The Truth About EDS: A Doctor's Experience with Medical Dismissal with Linda Bluestein

Dr. Linda Bluestein shares her extraordinary medical and personal journey through the underrecognized world of connective tissue disorders, particularly hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Initially trained as an anesthesiologist, Dr. Bluestein faced a lifetime of unexplained symptoms—ranging from joint pain and allergies to abdominal issues and severe fatigue—before being properly diagnosed in her 40s. After experiencing medical gaslighting and dismissiveness, even as a physician herself, she finally received clarity and validation from a thorough and compassionate rheumatologist. That turning point led her to launch Hypermobility MD, a specialized clinic dedicated to patients with connective tissue disorders.

Throughout the interview, Dr. Bluestein explains what hypermobility is, how it can present both as benign flexibility and as a disabling multi-systemic condition. She demystifies common tools like the Beighton score and five-point questionnaire, and clarifies why many patients are missed under current diagnostic criteria. She also outlines the broader symptoms—GI issues, mast cell activation, fatigue, and pain—that often go unrecognized and misattributed. Her clinic offers in-depth assessments and long appointments that are not possible in traditional insurance-based practices.

In addition to her medical clinic, Dr. Bluestein runs a virtual coaching business through Bendy Bodies, where she helps clients worldwide understand their conditions, arm themselves with the right questions for their doctors, and access targeted resources including supplements and treatment suggestions. Her podcast, also called Bendy Bodies, features over 150 episodes of interviews with experts across gynecology, gastroenterology, physical therapy, and pain neuroscience. Dr. Bluestein’s goal is clear: to bring awareness, empowerment, and practical strategies to the millions suffering silently from connective tissue disorders, many of whom have been dismissed, misdiagnosed, or traumatized by the healthcare system.

***Resources & Links Mentioned
 www.hypermobilitymd.com
 www.bendybodiespodcast.com
 www.hypermobilitymd.substack.com 
 Free 15-minute coaching consult and one-on-one education available via Services tab on www.hypermobilitymd.com

***Medical Tools & Concepts Explained
 Beighton Score – A nine-point physical exam for assessing joint hypermobility
 Five Point Questionnaire – A simple screening tool capturing hypermobility symptoms from youth to adulthood
 Hypermobile Ehlers-Danlos Syndrome (hEDS) – A connective tissue disorder affecting joint stability, skin elasticity, and other body systems
 Hypermobility Spectrum Disorders (HSD) – A group of disorders related to joint hypermobility without meeting full criteria for hEDS
 Tarlov Cyst – A fluid-filled sac affecting the nerves in the spinal cord, more common in patients with connective tissue disorders
 Mast Cell Activation – An immune response issue often comorbid with EDS that contributes to allergies, GI symptoms, and sensitivities
 Complex Regional Pain Syndrome (CRPS) – A chronic pain condition that arose post-surgery for Dr. Bluestein, shifting her career toward advocacy

***Clinics, Practices, & Coaching
 Hypermobility MD – Dr. Bluestein’s out-of-pocket medical practice offering extended diagnostic visits and treatment plans for connective tissue disorders
 Bendy Bodies Coaching – Virtual, educational coaching sessions for clients worldwide who are unable to travel to her clinic
 Coaching Options – One-time or multiple sessions with supplemental handouts, tailored resources, and guidance on working with local providers
 Flat-fee medical packages – Designed to offer three-and-a-half-hour diagnostic assessments not possible in standard 10-minute consults

***Media, Podcasts, & Content
 Bendy Bodies Podcast – Over 150 episodes on hypermobility-related issues including pelvic pain, GI disorders, pain neuroscience, and physical therapy
 CNN Feature – Dr. Bluestein contributed to a CNN article estimating the affected population to be between 8 and 20 million people
 Upcoming Guest: Dr. Adrian Lowe – Neuroplasticity and chronic pain specialist featured on an upcoming episode of Bendy Bodies

Host: 

Dr. Linda Blustein, thank you so much for being on the podcast.

Linda Bluestein, MD:

Thank you so much for having me.

Host: 

Absolutely. I, you know, we haven't had anybody who has your specialty on and I know it's affecting more and more people. And so I'm kind of interested to hear first of all, a lot of, know, what it is exactly and how you work with it. But let's, we'll get to that in a second. Let's hit pause and actually just understand your background in the medical space, kind of where you came from, how you kind of grew your own practice.

you know, up until you were about that, you know, in your 40s when you got the diagnosis and kind of figured it out. Kind of walk me through what it was, you know, that your own little story and history there.

Linda Bluestein, MD:

Sure, so I grew up with a lot of medical problems. had asthma as a baby and terrible, terrible allergies, chemical sensitivities, migraines, irritable bowel type symptoms, sensitivities. I was the kid who you always had to the tags out of the clothes and stuff like that. And wanted to be a professional ballet dancer and was very, very serious about ballet, but I started to get a lot of joint pain.

saw my first rheumatologist when I was a teenager and tested positive. I thought I had lupus at first. And so I ended up realizing, OK, I need to come up with another plan. And I was very, very interested in science, interested in medicine. So I did go through the traditional path of becoming a physician and worked as an anesthesiologist for quite a while, for over a couple of decades.

Along the way, I just started getting more and more medical problems. And when I was in residency, for example, I would get these crippling episodes of abdominal pain. And I would end up either in the ER or they were doing this like extensive, extensive testing because nobody could figure it out. And when I was working then as an anesthesiologist, I started having kind of more joint issues. I had a very, very big surgery on my elbow. I had lots of problems with my shoulders, with my back.

Kind of the problems just started to pile up and then I had what's called a Tarlov cyst, which is a cyst basically in the spine that compresses the surrounding nerves. And so I had major, major surgery for that because you actually have to cut open your sacrum. And it was when I was reading about Tarlov cysts that I came across connective tissue disorders. So I was like trying to understand, like, why do I have this? And it said people with Tarlov cysts are more likely to have connective tissue disorders. I was like, huh.

So then I started reading about connective tissue disorders and I went, oh my gosh, this could explain my entire life. And that's pretty much what I hear from a huge number of my patients and my clients that once they start reading about Ehlers-Danlos hypermobility spectrum disorders, they're like, oh my gosh, this really makes a lot of sense. So I went to a couple different rheumatologists. The first one really blew me off, totally gaslighted me. The second one though really took me

Host: (03:00.8)

Why? Hold on. Let's do why. Why does that happen? Because that's the story you hear all the time, especially when you come in because it's different with you. You're a doctor. You're an MD. You've done the research. You're not somebody who's just quoting, you know, WebMD or Google or Reddit forum. Why did they blow you off?

Linda Bluestein, MD:

Yeah.

Linda Bluestein, MD:

Yeah, it's

Linda Bluestein, MD:

Yeah, it's a good question because this guy's wife was an anesthesiologist that he told me about this and it was in 2012. So it was, you know, well before the 2017 criteria were introduced. But, you know, this guy knew about hypermobility for sure. He had me go through the bite and score. But literally when he walked in the door before he even saw me, said anything to me, he said something like, oh, you want to have something wrong with you. And I was like, what?

Of course, I don't want to have something wrong with me, but I know that there's something wrong. Like, I don't want to have an autoimmune condition. I don't want to have RA or, you know, psoriatic arthritis or lupus or, you know, Sjogren's or any of these things. But I know that there's something wrong. I get injured so easily and I don't heal well. And now I had this surgery for my tarlov cyst. This is after my tarlov cyst surgery now that I was trying to figure out what the, you know, what the problem was. Because I did do very, very well after my surgery, but I still had other pains and things like that. And I think he just saw me as a, you know, middle-aged female. I was still working at the time, but yeah, I don't, I think he just, I don't know if he was at a point in his career that he was really burned out and just didn't have, you know, compassion left. I was with my mother. I remember this appointment very, very vividly because I also read my note afterwards and there were so many, incorrect — factually incorrect — pieces of information like surgeries. He had like the wrong surgeries listed. And it's like, okay, no, I never had surgery on that body part. had surgery on a different body part.

Host: 

Hmm.

Host: 

It was just wrong on his chart or he was misreading it or you what do mean he had it wrong? Okay.

Linda Bluestein, MD:

It was wrong in the note in the note that he wrote about me. He wrote things that were incorrect. So

Host: 

Okay, so he was like clearly rushed and he misread your chart and wrote his own notes and wow, just seems like a total, you know, S show. I don't wanna say that. Wow, okay.

Linda Bluestein, MD:

Correct.

Linda Bluestein, MD:

Yeah, well, yes, it was. Yes, it was. Yes, it was. And when I went to see the other rheumatologist, it was a completely different experience. I did not feel rushed at all. He was with the Marshfield Clinic. Is it okay to say his name?

Host: 

Yeah, I mean, if it's positive for sure, yeah.

Linda Bluestein, MD:

I've literally never said his name before during any of these interviews, but he recently reached out to me. So I want to mention his name, Dr. Jerry Goldberg. And he really took the time to not just do the Beighton score, which is the, you know, touch your thumb, forearm, and these maneuvers. He checked all the joints in my body. He did like a really thorough exam, my shoulders, my knees, my hips.

And I think he had a student with him, if I remember correctly, he either had like a resident or a Medical student with him and he was pointing all these things out and he really did a very thorough assessment. And he said yes, you're definitely hypermobile and I think you have either classical. He actually said either classical or hypermobile EDS now at that time. This is in 2012. We had different groups at that time than we have now

And it wasn't until I went back and looked at my note, for some strange reason, I was pulling it out for something. And I was like, he actually said I might have classical on here. And we talked a little bit about genetic testing. But of course, genetic testing in 2012 was nothing like it is now, over a decade later. But he gave me a book that was written by one of the experts on EDS. But it was a very, very thin book, because it wasn't like there was a lot to do, really.

Host: 

Mm-hmm. Right.

Linda Bluestein, MD:

And so he gave me that book and said, you know, I definitely think this is what you have. I would say that it was so validating, like having a label to put to what I was experiencing was a total game changer for me.

Host: 

Well, thank you, Dr. Jerry. Wow. That's really nice to hear. It's, I mean, you know, it's like every time you hear a slew of horrible medical stories, there's always, it's always nice to have a light at the end of the tunnel with one redeeming one that kind of changes direction for the better. So that's nice to hear. Let's take a second to explain connective tissue disorders, what the Beighton score is, what EDS is, what HSD is.

Linda Bluestein, MD:

Yeah?

Linda Bluestein, MD:

Yeah, yeah, definitely, definitely.

Host: 

It's gonna be new for a lot of people. I actually don't, I don't have a lot of familiarity with it myself. So kind of walk me through it. Did it connect to deep abdominal pain for you in that instance when you were an anesthesiologist? And just give us the rundown.

Linda Bluestein, MD:

Sure, so joint hypermobility means that a joint or a group of joints has greater than expected range of motion. So, you know, think of people that, you know, appear to be super flexible or bendy. So that's why my podcast is called Bendy Bodies. And some people who are hypermobile are perfectly fine and they're fine all throughout their life. They don't have an underlying connective tissue disorder. Their tissues are made sufficiently strong.

Host: 

Mm-hmm.

Linda Bluestein, MD:

And they just happen to have some joints that hyperextend or are really flexible. And I happen to have some friends that fit that category and they're in their 60s. If you meet somebody like that and they're in their 20s, you don't know what's gonna happen. It's really hard to, I think you shouldn't say that the person is going to have one trajectory or another, because we don't yet know the predictive factors. But if someone's in their 60s and they're doing well, they're, quite fit and they're doing well for their age and everything. They don't have chronic pain. They don't have the other, you know, subluxations, dislocations. We'll talk about the other symptoms that people get. Then they have hypermobility and that's it. Yeah, which is great, yeah. But.

Host: 

Good for them, yeah. I think everybody probably had a friend like this in grade school or high school that could take their hands and move them in these weird ways and elbows and stuff. So that's a marker of hypermobility there.

Linda Bluestein, MD:

Right.

Linda Bluestein, MD:

Yeah. Yeah.

Linda Bluestein, MD:

Right, right, if you could do party tricks, like I used to do tons of party tricks. my gosh, I would put my feet behind my head and then, like, walk on my knees. I would pop, I called it popping my hip in and out, but it probably was my IT band sliding over my hip. But I would, yeah, I would do all kinds of tricks. And I loved — I was in ballet and I loved to do all kinds of, know, I'd put my foot..

Host: 

Like what? What were the ones that you would pull off?

Linda Bluestein, MD:

..in my opposite hand, so I could put my right foot in my left hand and I could pull it behind my shoulder. That's how flexible I was. I could lay on the floor, but I could obviously do the splits in all directions. I could go past the splits at that time. Now I'm so stiff and I think that was because I didn't stretch at all for quite a long period of time and I think that was a big mistake actually.

Host: 

Wow.

Host: 

Yeah, okay, so party tricks aside, that's fun to talk about. And also I think it grounds it because I'm thinking of this friend I had in school, Justin, who would be able to put interlock his fingers behind his back and then he would be able without undoing his fingers, go all the way over his head and to the front. And you saw the shoulder kind of popping, as you said, of popping in and out and stuff.

Linda Bluestein, MD:

Mm-hmm.

Linda Bluestein, MD:

Yep, that's another one. Yep.

Host: 

They would end up kind of in a pretzel in front of him and he would undo them and stuff. So yeah, and he and he was into, you know, Cirque du Soleil. So his whole thing was like, I'm going to join the circus, was kind of funny. But that's the, that's the fun side. You know, when you're younger, what happens as you get older, if it's not just hypermobility, but there is a connective tissue issue.

Linda Bluestein, MD:

Right.

Linda Bluestein, MD:

Yeah.

Linda Bluestein, MD:

Right.

Linda Bluestein, MD:

Right, so within that category of people that have hypermobility, there's definitely a subset of people that have connective tissue disorders. And by the way, there's other genetic things that cause hypermobility. For example, Down syndrome. People with Down syndrome have hypermobile joints, they have more joint instability, et cetera. But there is also a group of conditions called hereditary disorders of connective tissue. And this includes Marfan syndrome, all the different types of Ehlers-Danlos syndrome, Loeys-Dietz syndrome, et cetera.

Host: 

Mm-hmm.

Linda Bluestein, MD:

And with those conditions, your extracellular matrix, the part that's not your cells, but the part that is between your cells, is not made properly. So it could be collagen, but it could be other things that are involved there. And so if you think about it, I mean, this is everywhere in your body. So that's why you can get these widespread symptoms.

Host: 

Okay, and walk me through some of these tests and the scores that people do. Like, what does the doctor actually ask you to do in office to check? Because a lot of people have never heard of them.

Linda Bluestein, MD:

Sure, so there are multiple different scoring systems for generalized joint hypermobility. So remember I said that joint hypermobility is when a joint or a group of joints has greater than expected range of motion. So if you just have a couple of joints, that's limited joint hypermobility. If you have hands and feet, that's called peripheral joint hypermobility. And if you have it in a bunch of different joints, then that's called generalized joint hypermobility.

Host: 

Okay.

Linda Bluestein, MD:

So there's a bunch of different scoring tools for generalized joint hypermobility. So one of those is called the Byton score. And the Byton score is not a great test. I don't love it because it's only a limited number of joints. But it's easy to learn. It's fast. It's been validated in many studies. And that's the one where you touch your thumb to your forearm, bend back your fifth finger. You look at your elbows. Do they hyperextend? Do your knees hyperextend? And can you put your palms flat on the floor? Those are the five maneuvers that you do.

Four of them are bilateral and one is not. So the total score that you could get is nine. And so you look at that and you assess like, okay, what number are they? And then it goes off of your age. If you're over 50, you just need to score four or more to be considered positive for generalized joint hypermobility. But I just saw people this past within the last couple of days, I saw somebody who had a score of one out of nine.

but she had a ton of other joints that were hypermobile. So I, exactly. So I diagnosed her with generalized joint, I I said, you have generalized joint hypermobility. actually isn't a, there's no ICD-10 code for that right now. But then I went on and did the rest of the criteria and she had the doughy skin, the stretchy skin, the piezogenic papules, like all these other findings. And so I diagnosed her with hypermobile EDS because she met all the criteria. Now her Beighton score was…

Host: 

that the test didn't cover, right?

Host: 

Mm-hmm.

Linda Bluestein, MD:

..lower than it's supposed to be, but she scored positively also on what's called the five point questionnaire. So this is another scoring tool that I really, really like a lot because it also takes these things into a historical perspective. So the first question is, can you now or could you ever touch your thumb to your forearm? Then the next question is, can you now or could you ever put your palms flat on the floor without bending your knees and with your legs straight? And then the next question is, as a child or teenager, did you dislocate your shoulder or knee cap on more than one occasion? Then, as a child or teenager, could you contort your body into strange shapes or could you do the splits? And then the last question, do you consider yourself double jointed? If you answer yes to two or more of those questions, it's very, very likely that you have generalized joint hypermobility.

Host: 

Very interesting. so which in and of itself isn't a bad thing, right? So how does… how do we know when what are the symptoms where there's an issue? And when do those start kind of manifesting in somebody? Is it different for everybody or do you start seeing at a certain age? And does it happen typically in the same joints or same symptoms or is there a kind of a broader spectrum here?

Linda Bluestein, MD:

Right.

Linda Bluestein, MD:

Mm-hmm. So it varies a lot, but I would say for you know people assigned female at birth menarche — when you start getting your menstrual periods — that's a time where you can have a lot of problems. So that's a really noteworthy time for a lot of people like they can be doing quite well until then but then they either Get that or they might get an infection they get like the flu or COVID or something and that because of the effects of that on the immune system, sometimes the joints actually post infection will also get more loose. So it's often a combination of either the hormones and or these infections that start to bring on the joint instability. So joint instability is when the joint has difficulty staying in proper alignment. like you're saying with your friend, he's basically dislocating his shoulders to do that trick. so a dislocation is when the

the joint is completely out of alignment. A subluxation is when it's at like a partial dislocation basically. So if you have joint subluxations and dislocations, that's definitely something that's suggestive of a connective tissue disorder. The tricky thing is we only know what our own bodies feel like. So we don't really know that we're subluxing our shoulders or dislocating our shoulders, because we can just do it, right?

Host: 

Well, I mean, it's fascinating to me. So I'll just bring it personal for a sec. So I've dislocated my right shoulder about 50 times. It's to the point where like there's very little bone left on the dang thing. And I had a couple of years where there was nothing, but then — this was on Father's Day — it dislocated again and it was really bad. And there was a lot of pain. Why is someone like, how is someone able to sublux or dislocate a joint without the inflammation and the pain that someone who doesn't have…

Linda Bluestein, MD:

Mmm.

Host: 

..all of this hypermobility. Why does that happen? Where's the pain? Where's all the marking factors that someone who doesn't have hypermobility, do they just not exist in people who have hypermobility?

Linda Bluestein, MD:

So that's a really interesting point. So somebody was here working in my office one time and he was looking at, like, all the stuff in my office and he says what do you do? He saw the, like, Bendy Bodies and stuff and I told him and he said, I've dislocated my shoulder a bunch of times. And so I asked him, well, how did it happen the first time that you did it? And his was traumatic. Was yours traumatic the first time? Yeah. So what happens is once you have dislocated a joint like that in a traumatic fashion, it is just…

Host: 

Right.

Absolutely, yes.

Linda Bluestein, MD:

..there's enough damage that it's prone to dislocate again in the future. That's different from a widespread condition where the tissues are just not made as strong as they should be. So if you have that much damage to a joint, then unfortunately, it's gonna just keep coming out. mean, that's exactly what he, what you just described is exactly what he described.

Host: 

Right.

Host: 

Right. So there's just something with the, with the flexibility where like when the bone dislocates or the joint dislocates and it just doesn't cause the inflammation, it doesn't cause the same pain that someone where it was a traumatic incident, it just, it's just the way the body was built in that person.

Linda Bluestein, MD:

Well, I mean, dislocations in people who are hypermobile, some of them are still excruciatingly painful, but others I think are probably not as painful. It depends on how, like if it literally just kind of fall…it can fall out and fall back in. But oftentimes the pain related to that is due to the muscle spasms because the muscle is reacting to what just happened.

Host: 

Okay.

Linda Bluestein, MD:

So yeah, it varies a lot depending on the individual person, but there's people who dislocate and sublux joints all day long. And then there's other people that have a diagnosis of hypermobile EDS and they don't do that as much. But the actual dislocations and subluxations are actually, they play a very minor role actually in the diagnostic criteria.

Host: 

Okay, was just a fun side question. So you're going to see, you know, when a girl starts menstruating around that time of adolescence, you'll see kind of complications, joints out of alignment. What kind of, know, I don't think like a 13 or 15 year old is going to come to their mom or dad and say, my joints are out of alignment. What do they typically describe it as?

Linda Bluestein, MD:

Yeah.

Linda Bluestein, MD:

Right. Right. So they typically would have fatigue and gastrointestinal complaints are really, really common. Abdominal pain after eating, bloating, constipation, diarrhea, difficulty swallowing, food intolerances, intolerance to things in the environment. If somebody's like, you know what, I'm allergic to, I'm quote, allergic to everything. And I say quote because it's..if it's a mast cell problem, like mast cell activation, it's not an IgE problem. Anyway, so people who are sensitive to everything in the environment like I was, like I mentioned, my allergies were horrible. I literally remember telling my mother that I wish I could die because they were so bad. And at that time, all we had was Benadryl, diphenhydramine. So I was sedated all the time. It was bad.

Host: 

Yeah. Connect the tissues for me here for a second. Connect the dots, not the tissues. Sorry, unintentional pun. But connect the dots. So you have joint issues, right? How does it connect to digestive issues? Where's the… and why is that so common?

Linda Bluestein, MD:

Right, so a couple ways. Number one, there is connective tissue in every part of your body and in the walls of your intestines. So the intestines can get more distended and constipation is a common problem because the stool just can accumulate in the colon and it's harder to get out. So there's a lot of things that can happen related to the integrity of the tissues inside the body. So that's part of it.

Host: 

Mm-hmm.

Linda Bluestein, MD:

The other part is the mast cells, M-A-S-T, mast cells, are part of the immune system. And we know that people with connective tissue disorders are much more likely to have mast cell disorders. And mast cell disorders do involve allergies, but they also involve these more idiopathic type conditions that are less well understood where the mast cells are just reacting to things that normally wouldn't cause a reaction.

So for example, something called dermatographism. So if you write on your skin, some people, it literally means skin writing. So some people can literally write on their skin and their mast cells react to that by forming like hives kind of.

Host: 

Mm-hmm.

Host: 

So they can give themselves a rash or a hive and write it out and it's like a temporary tattoo for a second.

Linda Bluestein, MD:

Exactly, it's like raised and it'll stay there for a number of minutes and So that gives you an indication that the mast cells are reacting to something that is not — you scratching yourself — is not something that you're allergic to right? It's a… it's a physical It's a it's a physical thing that you just did so there's something called cold induced urticaria So people get hives when they're exposed to cold so mast cells when they are hyperactive

Host: 

Right, right.

Linda Bluestein, MD:

They actually will cause problems in the connective tissues because they release things like proteases that degrade connective tissue. And so they can cause loosening of the connective tissue. And likewise, if the tissues aren't great, then that can cause problems with the mast cells. So we don't totally understand the exact mechanism of this, but we know that they are very, commonly overlapping mast cell disorders and the connective tissue disorders.

Host: 

Fascinating. Tell me how the research and kind of the available options for treatment and diagnostics has changed in the last 10 years for these issues.

Linda Bluestein, MD:

Yeah, that's a really great question. So I opened my clinic in 2017. And so if we go back a couple of years before that, I knew in 2012 that I had EDS. I'm going to call it hypermobile EDS because I feel confident that that's the right diagnosis. So I knew at that time, at that time I wasn't aware of any clinic at all that specialized in these conditions. Now fast forward 13 years later, and there's…

Host: 

Mm-hmm.

Linda Bluestein, MD:

..lots of clinics that have hypermobility or… somewhere in the name. But I will say that I've had people come see me and they've been seen at a practice that might have that in the name. But they come to me and I look at the note and I talk to them and they say, yeah, they did the Beighton score, but that's all they did. They didn't feel my skin, they didn't stretch my skin, they didn't look at my feet when I was standing up, they didn't do all these other things that you're supposed to do in order to establish either a diagnosis of hypermobile EDS or consider alternative diagnoses because obviously there's lots of look-alike conditions and it's really important to think about that because the treatment could be different for some of those other things.

Host: 

And is there genetic markers and genetic testing that's been developed as well?

Linda Bluestein, MD:

Yeah, so unfortunately the most common type of EDS, hypermobile type, we do not know the genetic marker yet. The lab at MUSC identified a possible marker in one of the Kallikrein genes, but we really, you know, we need a lot more data before we can say anything definitively about that. And there's no test available for that right now. That's not commercially available. That's just something that they found in their lab, and hopefully that's something that could be replicated in other studies in the future.

So we don't know the gene for hypermobile EDS yet, or I should say the genes, because I feel confident that it's going to be multiple genes. We do know the genes for all of the other subtypes, so that's good. So you can do genetic testing for the other subtypes, but all of those are either rare or ultra rare. Hypermobile EDS, though, is not rare.

Host: 

Mm-hmm.

Do you have, not to put you on the spot, do you have an idea of the size of the population affected by this in America or worldwide?

Linda Bluestein, MD:

It's millions of people. When I wrote an article with CNN, we were trying to, well, I didn't write it with CNN. CNN interviewed me for the article. And understandably, they want to get everything very, very precise, right? So there were a lot of emails back and forth and working on the wording. this was… one of the trickier things was figuring out, in terms of prevalence and things like that. And at that time, they were estimating 8 million people. But if you look at some research, some research suggests that..

Host: 

Okay.

Linda Bluestein, MD:

….it might even be as high as 3% of people that have symptomatic joint hypermobility and fall into the hypermobile EDS or HSD, hypermobility spectrum disorders category. And that could be over 20 million people. So it's huge.

Host: 

And it sounds like it's also grossly underdiagnosed as well.

Linda Bluestein, MD:

Correct. And and people suffer so much medical trauma with these conditions it's horrible.

Host: 

Okay, so..

Linda Bluestein, MD:

So they need advocates desperately.

Host:

Yeah…yeah, yeah… no kidding. So talk to me about what you do now once you, you you started your practice, had like a shift in 2017. Is that right?

Linda Bluestein, MD:

Yeah, so I had major bone grafting surgery on my wrist in January of 2016. And up until that time, I was still working in the operating room and I was doing locum tenens at that time. And I told the couple of places I was working, said, I'll be back in 12 weeks. I have to have the surgery, but you know, it'll be fine. It was not fine. I developed something called CRPS, complex regional pain syndrome, which I'm sure a lot of the advocates will also be familiar with because that's also something that people really, really suffer with.

Host: 

Yeah.

Linda Bluestein, MD:

And I wasn't able to go back to work. I had already had major surgery on my elbow and then I had this wrist surgery and I also had an unstable shoulder and this is my airway arm. So, you know, it was not safe to try to manage an airway, you know, with this extremity. So I had to figure out something else to do with my life and my youngest son was going to be going off to college and I thought, oh my gosh, if I'm just sitting around home, I'm going to be so depressed.

So I was still going to anesthesia conferences because I love, love, love to learn. And I was at an anesthesia conference and I was talking to somebody who was the editor for a pain management journal. And she said, would you write an article for us? And I said, sure, what about? And she said, well, you can pick the topic. So I was in a water Zumba class one day and I was like, duh, I should write it about pain and hypermobility. So I wrote this article in 2017. I wasn't working at this time other than I was teaching at a medical school part-time. And I wrote this article, and then people started to email me, where can I come see you? And I had to say, no place. And then I met my very, very dear friend and mentor, Dr. Pradeep Chopra, and he said, you need to open a clinic. And I was like, I can't do that. He said, yes, you can. And I will help you. So after going to a number of conferences and doing tons and tons of reading, I opened a clinic. And that was in November slash December of 2017.

Host: 

And what, and is it a hypermobility clinic? Is that your, obviously your specialty?

Linda Bluestein, MD:

So it's called Hypermobility MD. I have definitely seen people for chronic pain that have other things that are not related to hypermobility, but of course by far the majority of people in my medical practice have some kind of hypermobility related condition. And I should point out that historical joint hypermobility is like me. You were hypermobile in the past, but you're not anymore.

Host: 

Got it, got it. And then you also have a separate business where you do more coaching and how did that start? What made you decide to go into that field? What does it look like today?

Linda Bluestein, MD:

Right.

Linda Bluestein, MD:

Sure, so I started that in the summer of 2022 because after, you know, we had this kind of period of time during lockdown that we were able to see people from all over and not have to have the first appointment in person. The rules for telemedicine were so much more lax at that time. And I do think that it's really valuable to see someone in person, but from an access standpoint, it's huge to be able to.

have a session and be able to see somebody and have them become a patient without having to meet that requirement. So I was trying to figure out as the rules were changing with telemedicine and there were all these people that couldn't come to see me in person anymore, I was trying to figure out how can I help them without them having to come travel and see me and there's all these people and I didn't have any place else to send them. I didn't know what other resources to offer them. So I started this coaching practice through Bendy bodies — through that limited liability corporation Bendy Bodies — although I do all the sessions virtually. They're always with me completely one-on-one 100 % of the time and basically, they pick the amount of time that they want and if they pick like the the longest period of time and the most expensive session. I actually will talk to their doctor. And they also get included in that like a free 15 minute or included 15 minute follow-up that they can do a little bit later. I hear their story. I listen for clues for various different things. And then I'll give them lots and lots of resources. So I give them handouts that I've made that I think are most pertinent to them. I'll give them information about different medications that I've prescribed for patients. I can't prescribe it for them because they're not a patient, because I didn't see them in person. But I'll say people with..

Host: 

Right.

Linda Bluestein, MD:

..psoriatic arthritis often benefit from this, know, people who have...

Host: 

Right. You armed them with what to talk to their own local physician with.

Linda Bluestein, MD:

Exactly. And the nice thing is there's a lot of supplements, nutritional supplements that can help with stabilizing mast cells. So even if somebody doesn't really have a team that can help them with the prescription items, there's usually a lot of things that they can do on their own. A number of people who I've seen as a client do eventually become patients. They do eventually say, really, I know I really, really want to become a patient. I'm going to travel to Colorado or Wisconsin.

And usually when they come, say, so I'm doing better, but I still want to do better yet. So yeah, because it's really hard to find somebody, even some of these medications like cromolyn that are very, very safe. It can be really hard to find somebody to prescribe that.

Host: 

And why is that just lack of awareness in the market?

Linda Bluestein, MD:

I think it's lack of understanding and know, cromolyn is one I don't really understand to be honest. Low-dose naltrexone I get a little bit more because it's compounded. So if you're in a busy practice and you don't write for compounded medications, you know, I get that because you have to find, you have to figure out what kind of compounding pharmacy to send it to. They're probably going to tell you that you wrote the prescription wrong or you didn't provide enough information, whatever, at least the first few times. So compounded medications, I get it more so.

And I should explain: that’s when the pharmacy actually makes the medication. So they take the powder and they turn it into a tablet or a capsule or something because either they wanna change the excipients, the quote, inactive ingredients, or maybe you're giving a dose that is not commercially available. So I can understand, know, right.

Host: 

Right. That's the old, I mean, if you think of the logo of a pharmacist as a mortar pestle, like they actually used to make all the medicine before just being a pill dispensary of sorts. So there's, and it's becoming, especially with biologics, it's becoming much more common to see compound pharmacies out there. And so I think the public is becoming more aware of it. But yes, if you're…

Linda Bluestein, MD:

Yes. Right, right. Yeah.

Host: 

You know, they're not a dime-a…, it's like right aid doesn't do compounding and you know, Walgreens does, right? So you have to go to a specialized place and there's different regulations and then the FDA kind of gets involved. So it's, it is a much more painstaking process, but for the right patient, it can be a godsend.

Linda Bluestein, MD:

Yep. Yep.

Linda Bluestein, MD:

Yeah, yeah, exactly. But something like cromolyn that you can just send to a regular pharmacy. Now, it can be difficult to get because it's generic and it's a super old drug. I was actually prescribed cromolyn for my asthma when I was a teenager. It's a very, very old drug. But I think that's the other thing is...

Host: 

Mm-hmm.

Host: 

What was its initial intent… intended use? Okay.

Linda Bluestein, MD:

As a mast cell stabilizer. Yeah, it's always been used as a mast cell stabilizer and it's been around for a very, long time.

Host: 

Why did it go out of fashion?

Linda Bluestein, MD:

Other more expensive things come in and you do have reps that come around. It's changed. The rules have changed a lot with the relationship with the pharma companies. It used to be a lot more that they would come and they would bring you lunch and they'd be like, here, let me tell you about the latest and greatest. And I get it. I want pharma companies to be able to recoup their R&D because they spend a lot of money developing these drugs and we want new amazing drugs.

Host: 

Mm-hmm.

Host: 

Yeah, we want new drugs. Yeah, for sure.

Linda Bluestein, MD:

Yeah, we want new drugs. Yeah, we do. So it's challenging. But I think a lot of times people just don't remember the old hits, you know, and some of them do work.

Host: (34:43.5)

Yeah, for sure. For sure. I'm on ..I have gout. I'm on allopurinol. That's since the 70s. And it's working great. And it's like, don't you know, if it's not broke, don't fix it. Yeah, yeah, yeah, for sure. Okay, so that's an interesting kind of question. So when you're coaching people, and you're a lot of it sounds like a kind of medical education that you're giving them, you're giving them options.

Linda Bluestein, MD:

Yeah, yeah.

Right, right.

Host: 

What's the typical tenure? Like how long do they stay with you on average?

Linda Bluestein, MD:

So because I'm not writing them any prescriptions, I tell them, and it's all-a-cart, like I don't — right now anyway — I don't have any kind of monthly option or anything. So I just say, you just come back whenever you want to. And some people I'll see several times in the course of a year, other people, I'll see them once or twice. And then other times I'll see somebody who says, well, I was referred because of so-and-so that you saw a while back and they said to let you know they're doing great. That's the other hard thing is… 

Host: 

Okay.

Linda Bluestein, MD:

…when you have something that's not generally covered by, it's not covered by insurance. This coaching is not covered by insurance.

Host: 

Right.

Like all advocates we would talk about on this podcast, it's out of pocket for sure.

Linda Bluestein, MD:

Yeah, yeah, yeah, it's out of pocket. And even my medical practice is also out of pocket because I spend a long time with people. The most expensive package, it's three and a half hours for the initial appointment. And no insurance company is going to value that more than a few hundred dollars or something. So if you work for a traditional practice, they expect you to see 30, 40 people in a day.

Host: 

Mm-hmm.

Host: 

Wow.

Host: 

A 10 minute consult, yeah, exactly.

Linda Bluestein, MD:

And you obviously can't see that many EDS people. So oftentimes I'll hear through the grapevine that someone's doing a lot better. So it varies a lot. I've thought about doing a model where it would be some kind of every month or every other month or something like that. I've thought about trying to, because it would be nice to have more contact points and some follow up with people. Yeah.

Host: 

Right, right. But it's always that it's always that question of what's best for the patient. What's the, know, and balancing what's affordable or like relatively affordable. I hear you.

Linda Bluestein, MD:

Right.

Exactly. Yeah. Yeah. Most of these people are spending a lot of money. They're spending a lot of money out of pocket for supplements and, you know, devices and, you know, they might not be able to work full time or even part time. Some people can't even work part time. A lot of people are on disability, which we know is very limited if you're on disability income. yeah.

Host: 

Yeah, and if you can kind of wrap your head around that for those clients, I mean, the opportunity cost of not being able to work is like, just whatever it is, doc, just help me get back into the workforce and I'll pay it. So that makes a lot of sense. Okay, wonderful. It sounds like you're doing some really important work that we need a lot more of just because of how grossly uneducated…

Linda Bluestein, MD:

Yeah.

Yeah.

Host: 

..the public is about these. ..mean, you as a doctor and being dismissed by, was it a rheumatologist that you saw?

Linda Bluestein, MD:

Rheumatologist, I would say that rheumatologist, my physical medicine and rehabilitation doctor also majorly gaslit me and put her hand on my knee, very condescending, very patronizing. You know, if this MRI comes back unchanged, we'll have to accept that this is psychosomatic. And I was going through a very, very stressful time in my life. I was very emotional. I will admit that. I was very, very emotional. I thought I was going to lose my job. I was like, don't know if I can keep working. Am I going to lose my job? 

Linda Bluestein, MD: 

And there was that Tarlov cyst was on my imaging all this time. And a lot of people think that Tarlov cysts are incidental findings and they're asymptomatic, but they can cause symptoms. And that person didn't have an open mind and my orthopedic surgeon majorly gaslit me. I  had a lot of gas lighting actually. I definitely had my fair share of medical trauma..

Host: 

Everybody's emotional when they're in pain. That's such a stupid cop out.

Linda Bluestein, MD:

Fortunately, I have not had any for a very long time because I really don't.

Host: 

What is getting on the right medication and the right supplements look like? What are the benefits? Do they become pain free? Are there certain limitations? mean, what is in your own life and with your patients and with your clients, what do you see typically?

Linda Bluestein, MD:

I love this question. I don't think anyone's ever asked me this question in this way before. So in my own life, I went from taking a lot of medications and going to the doctor all the time to like, basically, hardly ever going to the doctor now. do take a number of supplements and I take a couple of medications and that's it. knock on wood, pain wise, I literally had a company send me a sample of something to try for my pain.

Host: 

Yeah.

Linda Bluestein, MD:

It's a topical and I was like, I have no pain, so I'm not sure where I'm gonna put this. 

Host: 

Wow, that's huge. Yeah, that's huge.

Linda Bluestein, MD:

Yeah, so I'm sure, it waxes and wanes. I'll have days where something does hurt for sure, but I don't have pain every day, which is amazing, amazing. I used to have migraines every day and back pain and leg pain and all kinds of pain. So that's me. I have patients who I work with for years.

Host: 

Mm-hmm. Fantastic.

Linda Bluestein, MD:

I'm thinking of one in particular that it took years, but she went from being in a wheelchair, and I actually interviewed her for my podcast.

Host: 

Send me the link and we'll put it in the chyron.

Linda Bluestein, MD:

Okay, her name is Lauren and she was my very first patient actually. Lovely, lovely young lady and she went from being in a wheelchair and needing assist devices and things like that and we worked together for years and she is actually now living in Kenya, super healthy, I don't think really taking much of anything. So…

Host: 

I mean just ambulatory, no wheelchair, nothing, just walking around like normal. Wow.

Linda Bluestein, MD:

Working full time, yeah, living in Kenya with her boyfriend, teaching at a religious school or doing some mission kind of work, amazing. That's an incredible success story. Another success story that I had was another young person who had hurt herself in a dance class and she participated in a documentary film that I am involved with and she was told,

Host: 

That's incredible.

Linda Bluestein, MD:

in this class, you're gonna have your splits by the end. So that's all they worked on for the whole class was their splits. And that was the beginning of terrible hip pain for her and all these problems. Anyway, when I started working with her and she came back for her 30 day follow up, she was like, I'm 90 % better. Now those are two of my absolute best stories. I have some, I have others that are really good like that, but you know, not everyone is like that. 

Host:  Some of them are more frustrating.

Linda Bluestein, MD:

Yeah, some are more frustrating. Some are more, you know, kind of, okay, let's try this, let's try this. I really, really like it when people do come back because I'm always coming up with new ideas, new things to try, and I get it. Resources are limited, so I understand that some people, you know, they kind of, you know, will drop off at some point, but it's really hard to know.

Host: 

You should consider having like an automated survey, like follow up that just for your own data, like what is working, where's the population at? It might be nice, especially if you have a large enough sample size, it could be kind of a good data to get that doesn't imply coming back for another cost for those people with squeamish. Yeah, I've struggled with that in my own practice too.

Linda Bluestein, MD:

Right, right, yeah. Yeah, it's hard, it's hard. And I mean, I've seen doctors, cash pay doctors myself that I've seen just once and it doesn't mean that it wasn't super valuable. So yeah, it is hard.

Host: 

Right, exactly. One, and the evidence is like you get referrals from some of those patients, right? And it's like, okay, well, something's going right, you know? Yeah. Okay. Well, if you want to work with Linda, hypermobilitymd.com, both as a patient, although she has a long waiting list on the patient side, from what I understand, but under services, there's also the coaching option. So if you want to start with her that way,

Linda Bluestein, MD:(42:51.6)

Right.

Right? Right. Right.

Host: 

And you could do that, I would take it from anywhere in the world, really.

Linda Bluestein, MD:

Yeah, I've talked to people all over the world. And the nice thing about that is, I mean, we do it just like you and I are talking right now. And because it's virtual, can find little pockets of time to do those sessions so much more easily. So that's much easier to get in. And plus, I don't have to worry about making sure that there's space for people for follow-up. So if I'm writing prescriptions for you and or I just need to see you to follow up on your labs or whatever, I need to make sure there's room for those patients to get in.

Host: 

Mm-hmm.

Linda Bluestein, MD:

But on the client side, that's not as much of a concern. So I can always find space to get people in. And oftentimes, it's a very short time frame sometimes. So if you just let me know, like I have some openings next week, or I can usually squeeze people in.

Host: (43:46.7)

Right.

Host: 

Sure.

Host: 

Yeah, and you can move certain things around if like you have a client there who's more flexible for sure. That's one of the huge benefits is accessibility is a lot easier. So I will put it in the show notes, but again, it's hypermobilitymd.com and then if you want to work with Linda, the services tab is where you'd want to kind of look. Linda Blustein, wish you all the best. I thank you so much for sharing your story and what this looks like and

Linda Bluestein, MD:

Thank you.

Host: 

And thanks for being with us.

Linda Bluestein, MD:

Yeah, thank you so much for having me. I do want to, I think I mentioned, well, I know I mentioned my podcast, Bendy Bodies. And can I mention that website? Okay. So that's bendybodiespodcast.com. And I do also have a newsletter and that's hypermobilitymd.substack.com. And so through there, I also offer lots of free information and love hearing from people because that really helps me know what

Host: 

Yeah, please, please do.

Host: 

Okay.

Linda Bluestein, MD:

kind of information is going to be most valuable because I am really trying to make this as accessible as possible.

Host: 

And on the Bendy Bodies podcast, you talk about hypermobility and all the different things that kind of come with it. Is that right?

Linda Bluestein, MD:

Yeah, and most episodes I interview another expert in some area that's related to hypermobility in some fashion. I've had gynecologists, because pelvic pain is very common, perineal pain, vulvar pain, super, super common. So I've had gynecologists, urologists, obviously bladder pain is very common. Gastroenterologists.

Host: 

Like what? Give me a couple examples of how they're related.

Host: 

Mm-hmm.

Linda Bluestein, MD:

Gastroenterologists. Lots of physical therapists and different physical therapists that have different focus. like pelvic floor physical therapists, ones that work more on like the nervous system, neural retraining kind of things. I'm really excited to have Dr. Adrian Lowe coming up in the near future. He's amazing in the like neuroplasticity space. That's gonna be a fantastic conversation. So I have over, I've recorded over 150 episodes at this point, so.

Host: 

Mm-hmm.

Host: 

So it's a nice library archive there that you can kind of weed through. And it's called the Bendy Bodies Podcast. Okay, Linda Blustein, thank you again.

Linda Bluestein, MD:

Yeah, over 150 hours worth. Yep.

Linda Bluestein, MD:

Thank you so much for having me.