends on the size of the person, but [00:22:00] you may have 1, 2, 3, 4. You probably have like maybe five people. Doing this. So if, if one person pulls something one way, when a person pull something, the other way to me, that, to me, the bigger thing is like the shoulders, right?

The shoulders, or the elbows are kind of at higher risk in that case. Or like maybe a wrist and then, and then we position the arms either like up like this or down by the sides, depending on what type of bed, et cetera, Frank dislocations, I believe would be usually recognized at the time, unless somebody has something that slides in and out so easily that it, that it goes back into place.

And nobody even realizes that. But a subluxation I bet happens a lot more frequently. And I also believe that people who have EDA. Marfan's you know, other connective tissue disorders and even those that have HSD or hyper-mobility disorders are also possibly at increased risk of neuropathy or [00:23:00] a nerve problem following surgery, like a compression type injury.

[00:23:05] Andrew: and for the listeners, what's the difference between a subluxation and a dislocation?

[00:23:10] Dr. Linda Bluestein, M.D.: Sure. So a dislocation is when a joint completely comes out of proper alignment. So like a good example with the shoulder. Normally I'm the head of the humerus comes out in, in front. And if it's, if it dislocates. So if 

[00:23:25] Detached audio: it 

[00:23:25] Dr. Linda Bluestein, M.D.: joint dislocates the bones that normally are lined up a certain way, they have completely come out of contact with each other, with a subluxation.

The bones are not in proper alignment, but they're also not completely out of contact with each other. So it's kind of like a partial dislocation, if you will. And it's important also to make a distinction between. Hearing cracks and crackles and noises, right. That can come from our joints and our bodies.

That doesn't mean that there's a subluxation that happens all the [00:24:00] time. And most of those, even in a body with a connective tissue disorder or a hyper-mobility disorder, most of the time, those noises that come from the body, they are not a dislocation or a subluxation.

[00:24:13] Andrew: cavitations a lot of 

[00:24:14] Dr. Linda Bluestein, M.D.: Yes. Yep, exactly. 

[00:24:16] Andrew: gas in the joint, I believe.

[00:24:18] Dr. Linda Bluestein, M.D.: Yup.

[00:24:20] Katie: All right. You brought up so many good things that I want to get into, but I'd love to hear the rest of your, your diagnostic of journey.

[00:24:30] Dr. Linda Bluestein, M.D.: Sure. So, so when I had my Tarlov cyst surgery, which involves a sacral laminotomy so. Prone for that surgery. And they, they actually cut open my sacrum. They actually take a it's a cell, the sacrum is a solid bone, right. Or it's supposed to be, so they take, they make a little porthole, they take a piece of your sacrum out, which at that point was very thin because of this cyst.

So they, they did that. They they treat the cyst, the drain it, and then they [00:25:00] wrap it with what's called bovine pericardium. So that's from the lining of the heart, they wrap that. So it doesn't re-expand, but, but the porthole back on and then so everything shut. And so I didn't know at the time that I had the surgery that I had this, it was only afterwards and I was doing the reading and stuff like that, that I, that I started thinking.

Hmm. I wonder if that could be the case. And so it was, I really started to put all of that together. As I was reading, I was like, oh my gosh, I, throughout my life, I had so many gastrointestinal issues when I was at the Mayo. Multiple times I was tested for porphyria and I was scoped a number of times and I had a lot of different GI things going on, nobody ever put that together with my eczema and my allergies and my flushing and hives and waking up with urticaria or just like all night long.

You're just like going crazy [00:26:00] with, I mean, my allergies were so bad and I did go through the whole like desensitization shots. They could not get me up. I could not, I could not complete the series because I was having so many reactions to the shots, but they did help a lot. I believe that they helped with my asthma and with my allergic rhinitis and with my eczema and all of that stuff.

So, so that part was good. Yeah, I've definitely had tons of orthopedic things. I've had tons of surgeries. One thing that I, that I'm very fortunate to really have. This perspective, because not only have I worked as an anesthesiologist and I've been a patient, obviously I also, for a period of a number of years, I did something called locum tenens, which means that you go around to different hospitals working as like a substitute teacher, if you will, like a substitute anesthesiologist.

So especially in small groups, if they have somebody out on a medical leave, then they need to bring someone [00:27:00] into, to, to cover. So I've worked in tons of different hospitals. And so it's not just a narrow perspective. I feel like, I feel like it's a pretty broad perspective. And I started realizing and thinking to myself, there's a lot of people having a lot of surgeries, and I'm really wondering how many of these surgeries are really that effective.

So if we took a scale and we said, cataract surgery, almost always successful, rarely complications. Huge improvement in quality of life. So you could have somebody who's 98 years old, all kinds of medical problems. It's a low risk surgery. If they can now see the TV, like that's a huge success. And then you have back surgery for back pain.

No, that's a really bad idea. So, and then all the other surgeries kind of in between so I think I also really started to realize that a lot of people with. Connective tissue disorders and hyper-mobility [00:28:00] disorders may be undergoing procedures and surgeries that may or may not really address the root cause of their problem.

And so they may or may not get the outcome that they're looking for, like what you said about the wounds. And that doesn't mean it was the wrong surgery, but it does mean that you are maybe at higher risk of a complication and most surgeons are not aware of that. So they can't advise the person, they can't advise their patient on something that they don't even know about.

So I think it's very important for people with connective tissue disorders or hyper-mobility disorders to really understand as much as they can about surgery, about anesthesia so that they can make, so at least they can ask more of the right questions. So that's also why I wrote I wrote an article with Dr.

Perdeep Chopra on that topic. And then I also wrote a chapter in the book called this jointed. I wrote a chapter on surgery and in.

[00:28:57] Katie: Yeah, that I've read both the article and the [00:29:00] book. That book is, I have like almost every page earmarked, I feel like in tabs and just highlight and notes. And was just such an incredible book. Really great resource that we can also put in the show notes for folks. So in your opinion, do you feel like a diagnosis is helpful overall for people.

[00:29:22] Dr. Linda Bluestein, M.D.: It helped me tremendously. I, I, I had no idea what the term gaslighting meant until actually fairly recently. I have to admit. I was definitely gas lit and I guess lighted myself now that I know what that means. I definitely was doubting myself because I had so many people around me that were doubting me.

I had my my doctors who wouldn't listen or believe me, I had my my colleagues in the operating room that I was working with. Most of whom did not believe me. I had a few that were [00:30:00] wonderful human beings who were compassionate and understanding. But most of my partners at that time did not really understand what I was going through.

And didn't really empathize. And it's hard on family and friends and I did not realize. How somebody living with somebody with chronic pain, especially back in I'm trying to think if I get the years, right. Let's see. Back in 2000, let's say 10 ish, 2009 is when everything really fell apart.

[00:30:32] Detached audio: Like 

[00:30:33] Dr. Linda Bluestein, M.D.: this last spiel. I fell off a mountain bike and I tore a bunch of stuff in my knee and kind of one thing led to another. And that's how the Tarlov cyst like run into problems with that. And so it was in 2009, 2010 that I w that I had major, major pain brain. I mean, it was all I could think about.

It was all I talked about. It was an, I did not recognize how impactful that was on [00:31:00] my family and on my friends. And now I have a different perspective of course, and that's part of what I try to help people with is. Settling down that pain brain pain is designed to get our attention. Right. But when it's there day in and day out, and if you're somebody like me who has a pretty active limbic system to start with as a lot of us do, then, then those signals can be interpreted in a way that danger, danger, danger 24 7.

So when I first learned about central sensitization and pain catastrophizing, I was like, oh, okay. I can change how I feel by changing what I think that's pretty cool. I'm going to try that. And it really it kind of like over a pretty significant period of time, but then I was able to really get myself to feel a lot better.

In combination with doing a bunch of other things, working on my diet and [00:32:00] changing some medications and supplements.

[00:32:05] Katie: Yeah, I think that is probably one of the most impactful things that we found in our communities. We've been making programs to help people with chronic pain. Since 2016 was Andrew's first one. Not specifically for people who are ever mobile, but just people with pain. He had a 

[00:32:22] Andrew: big, which I wouldn't be surprised if most of the people, 

[00:32:25] Katie: we did start to notice some things, but but yet people I was actually a member of his first program, which is how we met.

And I remember him saying Talking a little bit about that and saying that there's a difference between feeling pain and having damage occurring to your tissues and what are you visualizing when you're feeling a sharp, stabbing pain? Are you visualizing if it's in your back, like your disk exploding and or what is, are you picturing that?

And can you differentiate between, is there actually tissue damage or are you just [00:33:00] feeling the sensation that there's no real harm? There's no, like you can kind of just dismiss it. And how does that impact the way that you experience that pain? And that was pretty 

[00:33:10] Andrew: good. Your, your mountain biking accidents.

Perfect. Example of this is traumatic injury. Like you, you caused damage to the tissue. Whereas a lot of people will wake up and they're like, I took a step out of my bed and my back just went out and I I know that I tore my disc again. And I'm like, you took a step 

[00:33:28] Katie: and they tend to do the catastrophizing.

Yeah. I'm going to be out of work and I'm going to and so just a lot of times getting people to realize that most often in a couple of days, you're going to be feeling way better. So not get ahead of ourselves and start planning how bad this is going to be. Let's just focus on the things we know that help and breathing.

And let's go back to looking for those little 1% improvements and focusing on the silver linings. And so 

[00:33:54] Andrew: we're on the same page there. 

[00:33:56] Katie: Yeah.

Sorry, go ahead. 

[00:33:58] Dr. Linda Bluestein, M.D.: Andrew, I'm so glad that you [00:34:00] also have programs for people with chronic pain, whether or not they have hypermobility, because I do really believe that anyone with a chronically painful condition, if they can understand that if you feel, if you feel discomfort, if you can try to perceive that as information coming from your body and what might that information mean?

Because sometimes it means you should make a change. Okay. I've had kind of an issue lately with my neck and if I try to do certain like soft tissue stuff, it flares up my medial epicondylitis. But if I just go calmly, okay, there's no damage there, but that's just telling me that I should not continue doing that in that way.

Because if I continued to do that, then maybe I'm going to run into a problem. But I'm so glad you brought up specifically about discs. I cannot tell you how many times people tell me about all their herniated discs and it's like spines. That's what they do over time. [00:35:00] there's a fascinating study where they looked at.

So they, they took two groups of people and in one group they read the radiology report exactly as they normally would. And in the other group, they read the radiology report as they would. And then they added a sentence that said, these findings are typical for a person of this age. Okay. And these were like matched groups.

Well what's coming next, people who, who, where they added that sentence, they did better than the people who didn't. So I think so often we, we now, especially nowadays we can read our own medical records in a lot of instances. And so we, and then we Google stuff, right. 

[00:35:44] Andrew: oh 

[00:35:44] Dr. Linda Bluestein, M.D.: And then we go, oh my God.

Oh my God. And it's normal. I mean, that's a normal thing. And especially because we have so much difficulty getting time in front of our doctor, so we feel like we need to kind of do some of these things sometimes, but we can end up kind of [00:36:00] misinterpreting we read and thinking that this is something that's abnormal, we all age every, everybody is going to go through the aging process.

I mean, what's the alternate. Right. We either age or we're not here. And of course there's things that we can do to help improve that. But, I think that, that your disc example of such a perfect one, because of the fact that just because somebody has some, it, there's a lot of fine details in there that are so important, 

[00:36:30] Andrew: yeah. And I, to go along with that, I believe, I don't remember the study that was done a while ago, but they took like a hundred people and they just MRI. None of them have pain. And a majority of them had tears of various kinds all over the knee and they didn't experience pain. So I mean, people send us MRIs and x-rays 

[00:36:50] Katie: every week and 

[00:36:53] Andrew: we don't give them advice, but you know, what I often tell them is just because it shows up on the MRI MRI, or [00:37:00] x-ray, doesn't even mean that that's why you were experiencing pain in the first place.

[00:37:04] Dr. Linda Bluestein, M.D.: Exactly.

[00:37:04] Andrew: So they found something like, aha I'm gonna put This is the reason when it may not be at all.

[00:37:12] Dr. Linda Bluestein, M.D.: Yeah.

[00:37:14] Katie: Yeah. I think I, my opinion with diagnosis, I think in my experience, it was helpful for some of the similar things that you said. I think even when it came to family, I grew up in a family.

Doctors and nurses. And I like my family always kind of treated me. Like I was a little bit of a hypochondriac oh, Katie's got something wrong with her again and there's pictures of me as a toddler with my arm in a sling because I couldn't use it. And I had a bunch of issues with my neck as a baby, not holding it up.

And I just felt like I kind of had that. I don't know, kind of just dismissed even by family. And then when I was diagnosed, my, my family was starting to look into it and read about it. And they were like, well, wouldn't that explains this in this wow, you really there really was something going [00:38:00] on.

And I think that that was very validating for me. And I also have a personality where I tend to dive deep into reading and learning everything that I possibly can about a topic when you know, something comes up. And I did that with EDS and I joined a bunch of support groups and. I kind of had to take a step back because I found a lot of, I know you've talked about this too.

There are groups that are focused on making improvements and then there's groups that are just focused on the negative aspects, or it almost becomes a competition of who has it worse or who it just put me in a very negative mentally. And I think I began reading so many papers and medical literature too, that I started to think about my neck and go just immediately went to worst case scenario.

Oh my gosh, I'm going to need this fusion and I'm going to, and it just wasn't helpful. It gave me a lot of anxiety. I got very [00:39:00] depressed and that was about the time that I met Andrew and started doing his program. And then when I saw how bendy he was, and then when he got diagnosed and I saw the way he was living his life, it, I guess it allowed me to just kind of go, okay, My whole life up to this point without being diagnosed, not knowing that I had this thing and I was active.

And I know that when I exercise and I I have less pain in all of my joints. I know that when I sleep better, I have less pain. I know. So to kind of take a step back and focus on the things that I knew made improvements and kind of go a little bit reverse on the kind of fragile mindset.

Like I sort of got into the space of I'm fragile. I can't do that. I don't know if I should do that with my EDS, and he challenged me a lot on that. Like your people without EVs get her all the time too. What's better lift weights and be strong and maybe get hurt or not, and then you're weaker and then you would just have worse pain all the time.[00:40:00] 

And other issues like so, um, I guess I'm curious, like what your thoughts are with pros and cons to diagnosis and what happens after. 

[00:40:12] Dr. Linda Bluestein, M.D.: Sure. And, and what you were saying made immediately brought to mind a patient of mine who says one of the most valuable things that I ever did for her was to tell her during her first visit, I told her that you are stronger than you think you are. And she said that was a really valuable thing for her.

And. I totally agree with you about the I'll get into the diagnosis in one one other second, but I totally agree with you about the Facebook groups. When I was a, a patient and I, I was not, I was between, I was like on a medical leave. And so I was in some of these Facebook groups. I am very suggestible and next thing I know, I'm like, oh my God, I have CCI have Chiari.

And then I was like, I have to just not read this stuff. And then [00:41:00] I felt better. I mean, and I know that like for a lot of people, obviously that's not how it works. And and I, and obviously there are people who truly have those conditions and they, and, and they're really difficult to get diagnosed and get proper care and all of that.

But it's important to remember for the Facebook groups. And I'm just using that as an example, but for a lot of the support groups, the people that are writing on there are the ones that are doing the least well, because they're really struggling and suffering and you don't the people who are outliving their life.

They're, not taking the time to be on. And they're not necessarily coming back on and saying, Hey, I'm doing great. And this is how I got there. A lot of times they either can't, can't bring themselves to go back to that terrible place that they were at. I have patients like that say. I want to share my story, but I can't, because I can't even bring myself to think about how incredibly sick I was.

So, so yeah, I think those, I think that that can be one of the challenges of our, our online [00:42:00] when it comes to the pros and cons of diagnosis, though, I think that you're right. It can be incredibly validating. And for me it certainly was, it was very, very validating to know that there was a name to put a name to what it was that I, that I had really did make me feel a lot better because I was starting to think maybe I am lazy or crazy or all the, yeah.

So I think in a lot of regards it can be very, very beneficial. One of the downs potential downsides is health insurance. I mean, it will help insurance. If I know, like now I'm not, I'm not a health insurance law expert, but I believe that pre pre-existing conditions are Not as much of a concern as it was at one point in time.

But when it comes to life insurance, that is definitely something that people can have difficulty with when my husband and I went to buy life insurance and they would not insure me, they were happy to insure him, but they would not insure me. [00:43:00] So even though I have hypermobile EDS, I have no I have no sign of avascular fragility problem, but a lot of the insurance companies don't understand that difference.

And I also am an advocate of assessing, I think, I think pediatricians should be really knowledgeable about hypermobility. They should be assessing for joint mobility and helping maybe have programs to send kids to work on proprioception and strengthening and, and muscle tone and things like that.

But I don't think we need to start going and labeling kids at a young age. Kids are so flexible. Anyway, we don't necessarily know like what, what are the norms and kids? So I think we want to make sure that we keep a proper balance of getting the person diagnosed with the proper things so that they have the access to the resources that they need.

And also keeping in mind that these things are going to change over time. The 2017 criteria is already being [00:44:00] revisited and that wasn't that long ago. So it's, these things are medicine is such a rapidly evolving field. And so I think it also is important for, for all of us not to get too overly attached to one label.

Cause what if that label changes? And if you really attached a lot of your self-esteem, self-worth validation to that one label. And now I have one particular patient who was pretty heavily in the EDS world and it was like, oh my gosh, you might have something actually very different as we were going through the workup.

Well, now what's going to happen.

[00:44:38] Katie: Yeah. Yeah, 

[00:44:40] Dr. Linda Bluestein, M.D.: Look 

[00:44:42] Katie: that brings up a good point. I guess people, sometimes what I saw in some of those 

[00:44:49] Dr. Linda Bluestein, M.D.: yeah. 

[00:44:50] Katie: where people who became very identified by their diagnosis kind of like, I felt like an unhealthy [00:45:00] attachment to that diagnosis. Like it defined them and really just was such a huge part of who they were.

And. That was something that was interesting to me and then also wanting to touch on language. And that was something that I also saw in those groups. And even sometimes the way that people EDS will refer to themselves. And I think there's so much power in language and that's something that we go through with our communities.

A lot of the way we talk about ourselves about our bodies is really powerful and people don't realize that. And I sometimes see shirts for EDS and stuff that say like fragile body and I, I get it. And I know yes, we are more prone to being injured and I understand the reasoning behind it, but I'm also like, how can we put a positive spin on that?

Resilient or something like we're super resilient. That's a positive thing versus these just words that I see attached that, I mean, I personally, chronic pain is not. [00:46:00] A phrase. I like it to me, it just gives a negative, having worked in healthcare and stuff. I just, I don't know, to me, it just has a stigma with it.

And I feel that way a little bit about chronic illness too. And just curious what your experience has been. And I know you've, you've a huge driving force in that really looking at language and, and the impact that it has for people.

[00:46:23] Dr. Linda Bluestein, M.D.: I think words are so powerful. I think that the, I can't remember how old I was, but I was pretty old when I realized how powerful self-talk is. And I don't think we really think about self-talk, but we do. We talk to ourselves right. All the time and we can have negative self-talk, which I was going through a lot of negative self-talk when I was kind of not doing well in 2009, 2010.

It was kind of what, again, probably the lowest point in my life and. That's [00:47:00] where CBT cognitive behavioral therapy, something like that can be hugely beneficial because if you learn about the dangers of black and white thinking and labeling and the dangers of the negative self-talk and how to reframe things.

So I remember going to my physical therapist once and kind of, I was beating myself up because I hadn't done my my nerve flossing that week because my schedule was busy or whatever, whatever lame or not lame excuse, I made whatever, but I was going through and telling him that. And he was like, well, let's reframe that instead of beating yourself up over the fact that you didn't do this thing, and you just said, you're doing pretty well.

Let's reframe that to, Hey, I'm doing really well. Even though I didn't do blah, blah, blah, which I want you to keep doing it. That's not the point I want. I do want you to do those nerve glides, but we really can make a choice. Of how we talk to ourselves. And I [00:48:00] think that's super important, especially because so many of the patients that I see.

So, so many, I had no idea before I opened my practice. So many people who are really struggling with chronic pain and are having difficulty. And I, and I also, Katie, I also hate that combination of two words because it does sound like it's never going to go away. And I don't believe that that's true. I believe that in many cases, not always, but in many cases people can vastly improve their quality of life and they can vastly improve their functional capacity.

Which to me, it's all about those two things. It's about your functional capacity and quality of life. I do not ask people for the most part, what number on the pain scale, because to me that's meaningless, could have zero pain, but you can't open doors because you have so many problems with subluxations in your upper extremities or something.

But to me, it comes back to are you able to do what you want to do? Are you able to, to talk to yourself in a way that is [00:49:00] helpful? Because a lot of people have trauma in their history, and this is an extremely common thing that I find and they have not processed the trauma. And the trauma is really, has laid an imprint in the brain that is primed the brain for chronic pain.

if we don't address the trauma, the chronic pain is not going to get better. So if those two are coexisting, then we need to address both just like if anxiety or depression is coexisting with chronic pain, we need to address both. We need to address all of those 

[00:49:34] Detached audio: things 

[00:49:34] Dr. Linda Bluestein, M.D.: that are going on.

[00:49:36] Andrew: So I see this a lot with people in our community is they will have a sudden flare up and they'll they call it setbacks. We call it a learning experience.

[00:49:46] Dr. Linda Bluestein, M.D.: Love that.

[00:49:47] Andrew: Because I actually got that from a member named Kavita she changed it for us many years ago. And people will say, I've had this flare up and they, they focus so much on the movement [00:50:00] and the massaging and heating the area and all this stuff.

I'm like, well, what, what else is going on with your life? Well, I just lost my job. Someone died, I had to move there was a huge life change and suddenly this, this thing pop almost every single time. I see that in our community that there is an emotional component or a stressor or anxiety that is coupled with that injury on top of also shifting the words.

And one of my favorite things to have people do is change the word, but to the word. And when you write out a sentence and you say, I want to walk to the mailbox, my knee hurts. You're now combining those two things together in your mind. even, even just the structure of language, you're combining those two things.

you say, I want to walk to the mailbox and my knee hurts, those are now two separate subjects that are not actually literally linked together. So those are some examples of things that we change how people are communicating [00:51:00] with themselves quietly in their head, as well as speaking aloud. 

So.

[00:51:06] Dr. Linda Bluestein, M.D.: that's brilliant. I love that. And I can't tell you how often people tell me that they had a flare and we'll go through and talk about what potentially could have caused that, because I think that is one thing that they want to know why. Right. And I think you're absolutely right. We tend to not think about those other aspects that, that are so important and it's.

I think one of the common misconceptions in medicine is that if pain gets worse with stress, that it means that the pain is in the person's head. Well, pain is always perceived up here, right? I mean, that is where we perceive pain. Yes, pain con pain comes from the tissues and back up to the brain, but it actually signals go from the brain back to the body also and help to modulate those pain signals.

But really at the end of the day, all pain is felt up here. So things that happen [00:52:00] up here and, and are processed in the body, the mind and the body are not separate. Absolutely not. They are not separate. And anyone who thinks that they are if you, if you read and understand about that, to me, it's empowering.

And I love that you're talking about language because. Rather than there there's a group at Stanford, that's doing amazing work in pain, pain, neuroscience, and Dr. Beth Darnell, who I interviewed on my podcast, bendy bodies, and she's a brilliant pain psychologist. And, they talk about the power of, of using psychologic approaches and things like that.

And I like what they're doing, because they're combining the bio-psycho-social model of pain. I feel like some people do too much of the biologic part or too much of the psychologic part. And it's both, especially in people that have hyper-mobility disorders, we cannot forget what's happening in the tissues, but we also equally can not forget what's happening up here.

[00:52:55] Katie: Yeah, I think the bio-psycho-social model has been. [00:53:00] Something that we rely heavily on, even before we knew what it was. We didn't really, hadn't reached a point where we really learned about it, but we were already focusing on really optimizing all of the factors that we can, like, how has your sleep, how can we improve your sleep?

How has your nutrition, let's talk about that. How's your stress? What is, what reduces stress for you and how can we encourage more of that? And then learning about that model of pain and suddenly we're like, well, that makes sense. Why people respond so well to it. And I think it's empowering for people to realize that there's not, they come in wanting, like what's the best stretch for my herniated disc or what's the best exercise for my knee or whatever.

And sometimes we'll give them like, here's a massage, you can do yourself. And it's going to probably give you some quick relief. But a lot more to it than that. But you know, when people realize that they have a lot more power and control than they think they do in how they feel and how they can function.

For some people that's very empowering for some [00:54:00] people it's daunting. It's like you kind of have to give people as much as they're ready for. And I think that with some people taking responsibility and ownership can be challenging. Cause when you go to someone else looking for them to fix you or make you better, you go to the chiropractor or the physical therapist or the massage therapist that relieves some of the work that you have to put in yourself.

But when you get people to get excited about how much room for improvement there is when they're willing to take some ownership and look at while your pain is always worse after the weekend, what are you doing on the weekend? Or you're going out to the brewery and drinking a bunch of beer and eating a bunch of food that isn't, isn't great.

You're not sleeping well when you do that it's challenging people sometimes I think is some people are more open to being challenged than others, but. 

[00:54:54] Andrew: I think a lot of people come around though. Even I often challenge people sometimes a bit more [00:55:00] intensely and they may shut out. They Mo they won't respond, but I'm they often come back around and they're like, yes, that was 100% correct.

I started implementing that and it's made a huge impact. So 

[00:55:13] Katie: that's great.

[00:55:14] Dr. Linda Bluestein, M.D.: Yeah. And I like for what you were saying, Katie, I totally can relate to. And people will say the same thing to me. And I don't say you can't drink beer, but I help try to help them find those correlations and say, it's up, it's your choice. 

because if you tell somebody they can't do something, guess what they're going to want to do.

So 

you know it, but if basically I feel like my job is to help them interpret the science. My job is to help them interpret the messages that their body is sending them and helping them put all that together so that they can make the choices that will be most appropriate for them at, at, at any given time and understand the, the cause and effect kind [00:56:00] of thing.

[00:56:01] Andrew: I have a question for you. Okay. You just said something like, if you tell them they can't do it they're going to want to do it, or if they literally don't, then they are depressed and they're not fulfilled. Do you still dance? Is that something that you care to do?

[00:56:16] Dr. Linda Bluestein, M.D.: So, so that's a great question. So I discovered, oh, I don't remember. Remember how many years ago it was. I discovered Zumba and I became a licensed as a Zumba instructor and 

[00:56:26] Katie: Cool. 

[00:56:27] Dr. Linda Bluestein, M.D.: love, zoom, but it is so incredibly fun, but I also have to be very careful because if I just let myself go and, and have a great time I, one time I ended up like paying for that for months and other times for a shorter period of time.

So I have to kind of hold myself back, but, but that's the kind of dance that I do nowadays. And I, and I love it. It is so much fun. And I, like I said, I wish I'd discovered. Sooner. And, and you can do it in the water as well as doing it on land, it's, [00:57:00] it's just you're, you're moving to this fantastic and the choreography is like super easy to learn.

And so there's no let's stop and learn the steps and then do it. It's it's like Simon says, you're just doing a mirror image of what the instructor is doing. And so that's, I don't, I don't do ballet anymore. I haven't done that in a long time. Anyway, maybe after I moved to Colorado, I'll take an adult ballet class.

We'll see.

[00:57:24] Andrew: I did 

[00:57:25] Katie: barre yeah. I was going to say, have you ever done barre 

[00:57:28] Dr. Linda Bluestein, M.D.: I have not, no.

[00:57:29] Andrew: It's obviously the easier variations of things that are in ballet, 

[00:57:34] Katie: but you know, and mixed with Pilates, the which pilates to me, has been just so awful, but so do 

[00:57:40] Andrew: you combine, are you currently doing other forms of fitness as well?

[00:57:46] Dr. Linda Bluestein, M.D.: I am. So I, I am back in physical therapy. I I'm, I consider myself a lifer. So I I, I go in, I go out, I get depending on where, where I'm at, but [00:58:00] I'm, I'm back in physical therapy. And so I do those exercises every day and I was telling my physical therapist the other day. I think if I did all of the exercises that I've been prescribed to them even if you just discount the ones that are not relevant right now, but if I did all of the ones that I really should be doing right now, I could probably feel like every day doing that.

But so I do that. I do, I do my physical therapy exercises I intermittently we'll do Zumba. And I also go for lots and lots of walks. I love walking. Fortunately we have a dog, so we take the dog for lots of walks. Sometimes in the summer he's not too keen on it, but try to get outside as much as I can.

I try to exercise in the pool as much as I can. And after my move, I'm going to have so much more ability to do that. So I'm super excited about that. And sometimes I'll hop on something like an elliptical or our trainer or something. Although I try not to do that too much because of the [00:59:00] repetitive motion in one plane, kind of a thing.

I feel like the endorphin rush that I get from doing Zumba again, I have to keep in mind. That while you're doing it, you have the exercise induced hyperalgesia, which is the opposite of opioid induced hyperalgesia. So while you're doing it, you're not feeling it's like you're sitting on the beach and you're getting a sunburn and you're not aware of it while you're doing the class.

You might not be aware. So I tell people all the time that it's not, what can you do, but what can you do the next day when you do that same activity the next day, or in the, in the instance of strengthening your muscles, we know that you can get Dom's delayed onset muscle soreness, which is a great thing.

In fact, that's my goal. After I move is to have sore muscles again. It's been awhile since I've been able to work my muscles hard enough without hurting my joints, that my muscles are sore. So that's, I don't want to say that's an exception to my rule, but that's if your [01:00:00] muscles are sore, but you can still walk walk the dog and stuff like that.

That's very different than if you're like you're in bed cause you can't do anything. So I think that I'm hoping that I'm going to be able to do a lot more. Once I'm in a permanent location right now, I'm in a rental house and we knew this was temporary. I, I really want to get with somebody to be able to do Pilates on a regular basis.

As you mentioned, Katie, I love Pleiades. My co-host Jennifer Milner is a Pilates instructor works with a lot of pre-professional hyper mobile ballet dancer. She coaches them and she's an amazing resource for bendy dancers. So it's it's, to me it's like constantly adjusting. The the program to best fit wherever I'm at 

[01:00:46] Detached audio: at 

[01:00:46] Dr. Linda Bluestein, M.D.: that point in time.

[01:00:48] Katie: we kind of encourage that with the test and retest. With people in the community. As far as introducing new activities, it's kind of a test, try something like, go easy with it, try it and then see how you [01:01:00] feel. use that as a gauge of whether that's something you should do again, or maybe you need to modify it further.

Trying to teach people that, because a lot of people will say hypermobile or not went and joined this group exercise class, but then I got hurt and then I couldn't do it. Like every time they try to go and work out or strengthen, they get injured. So then they stop. And so trying to help them and gradually, and that's where we really start with the very, very basics and foundational movements to build people up, but also to help them their own threshold so that they're not relying.

But a lot of times, by the end of the program, people are better at coming up with their own modifications or advocating for themselves then versus relying on the group exercise instructor. Like my wrists hurt when I do. Who knows what kind of modification you're going to get, if any, but you know, when they know they're for themselves, what they can do, it's just we find good 

[01:01:56] Andrew: outcomes with, yeah.

Treat yourself like a science experiment was kind of 

[01:01:59] Dr. Linda Bluestein, M.D.: Yes. 

[01:01:59] Andrew: [01:02:00] and really just explore the capacities of well your capacities. Not necessarily comparing yourself to other people and what they're doing, really 

[01:02:09] Dr. Linda Bluestein, M.D.: mmhhhmm 

[01:02:10] Andrew: constantly having this explorative approach to movement and obviously your mindset, mindfulness and being as open as possible to all types of movement. I did CrossFit for seven years and if I had done CrossFit. A majority of CrossFit coaches, I would not have done CrossFit, but this guy me from the ground up. He saw that I absolutely had no idea how to move my body. This was post disc injury side, herniated, my disc L four L five 10 millimeters.

And I had sciatica down both legs for a couple of years. And he's you need to come to my gym. And I'm like, why would I do that? CrossFit hurts people. he's no, no, no, no, not the way I do it. And he took me in and I didn't, I didn't have a weight for a months and he just [01:03:00] slowly worked me up.

And so I'm grateful that man taught me a significant amount of about what I know today. And his name's Mike Coopman he doesn't train or do anything physical anymore. His military Yeah, those people, you just have to keep exploring and looking for those kinds of people that are willing to start you at the ground level and slowly work you up over time.

Very patient, meticulous people. 

[01:03:29] Katie: Yeah. I think that approach is great. I know for me, even going to physical therapy, I've had a couple of physical therapists before I was diagnosed with EDS that I would go to them for a hip issue they would do like stretches and stuff on my hip that would just make it worse.

I go to a chiropractor and get something adjusted and then I would be like miserable for months after the adjustment. And yeah, it can be good to just start small. I'd love to hear that more about the acronym now, the, the MENS PMMS that you use. [01:04:00] Do you mind going over what that acronym stands for?

[01:04:02] Dr. Linda Bluestein, M.D.: Sure I'm happy to. So my practice is I'm an anesthesiologist, most anesthesiologists that do pain management or intervention. Pain management physicians. So they're doing epidurals and all kinds of stellate, ganglion blocks, CLA they're doing all kinds of blocks and trigger point injections, those kinds of things.

And I felt that there were enough people that were doing that. I've done lots of epidurals over the course of my career and, and, and some of those different things. But I really felt that somebody needed to take a medical approach to treating people with PR. I like to call it persistent pain. That that's what I use, or I try to remember to call it that that's what I like to call it.

And so when I'm working with somebody that has persistent pain, I feel like it can be helpful to help them remember. And for me to remember the different parts of their care plan that make it a comprehensive care plan, as opposed to usually if you go into your [01:05:00] PCP or somebody else, and you talk about your persistent pain they don't have that much time.

So they kind of have to give you. A couple of quick things or one like the, write your prescription for an anti-inflammatory and off you go. But for me, what, what my goal is to help people develop a comprehensive plan. So the acronym is men's P M M S. So the, the first letter M stands for movement that's because movement to me is absolutely the key and it's moving better first and then moving more.

So just people just going, and I love what you said, Andrew, about that we are each our own science experiment. That's brilliant. I love that because it really is so, so true. What works for another person is not going to be what works for you. So learning how to listen to your body, learning how to move in the proper ways, learning how to use the correct muscles for XYZ movement.

Because I think oftentimes [01:06:00] people forget. They want to be able to move around and do their day to day things, but they forget, like if you just sit on the sofa all day, you're, that's not going to happen. your muscles are not going to be able to do those other things for you. So we have to keep, we have to keep moving if we want to move.

So that's the first letter, the second letter E is for education. So it's the pain neuroscience. It's understanding what's pain. Catastrophization what, why is trauma so important? Why are anxiety and depression so important? How does the processing of pain signals work? Why does stress make pain worse regardless of the cause of the pain, things like that, the N stands for nutrition.

What are the different variables of the food that you're consuming that may be impacting your pain? single time that we eat, we change the chemistry in our body. So what are we eating that could be making our pain worse? What are we eating that might be making our pain better and kind of sorting some of those things out.

Also keeping in mind though, we want to make sure not to. [01:07:00] Push someone into disordered eating so we want to be thoughtful that, especially because I work with a lot of dancers and, and they're at risk for that already anyway. then the S stands for sleep super, super important.

As you already mentioned, Katie. So many of my patients are sleeping poorly or they're sleeping during the hours that they should not be sleeping. They're going to bed at four in the morning or five in the morning or six in the morning. They're going to bed at that time. And it's no, your circadian rhythm is so important.

And I understand some people are night owls, but you know, it, you're, you're working against biology when you do that. So I'm working on getting better quality sleep, getting restorative sleep do they need a sleep study? Are they having obstructive sleep apnea? Are they having central sleep apnea?

Are they having sympathetic nervous system dysregulation while they're sleeping, things like that. So that, so that's the first word. The. And then the P stands for [01:08:00] psychosocial. Does the person need to get into some kind of a support group? Would they benefit from one-on-one counseling?

Which, which I believe that everybody deserves to have that, and that that's a very important thing for every single person. And there should not be stigma attached to that at all. I think people are brave that that, I mean, I see a counselor, it it's helpful for all of us, no matter where we are, we are at it just gives us somebody that we can bounce things off of and somebody that we can just it's a confidential.

Place that we can share our thoughts and our feelings and it can help improve our relationships and things like that, and our relationship with our body. So that's what the P is for. And then the next M stands for modalities. So that could be working with like red light, laser acupuncture, acupressure foam, rollers Graston technique and different types of things like that.[01:09:00] 

And then the next M and you'll notice, and this is where it probably, I made this confusing before. So Katie, I appreciate you pointing this out. So this is the third M but it's the second am in that second word. So it's, men's P M M S but I like to point out that it's the third M because it's medications, but I intentionally put it as the last. The mistake that I see people, a lot of people make is they think that they're going to get some magic pill and that there's one thing that's going to fix all their problems. And unfortunately we don't have that magic pill yet. And I don't see a magic pill coming anytime soon on the horizon. So that's why I feel that this more broad approaches is helpful.

So that's, so that's medications, it can be a wide variety of different things. And then the last letter S is for supplements. And also I had sleep before supplements [01:10:00] because, no amount of supplements is going to make up for a poor diet. And although supplements can be useful for correcting magnesium deficiencies or stabilizing mast cells or helping with micronutrient deficiencies, or maybe you live at a high Northern latitude and you don't make enough vitamin D and things like that.

So that's, that's the acronym that I use.

[01:10:23] Katie: That's great. I love that. And I love that you intentionally I love the description of why. Yeah. Why the third M is medication. 

[01:10:31] Andrew: I do want to point out the psych, the psychosocial part, the getting therapy. I just want to say that both Katie and I have had extensive self-work we've done a lot of work.

Seen therapists even had worked with a couples therapist and it's just really important stuff because you don't know what you don't know. And it's really helpful to have someone point out your blind spots and to be able to think more openly. So I encourage, I think 

[01:10:56] Katie: so many people also treat or think about therapy as something you do when you have a [01:11:00] problem and thinking about it, like people are like, oh, you went to a couples therapist, like what was going on?

And we're like, well, nothing but. I don't know. We wanted to, yeah. We wanted to really kind of invest. We both had relationships that didn't work out and our relationship is really important to us and the healthier, our relationship is the better we can show up for our kids. And so I don't think you have to have a problem per se to go do therapy.

 

[01:11:28] Dr. Linda Bluestein, M.D.: Wait, if you wait until things get really, really bad, then it's a lot harder. So 

[01:11:33] Katie: yeah. 

[01:11:34] Dr. Linda Bluestein, M.D.: why I say to people you deserve to have a counselor,

[01:11:40] Katie: Yeah. I think it's,

[01:11:42] Dr. Linda Bluestein, M.D.: Yeah.

[01:11:43] Katie: I think getting established with a therapist. Oh, do we have a sneeze happening? I think getting established with a therapist is in my mind a lot, like getting established with a good primary care physician. And I think sometimes people maybe that don't have any medical background don't necessarily [01:12:00] realize the importance of that.

But if you're established and you already have a good rapport and they know about you, and then when you do have something flare up emotionally, and you can go to this therapist who you already trust each other, you already know each other. And you can say, here's this thing that happened. You don't have to start over from the ground up building this whole relationship and same thing with a primary care physician.

I know that's something that I get on you about because he's I'm healthy. I don't need one. And I'm like, no, you do need one because you're healthy until you're not what happened. If you got in a car accident tomorrow, like you still need someone orchestrating advocating for you and able to refer out, like when you get discharged from the hospital, it's always follow up with your PCP and then the specialists and you, you just have to have that.

And I think so many people don't don't understand that. I also really liked what the medications being kind of de emphasized. I, I think we're in this world on social media where there's a lot of, I would consider us to be more along the lines of like integrative or holistic [01:13:00] or, and I think there's so much all or none mentality.

People are very anti-medication medication is bad pharmaceuticals, big pharma. And I think that it's incredibly helpful in some cases, absolutely essential for people. I think with my nursing background, I would often see patients who would come in with a bag full of medications that they couldn't even tell you.

I don't remember what that one was for. And it was like, I take this one for the side effects caused by this other one 

[01:13:26] Dr. Linda Bluestein, M.D.: yep. 

[01:13:26] Katie: side effect caused bets. It's okay, like you need to almost get a clean slate and really look at what do you actually need. And I think, again, that's where the primary care physician comes in.

Some of these people, it's like, well, that was prescribed by my neurologist. That one was by my dermatologist. That one was by my pulmonologist and no one they weren't getting an accurate history of what meds they were already on. And so it's you have to have someone just overseeing all of that

[01:13:55] Dr. Linda Bluestein, M.D.: totally totally agree. And sometimes people they they'll get a [01:14:00] medication that's PRN, so it's fun as needed basis, but that isn't 

communicated properly. 

[01:14:06] Katie: mean, just take as needed 

[01:14:08] Dr. Linda Bluestein, M.D.: Yeah. So if on your prescription it says PRN, or if the pharmacist, I think usually writes out as needed, but like when I write a prescription, I might write PRN, like there's a box to check for people.

But if that doesn't get communicated effectively, I see this all the time. They're taking this on a regular basis. They're taking it every six hours or whatever it is no, no, no, no, no. This was only supposed to be if you really needed it. So now they've got an, and you're exactly right, Katie, about the, taking this to, to offset that.

And next thing you've got so many things going on that it's hard to sort out what's doing what yeah.

[01:14:41] Andrew: and I'm a fan of there's a woman recently who said I'm ashamed that I'm taking Penn med pain medication. She's got a horrible disc herniation. I'm like, no, no, no. You're taking this medication and you're also taking action on improving it in a variety of ways. So continue the medication. I think.

When there isn't a [01:15:00] plan set in place for them to make improvements. And they're just kind of taking the medication as their last resort. That's where things kind of, 

[01:15:07] Katie: or is there only if that's their only thing that they're doing to treat the issue it doesn't doesn't have any future plans of coming off of it or, or what else they can do.

[01:15:18] Dr. Linda Bluestein, M.D.: And I'm glad you brought that up, Andrew, because in our society, like the pendulum swung from anybody with a chronic pain problem can get opioids to, nobody can get opioids, even if you've had surgery. And it's oh dear God. I mean, it's just swung so extreme. And I'm not a fan of opioids for 99.9% of EDS patients, except for maybe that they have a small amount at home for an acute event that happens.

So they have it on hand. They don't have to then rush out to the pharmacy. I think that's totally fine. But taking them on a day on a chronic basis taking long-term opioids, cause you always have to think about what's the endpoint, right? Is this to [01:16:00] get somebody through something happened something acute happened and you're trying to get them through that or is this no, we're never going to be stopping it because maybe somebody does have an intractable pain problem.

I treat a lot of people with what's something called adhesive arachnoiditis and that's when the arachnoid layer gets inflamed. Yeah. And starts to stick and it can actually become calcified and people can be an extreme, excruciating pain from this. And sometimes you can get it to reverse.

Although once it's calcified, no, you're not going to then. But we also though have gotten in, in our society to a point where there is so much stigma and it is so hard to get opioids, even for the patients who need it. So we need to understand like how to select the proper patients for any given medication, not just opioids, but those in particular, because of the problems that can be associated with that.

So yeah, we need to be careful not to paint. Too broad of a brush for any given thing. For example, [01:17:00] hyper-mobility disorders or connective tissue disorders people will they may seem on the surface, like they're very much alike, but once you really dig deep into the details of their clinical picture, they can be very different from each other.

So.

[01:17:15] Katie: On the topic of movement. So because we teach a lot of movement on social media, and I know you're active on social media too, and I'm sure you the more people that follow, the more comments you get, both positive and negative. So we've always, always kind of taught posture alignment, kind of corrective exercise.

And we started being challenged by physical therapists who are very into evidence-based physical therapy due to some studies that showed that there is not a strong correlation of posture with 

pain 

[01:17:55] Andrew: According 

to them 

its 

[01:17:57] Katie: all studies. 

All yeah, they're, they're very all or none. So they're saying [01:18:00] there's no correlation between posture and pain and you shouldn't ever tell people that improving the posture is going to improve their pain.

So we've definitely changed our wording in our approaches around that, but yeah. I guess what I wonder or what I, I'm curious about your opinion on is do you think that that's different in the hypermobile population? my experiences any equals one, but I know for me, focusing on posture and strengthening in a good alignment absolutely has an impact, especially neck for me is a big one, just resetting my posture throughout my day makes a big difference in how my neck kind of holds up throughout the day.

So I'm just curious what, what your thoughts are on that. Cause I think it can be hard to be kind of under a microscope on social media sometimes. And also know that maybe the, the demographic that you're referring to might not be necessarily the people represented in the studies. So.

[01:18:56] Dr. Linda Bluestein, M.D.: Right. Well, and I think it's important to think about what is [01:19:00] evidenced based medicine, evidence based medicine sometimes abbreviated as EBM looks at studies and how they may or may not apply to the, a certain population. But what we forget often is really research there's formal research.

And then there's the less formal research that we learn from working with people. And unfortunately busy clinicians don't have time to write papers and try to get them accepted into journals. And they don't have the contacts like people at an academic center. So if we just go by evidence-based medicine, like I wouldn't be doing anything with anybody because there is no.

There's no approved treatment for EDS. There's no if I just stuck to that I would be so much more limited in what I was doing and, and my feeling is every single thing that I do, I need to be [01:20:00] constantly weighing the risks and the benefits, both for me personally, and for me, professionally as I'm advising a patient or a client.

And so okay, well, what's the downside of working on posture and alignment and trying to strengthen in those things. It's it's like when I'm working with somebody and I'm talking to them about nutrition or sleep, or what, some of these kinds of things, it's one thing if you're going to prescribe cancer chemotherapy.

Yes. Then you, I mean, you need to have studies to back up which is the best drug, but when you're talking about there is no pill or approved treatment for these conditions. What are your choices, you can say, okay, I don't have anything to offer you. Good luck. Or you can say let's try some of these things that logically makes sense and, and have worked for me.

And I've worked for a lot of my patients and that's the evidence that I have to go on. What I know about science, what I know about medicine the way it works with prescribing [01:21:00] medications, oftentimes we prescribe things off label, which means that the medication got approved for one use, but we actually prescribe it for others and physicians in the United States.

We can prescribe things off label. And I do that all the time. Everything that I prescribed for EDS is off label because there's no on-label.

[01:21:18] Katie: when, you do that as a physician, does it, are you, are you making yourself more liable or is it like risky for you to prescribe off-label medications? I seem like some physicians are resistant to doing that. I'm just wondering.

[01:21:32] Dr. Linda Bluestein, M.D.: So, so I guess again, as an anesthesiologist in the operating room, there were things that we did that, and I'm one example that I can think of that I'm pretty, I haven't researched this recently, but I'm pretty sure that this is correct. That fentanyl, the opioid, that we would use IB during surgery, not not uncommon laminate is a super common drug for us to use this as the many, many years before it [01:22:00] ever became a problem like on the street or whatever.

But it was the most common opioid that we would use in surgery where we would also add it into epidural infusions a really low concentration for a woman having a labor patrol or something. I believe that fentanyl. Is off label for use via epidural. I think, I think that's an example.

That is, that is technically correct. If that's not an, an technically correct example, there are a million other examples that in anesthesia you're constantly using things off label, I guess, is what I'm trying to say in the operating room all the time you're, you're just, you're, you're altering your anesthetic technique for what's best for the patient.

Not what's best for the lawyers have approved this drug for this because what happens once once a drug has been approved, the drug company is not going to fund further research to study these other [01:23:00] applications because they're not it's, it's going to cost them a lot of money and they're really not going to gain that much from it.

So usually they do a lot of research to get the drug on the market. And then after that not, not as, much happens. So. So, I mean, yes, you could see on the one hand it does, but on the other hand, it's such a common thing in medicine. It's I mean, it's just, I can't really think of a good example right now of like going to a restaurant and you order you're ordering an omelet and you want to substitute out one of the ingredients and it's just not a big deal for them.

It's kind of, it's kind of like that. It's okay, you're subbing out one thing for another thing, because you, because you know that the evidence may not be there from a research standpoint, but lots and lots of people are doing that. And it's, there's lots of scientific reasons why that should be a useful strategy.

[01:23:54] Katie: that makes sense. 

[01:23:55] Andrew: Shiloh sent something saying, in fact, one in five prescriptions written [01:24:00] today are for off-label 

[01:24:01] Katie: use. Okay. 

[01:24:03] Dr. Linda Bluestein, M.D.: Um, 

[01:24:03] Katie: looking up little facts. if we're leaning forward, we're just trying to see what Shiloh's sending through. I have another question for you. Working with dancers, this is another thing where I kind of hear two different sides of the coin.

It's something that Andrew and I don't always agree on. But so for people who hyperextend say elbows or legs, do you. Discourage them from hyperextending or would you encourage them to strengthen in the full range of motion? Even if that range of motion is into hyperextension?

[01:24:39] Dr. Linda Bluestein, M.D.: so it depends on the joint. So before COVID I would give talks and dance studios and all the time dancers would be leaning back on their hyperextended elbows and I'd be like, no, no, no, don't do that. There is nothing. pleasing about a hyper extended elbow. So for, for upper [01:25:00] extremities my, my thinking is more strengthen in the, in the more normal range of motion and, and work on improving joint alignment and joint stability, and th and things like that, because that's not, you, you're not going to gain any, anything aesthetically when it comes to the lower extremities.

And I'm thinking of the knees and ankles in particular, but let's just talk about the knees probably a lot of people listening are going to be familiar with almost like the S curve the, of the hyper hyperextended knee and height, and hyper flection of the ankle. And and that has become over the years more and more desirable, like for example, in classical ballet, To a point you also get the leg starts to get shorter if you get too much of that.

And it depends on if it's the working leg or the supporting leg. So let's say for example, you're standing on point on the left leg and the right leg is the working leg. It's okay to go into a little bit of [01:26:00] hyperextension in that right leg so that it, you have that beautiful line. the left leg, I would really prefer that left leg to be in a more proper alignment and B and B more, 180 degrees and not being back knee kind of a thing.

And that takes a lot of work on. Strengthening and control and things like that. So to me, it's, is it the gesture leg or is it the supporting leg? And I'm also working on proprioception because we know that in people that have hypermobility, oftentimes proprioception is impaired. So you can tell a dancer all day long, stop doing that, stop doing that.

They have no idea what you're talking about because they don't feel it in their body. So retraining that can also be very helpful and and also helping them to understand that maybe a little bit of that is okay, but, but too much of it actually is not aesthetically pleasing either.

So finding that, that sweet [01:27:00] spot and, and strengthening through the entire range, but with a lot of control and, and more slow movements, rather than you, you definitely don't want to be jerking into those hyper mobile joints or, or locking out your joints. Cause of course that requires. Less energy must less muscle tone and things like that. But so we really want to work on that muscle tone and joint stability.

[01:27:25] Katie: To be 

[01:27:25] Andrew: clear. I agree on all of that. 

[01:27:27] Katie: Yeah. I'm like, that's pretty much the, the kind of or agreement, or I guess after a lot of conversations on this I think what we, mostly, what we agreed on is actively getting into a full range of motion and actively strengthening a full range of motion seems fine and actually seems really helpful in our experience, but passively getting into that range of motion.

So like hyperextending in a plank is not really helpful if [01:28:00] you're not getting there actively. If you're not loaded and you're able, that's your range of motion and you're able to strengthen through that unloaded then. Great. And we did 

[01:28:10] Andrew: just like progressively loading into that.

So if it is if it is a hyperextended elbow actively getting into that position and then resisting in in deflection extension from that position with very small load, but obviously our upcoming program, I'm having people work within their mid range isometrically first, then active range of motion.

And then the last thing in the program is going to be end range strengthening, which is fairly optional for the population, but kind of giving people the option of if you'd like to increase resiliency in this end range, if your elbow ad does ever end up explosively hyperextended, are you able to create some tissue some strengthening in the muscle fibers to help prevent excessive [01:29:00] injury if there is going to be that? 

[01:29:03] Katie: Yeah. And I think we see a lot, even, like I said, in the population, that's not hyper mobile, even with appropriate reception and people not understanding when you say. Th they're just unaware that they're even doing things. So in our community, people will record themselves and upload a video and we'll look at the video.

And a lot of times we just encourage people, even if you're not going to upload the video, record yourself and look at it because of what you think you're doing and what you're actually doing. A lot of times, they're not the same or set up a full length mirror so that you can see what you're doing. I'm just trying to encourage people to get body awareness.

[01:29:38] Dr. Linda Bluestein, M.D.: Yeah, that's a really good idea. Right? Better body awareness is good for everybody. And I like the idea of, of working on strengthening and control in that mid range first. And then yes, because that's, that's going to be a much better approach than because what ends up happening with a lot of people?

A lot of people that I see, we ended up getting [01:30:00] tighter and tighter and tighter because of. W we have pain, then we start to not stretch and then we can actually get a lot of stiffness in our tissues and we can, next thing like you're super tight and you also have a lot of neural tension and, and and that's not good either.

So it's, it can be tricky to navigate. So it's really important to work with people that have the expertise that can really help you again, interpret that information that's coming from your body and be able to conduct your own science experiment in a really thoughtful and intentional way.

[01:30:35] Katie: Yeah, I think it's, I think it's also important in the world of social media where people put out things that are catchy and get likes and comments and views, like Andrew's deadlifting video. There were a lot of, I guess, conflicting comments, like said that he had EDS and he was lifting a lot of weights and some people squat video, some people are like you shouldn't do that.

And some people like that's great. [01:31:00] think we talked about it afterwards. We kind of said what I think a lot of these people don't realize and what, I don't know if we articulated well enough in that post is that this didn't happen in a month or a year or 

[01:31:12] Dr. Linda Bluestein, M.D.: Well, 

[01:31:13] Katie: Like he's been weight training and building up to this for to get to this point.

And so I think a lot of times people see things, whether it is some crazy yoga pose, range of motion or whatever, they don't realize that this is something that people have spent decades being able to achieve safely. It's not 

[01:31:31] Dr. Linda Bluestein, M.D.: right, 

[01:31:32] Katie: just go out and 

[01:31:33] Dr. Linda Bluestein, M.D.: right. And just, and that, that just because I am sharing this does not mean that I think that this is a realistic goal for you, or 

that I'm suggesting that you try this 

[01:31:47] Katie: Yeah.

[01:31:47] Dr. Linda Bluestein, M.D.: Social media is very tricky

[01:31:50] Katie: It

[01:31:51] Dr. Linda Bluestein, M.D.: and you're right. When you get you, you guys have more eyeballs than I do a lot more, but yeah, as you get more eyeballs, you [01:32:00] definitely get more positive and negative comments and critiques. And sometimes it's really helpful because it's oh, I didn't even thank you for pointing this out. I didn't and, and I appreciate those 

kinds of things when they're done with Hey, Hey, we wanted to give you an FYI, but then when it's just 

Yeah. it can be, it can be

tricky. 

[01:32:20] Katie: A great place to do that for listeners is usually DMS versus comment. If you're going to critique someone like a respectful DM critique is probably going to be better received than a kind of snarky comment left on a poster. Yeah. And I 

[01:32:33] Andrew: think I've learned a significant amount from the people on social media.

Over the years, I've been on Instagram since 2014, no 15, and grew in accounts at 1.1 million followers. And there was an extreme amount of, of comments coming in negative and positive. And I had the opportunity to learn a. 

[01:32:56] Katie: Ton of right here, willing to do it changed how I train [01:33:00] people.

I think if you're willing to put your ego aside, cause it can, it can become instinctive to get defensive. And you don't know I know more than you do get defensive and then like after you get over the initial defensiveness going, okay, there's probably a few people have commented something similar.

There's probably something for us to learn here. Let's look into that. On also kind of a correlated topic with social media I'd like to ask your opinion on party tricks. I know that's something that I hear just the general recommendation of don't do that. Don't do party tricks. I'm just wondering where, cause that's another thing that we don't agree on.

I'm you need to 

[01:33:37] Andrew: clarify that. 

[01:33:40] Katie: So Andrew does party tricks a lot. I, I don't do them very often. If we're filming, I might show something like my shoulders show, like a very clear sulcus line. Sometimes I'll show that, but I don't like to because. It frequently will result in a little bit of pain afterward.

Now, I don't know [01:34:00] it's the fact that he's male and I'm female or just two different people or that he's than I am or what it is, but he does more party tricks and he says it, he doesn't, it doesn't hurt him at all. He doesn't feel anything. I'm kind of like yet, but I don't know if it's the best thing to do.

And I hear some people give that advice and he's but how do you know? You're just assuming that I'm going to have pain. What if I never have any pain? What if doing these actually strengthening in that range and preventing the pain? So I'm just curious what your opinion is. Cause it's something that we, we kind of clash on frequently.

[01:34:33] Dr. Linda Bluestein, M.D.: Yeah, no, I, I 

[01:34:34] Detached audio: definitely, 

[01:34:35] Dr. Linda Bluestein, M.D.: this is something that I discuss with my patients who are circus artists and who are dancers and, and I created a real, that was one of the more popular ones that I did on the four phases of, of EDS that, that I see, this is not a studied thing. This is because I wanted people I wanted, I tried to make it like a fun thing for, to help people to understand that just because you don't [01:35:00] have pain doesn't mean that you won't at some point in the future.

So there's kind of the fun phase where you can do all those things and, and so what I do in my, in my clinic is I ask people to show me their party tricks and, or depending on if it's virtual or in person or however I'm doing the assessment. But, but I often will, will either take photos of people doing their party tricks.

I'll ask them to take photos. I think it's important to document those. Like for the bite and score touching the thumb to the forum. I never touch people for that. I always have them do it on themselves. I know some of my colleagues will forcibly do that on people and it's that's a great way to hurt somebody.

So I don't ever do that. I let them do that on themselves, but I do tell people to take photos because later on in life, if someone's challenging your diagnosis or something, and you can't do that anymore I think it's helpful to have those photos stored someplace in your computer that you'd be able to find them.

So, so that's one thing is the, is [01:36:00] the documentation piece. And I, and I do ask people quite frequently to show me their party tricks because I want to see what are the things that they, that they can do. And then oftentimes. A videotape and I'll say don't ever do that ever again because yeah, they're doing all kinds of weird crazy stuff, but I think it is important to have those things documented.

And oftentimes I call them circus tricks. So if you're in the circus, you know, it's a totally different situation than in than if you're not in the circus. So I think it's being very thoughtful about the risk benefit of everything. So if you're in circus LA and you're getting paid to do certain types of, of skills that might be risky for your body, but this is something that it's like a football player, that they have a risk of concussion.

But, but of course you're going to wear a helmet and [01:37:00] you're going to do everything that you can to modulate that. But I think that it's, if you're in the circuit, You're going to have to take a little bit different approach than, than your, than your average person walking around that you should be trying to figure out how, how do I get the most functional that I possibly can, the best quality of life that I possibly can and being proactive.

I do agree. Don't wait for something to hurt. And it depends on what the trick is that you're, that you're doing, because that's part of the problem. It's if you take my son sunburn example, while you're sitting on the beach, you don't feel the fact that you're getting sunburned, but even worse, you don't feel the fact that you're getting a cumulative skin damage and increasing your risk of skin cancer.

It's 

[01:37:43] Detached audio: the 

[01:37:43] Dr. Linda Bluestein, M.D.: exact same thing with joints. So if, if we're blessed to live a very long and full life we want to have our joints feeling as good as possible because that can, the musculoskeletal factors can really be a huge problem for a huge percentage of people. I think it's a [01:38:00] very rare person who really gets to, into their nineties without a significant amount of arthritis and stiffness and all of that kind of thing.

So I think that those are just a lot of things to keep in mind is there an upside for me doing these things? And if so, what is it? And I think, I think that it's appropriate to take a very thoughtful approach.

[01:38:21] Katie: So do you see clinically or anecdotally people who say, do a party trick in a specific joint? Do you see a correlation more with them having issues in that joint or pain in that joint? Down the road?

[01:38:35] Dr. Linda Bluestein, M.D.: What would be ideal would be to longitudinally study people and be able to I do have patients that I have had, I opened my clinic in 2017 and I do have a very small number of people that still see me now. What is that? Five years later. But you know, a lot of people I'll see for just a relatively short [01:39:00] number of sessions.

And then, and then I think at that point they feel like they have enough information that can kind of take it from there. So unfortunately I don't have from my patient population, I don't have a great answer to that question. But yeah, but I, but I do feel like from my own personal self and the party tricks that I have done, cause I definitely have done plenty of party tricks.

I would go back and not do them.

[01:39:26] Andrew: What were they? I feel like if you're able to. Dislocate a ball from a socket and duke, I see people do insane stuff with their arms and their hips. I feel like that's an instance. That is a bit too much.

[01:39:41] Dr. Linda Bluestein, M.D.: I would, I would put both of my feet behind my head. And I I would do that quite routinely. I would do different other things with putting my, was it, was it putting my feet? I would walk on my, it wasn't my elbows with my feet behind my head. I would, I would do different like kind of contortions like that.

I would, I [01:40:00] would pop my hip. I would pop my hip in and out, which I now realize is I didn't think I was dislocating it at the time, but now I'm very confident that that was snapping hip. That that was not, I was not dislocating a hip. I was popping my it band or something like 

that. But, but I would still go back and not do that because that is now the hip, the hip that I used to do that on the most is the one that I've had problems with. And obviously that does not prove anything that, that means nothing in terms of cause and effect. 

But 

if I, if I, were to go back, I mean, I used to do that all the time, literally at parties, I would Hey, check this out.

And, and, and do things with my, with my with my hands and elbows and A variety of things, but the 

hip was one that I, that I definitely distinctly remember. And then, and then cracking my ankles a lot, like pulling them into extreme flection so that they would [01:41:00] do like a clunking thing or my elbows, well, not my elbows, my shoulders definitely used to sell blocks and get, get pretty far out of joint.

I could pull things on really, really tight and get it squeeze into tight spaces and stuff like that. I just, I just wouldn't do those things if I could do it over again. Now that in 

my fifties, 

[01:41:25] Katie: Yeah. I feel like in my teenage years and twenties, that was always my shoulders. I always kind of gross people out and I would do it a lot and I never felt anything. It was fine. And then I feel like it was toward the end of my thirties that I started to notice that when I did it, I didn't feel anything.

But then afterward it was kind of like the muscles were like, whoa, what are you doing? And everything kind of clamped down. And that's when I kind of went, I don't know if this is, I mean, it's just not do as much. And Jill Miller too, when we talked with her, I mean, with her hip she had a full hip replacement and she had been doing crazy splits and 

she kinda had a similar story of I wish I had [01:42:00] known 

[01:42:01] Andrew: it makes me wonder, because. Obviously the finger things I did a lot of, and now at this point they're a little bit tighter and I can't do that. But I'm able to walk on my, the, my, the bottoms of my toes or sorry, HyperFlex, so that I'm on my metatarsal 

[01:42:17] Katie: and 

[01:42:18] Andrew: that's something I've done my whole life. Like I'll wash dishes or brush my teeth and I'll find them.

I have my right foot just kind of turned over and I've done that since I was a little kid. And it makes me wonder about just testosterone versus whether or not me having more testosterone has prevented me from having any like issues in these areas or if it's a yet thing. But all that's another question is how many men do you see on a daily basis that

[01:42:45] Dr. Linda Bluestein, M.D.: I do. Yeah, I do. have male patients and I definitely testosterone is protective both from the standpoint of having more muscle mass. And so it's hugely beneficial in that regard, but there's also some studies showing that testosterone is [01:43:00] protective in terms of pain processing as well.

But we know that testosterone goes down as we age, so it's that's common 

[01:43:08] Detached audio: for 

[01:43:09] Dr. Linda Bluestein, M.D.: testosterone to go down as we age. So I yeah. As soon as you mentioned that, I was like, oh, that makes me cringy. Yeah, because a lot of those things right. Are just, are just habits. I mean, I would be 

telling patients that don't, don't do whatever, whatever, and then I would find myself doing it.

I'm like, you just have to stop it. It kind of there's that brief that it feels good. And then, yeah, but you just, you just have to kind of try to catch yourself. But I do have male patients and they have I've more female patients than male patients though. Definitely by, by a lot. But I have male patients, I have, I'm thinking of one male patient.

I think he's in his late fifties, maybe that, that only was re I diagnosed him with, with EDS and he was not diagnosed until, until now. And actually [01:44:00] functioned pretty well until fairly recently. And is that declining testosterone levels, a lot of times people have something that happens.

It's an injury, it's an illness a concussion food poisoning whatever it might be. And then, and then things that starts like a cascade of events that can involve the immune system and mast cells and stuff like that. That then next thing you know, now your things that were very well controlled are now suddenly not.

[01:44:29] Katie: Got it. That's good in someone like that would someone older like that who probably has declining testosterone, is that a case where you'd look at like bio-identical therapy or anything like that

[01:44:44] Dr. Linda Bluestein, M.D.: Yeah, hormones are, yeah, hormones are so complicated. I know one of my colleagues we were talking and he was, he was like in favor of prescribing testosterone and, and, and things. And, and the challenge is in order to properly study [01:45:00] those things I mean, that would require a second discipline in regenerative medicine, hormone specific because excessive testosterone in the body.

Well, first of all, it, it increased. If you're a male, it will increase your risk of prostate cancer. And my urologist husband says if a man lives long enough, he will get prostate cancer. So we know that this is a very real thing. And an excessive testosterone in the body can convert to estrogen and that can raise your risk of breast cancer.

So it's, it's kind of one of those things where I think a lot of people think that's pretty innocuous and but it's not for free so we have to be really mindful of those things, but that's where like maintaining muscle mass or getting as much muscle mass as you can is so important because that's a healthier way of optimizing your testosterone and hormones are very much related to the gut and gut function.

So that's where again, we're eating proper [01:46:00] foods is a much safer way of having optimal hormone levels than, than popping a pill.

[01:46:11] Katie: I know. Getting down there on time. So I want to, I want to be respectful of your time. I'm just curious. What uh, what are your goals moving forward? Is, are you hoping to, when you moved to Colorado, are you doing more in-person practice or what's your long-term goal that you see for yourself? Are you looking at more at helping educate providers or just really doing one-on-one with patients or what drives you.

[01:46:36] Dr. Linda Bluestein, M.D.: I would say all of the above, but in particular, I'm really trying to reach the. The dancers who, you know, especially the female dancers who have just hit puberty and there's suddenly starting to get fatigue, difficulty sleeping. They're starting to get some pain. They're, they're starting to have some gut issues [01:47:00] and they have no idea what's going on and they have no idea that it has to do with the fact that they are hyper mobile.

And I want to try to catch my, my big goal is to catch as many people dance or not, but I just happened to be super passionate about dancers. But I want to try to catch as many of those young people as possible and try to intervene. With the right dose of the intervention we don't need to over medicalize these people.

We don't need to slap a bunch of labels on them and make them feel like they're sick or like they're, they're a patient before they need to be, but give them the tools so that they know how to manage their body in a way such that they can have a really successful life, because I cannot tell you how many people I see that, that nobody was there for them.

Well, including me, but I happened to be highly functional at this point, but I see a lot of people. They're like, they're like in bed and they can't and could I have saved that person? I don't know nobody knows. Right. [01:48:00] But I see a lot of people who they really just they, they fell down the EDS spiral and they just fell off the EDS cliff or hit the EDS wall, whatever, whatever saying you want to use and, and one thing led to another next thing they, they've lost all their muscle mass, they have pain brain. They, their quality of life is just horrible. And I've had, I've had patients that have been in wheelchairs that now are walking. I have patients that I had this one patient who was down to eating two foods, couldn't do anything.

She, she wore a, like a heavy duty looked like she was in the middle of, I dunno, an Ebola type thing. This one is really heavy duty masks. This was pre pandemic. So it was kind of really unexpected, terribly, terribly sick. And, and she's now back dancing. She dancing and ABT.

No, but she's dancing and she sent me a video of herself the other day and she's I'm doing really great. I can eat whatever I want. [01:49:00] The sooner that we catch these people, the easier it's going to be to reverse those changes. And from a selfish perspective we need people in the workforce.

We need people in healthcare. We need people like the two of you who are coaching people and helping people live their best quality of life. Because we're, we're otherwise kind of headed for, for disaster. I think. I mean I feel I cannot tell you how many young people that I get asked to fill out disability paperwork for.

And it's it, it's not, this is not good. We need to, we need to. Because it's also we get so much fulfillment from being able to do work. And for me being going from being not able to work, to being able to work and to serve other people and finding my purpose has been it gave me my life back and that's what I want to do for other people.

I want to be able [01:50:00] to give them their life back and I'm hoping that I can also do it on a bigger scale. And that's why I do the podcast and other free things, because I know not everybody can afford to come see me. One-on-one so I do offer a lot of free resources and, and the goal is to have more things like classes and giving people the tools that they need in whatever, whatever the best most efficient model is.

I mean, I can sit here and tell people something one-on-one that if they could've learned it for free listening to my podcast that's, that's a better, that's a more efficient way from the standpoint of their, their money and time and stuff like that. So if you can speak to a large group and get a certain amount of information across that's, that's great.

And that should be used in combination with one-on-one like, this is what you know is appropriate for you. So I just want to reach as many people as I possibly can. Whether you have a hypermobility disorder or not, I am nervous about our future. And because of COVID we [01:51:00] have more people that are having problems with inflammatory conditions and chronic pain dysautonomia and all of these other things.

So I really think that we need to, we really need to revisit how healthcare is serving the population. And is it really serving the population in the right way? Or what could we change that could make it better? So a lot. 

[01:51:26] Katie: That was great. Yeah. It's such a tough balance. I think sometimes too, with how, how much to challenge people or how to challenge people or how to describe to people. I think about something like disability and it's it's I just wonder is that. Best long-term like, I know it's not you have to listen to your body and not just push through.

I know it's not always helpful either, but it's like a very fine line. I feel like between dialing back and doing nothing and just [01:52:00] getting more atrophied and more disabled versus some level of, of activity and not decompensating like that, because we've had a lot of discussions about that too.

Why some people will say you guys can't have EDS, you look so healthy. And it's have a lot of challenges from it, but, but we also devote our lives to being healthy. Like we literally made it our career so that we could emphasize that every day in everything that we do. So, 

[01:52:27] Dr. Linda Bluestein, M.D.: Right Yeah, 

[01:52:29] Katie: to, sorry, go

[01:52:30] Dr. Linda Bluestein, M.D.: no. no. I just wanted to add a quick thing about disability. I think we also need to better serve people who are disabled to encourage them to work in some capacity because most people can do something. So I think that, that, that we really, if we had reform of that also we could, we could help people get the help that they need, but also encourage them to still do what they can.

But instead it's this all or nothing system. And yeah, it's just a mess, but anyway

[01:53:00] The best place for people to find me my

my website, www.hypermobilitymd.com. I'm also on

Instagram, Facebook, Twitter, LinkedIn at hypermobility MD and bendy bodies. My podcast is at on Instagram. It's at bendy_bodies and

yeah. And bendy bodies.org is where you. can access the podcast.

 Oh my gosh. I feel so honored. It was so great to chat with both of you and I just, I love getting to spend time, so Thank you so much for the opportunity. 

[01:53:52] Andrew: Thanks for listening to this episode of the Whealth podcast. If you're interested in getting connected with us in any way, you can look at the show notes at the [01:54:00] bottom of this thing. I don't even know where you're watching this YouTube, Spotify, some other platform, but look below there's a description.

It's got links on it and you can click those links. It'll take you to places that are helpful. 

[01:54:12] Katie: Everything that we referenced that will be in the show notes. We'll be in the show notes. If you would like more information from us, check out our website, www dot spread, both.com. We also have links in the description for all of our free resources that we put out, including our blogs, social media channels.

And if you want to see Andrew wearing a shirt on this rare. Check out our YouTube, where you can watch the episode or 

[01:54:40] Andrew: Spotify. And for those of you that are hyper mobile or interested in learning more about hypermobility, we are launching a hypermobility program in June of 2022. So whenever you're watching and listening to this, that will be coming out shortly.

Thank you. Bye.[01:55:00] 

Andrew Dettelbach
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