Hello everyone and welcome back. I have been waiting to have this conversation with this particular person for a very long time. And I am super excited that she is on the show today. Welcome Dr. Linda Bluestein

Linda Bluestein, MD (00:15)

Thank you so much for having me. I’m really excited to chat with you today.

Ginger Garner PT, DPT (00:19)

Yeah, this has been a long time coming. There’s so much that we want to cover. So before I jump in, I just want to give you guys a little 40,000 foot view here with the bio. So listen along. Dr. Linda Bluestein is a leading expert on hypermobility disorders and the founder of Hypermobility MD, where she provides specialized care for individuals with conditions like Ehlers-Danlos syndrome.

She also leads Bendy Bodies, love that name, a global coaching platform supporting those with hypermobility. She hosts the podcast, Bendy Bodies with the hypermobility MD, sharing expert insights and resources for patients and providers. She’s a frequent speaker, a published author, and has contributed two chapters to Disjointed, a key text on hypermobility disorders.

Her advocacy work includes roles with international consortium on EDS and HSD, Standing Up to POTS, Bridge Dance Project, and EDS Guardians. She also co-developed the first online EDS CME course with Chronic Pain Partners and serves as a volunteer medical consultant. Welcome, Linda.

Linda Bluestein, MD (01:28)

Thanks so much.

Ginger Garner PT, DPT (01:30)

so I’m just curious because

I think that the medical community in general, like I’m coming from a public health perspective. And of course this season is all about endometriosis and we’ll get to how we’re going around our elbow to get to our thumb, like no pun intended in just a second. But I feel like in the general medical community, ⁓ hypermobility and hypermobility syndromes in the spectrum is kind of treated like a unicorn sometimes, you know?

we don’t know what to do with that, go to PT or we don’t know what to do with that or you really don’t have anything or maybe you’re bendy but okay, so what? What does it have to do with absolutely anything? So I am super curious at how you even, how did you fall into the specialty? And let me first say too, we really need more people like you in the field doing this kind of work, but what led you to specialize?

Linda Bluestein, MD (02:25)

I think the word fall into, or the words I should say, was a perfect description of that because it was not part of my grand plan. You know, I went through traditional medical training after my attempts to be a professional ballet dancer were thwarted by multiple injuries and things like that. So I ended up training to be an anesthesiologist and I worked in the operating room for more than 20 years.

Ginger Garner PT, DPT (02:27)

Yeah.

⁓

Linda Bluestein, MD (02:50)

And then my medical problems started to catch up with me again. So I needed to come up with a plan C. And my youngest son at that time was getting ready to go off to college. knowing myself, knowing the fact that I had dealt with a lot of anxiety, I dealt with some postpartum depression, I thought I am going to be a basket case if I don’t have some purpose in my life when my son goes off to college.

So I was still going to anesthesia conferences and I had gotten on the faculty of a medical school, but as an anesthesiologist, they don’t have a lot for me to teach. I would teach like, know, airway courses and, know, ⁓ ACLS, advanced ⁓ cardiopulmonary life support kind of classes, but there wasn’t a whole lot that I could teach. So I wrote a paper about pain management for hypermobility disorders. And I had so many people contacting me and asking me,

you know, where can I come see as a patient? And I had to tell them, I’m sorry that I don’t, you know, offer that. And along the way I met my wonderful mentor and colleague, Dr. Pradeep Chopra, who is also an anesthesiologist, but our careers were kind of flip flopped. I had spent most of my career in the operating room and he had spent his entire career doing pain medicine and an incredible, lovely man. And he said, you need to open a clinic. I hadn’t even met him in person yet. We were just talking on the phone.

Ginger Garner PT, DPT (04:03)

⁓

Linda Bluestein, MD (04:12)

And he said, you’re an anesthesiologist. You have this broad understanding of human physiology and pharmacology. And you can really help a lot of people. And I was like, no, no, no. I don’t think I could ever do that. And he said, I will help you. So I went to several conferences that he was speaking at. And we spent hours and hours talking. And he

Ginger Garner PT, DPT (04:27)

Mm, no.

Linda Bluestein, MD (04:36)

He really, really encouraged me and at one point along the way I was like, I’m not ready and it’s kind of like having a baby where he’s like, no, no, no, you’re ready, you’re ready. So I was like, okay, I guess I’m as ready as I’m ever gonna be. So my very, very first patient I actually interviewed for my own podcast and because she is doing phenomenally well now, I wish I could say that all of my patients are doing phenomenally well, but unfortunately, not everyone has the same.

Ginger Garner PT, DPT (04:42)

Yeah. Yeah.

Yeah.

Linda Bluestein, MD (05:04)

you know capacity for having that kind of results so fortunately though a lot of my patients have done really really well including her and ⁓ I studied her chart like you would not believe because I was so nervous you know knowing that she was my first patient and you know I for those first I don’t know however many patients that I had I did such in-depth study of their of their medical records because you know I had that to go on and the knowledge that I had accumulated

along the way going to conferences and reading tons of journal articles and things. it was a scary time, but also very exciting because I knew when I published that first article in 2017 and the new criteria came out in March of 2017, I knew in my head, I was like, this is gonna be huge. This is going to be really, really huge. This is gonna impact a lot of people. And at that time, I already believed that there were a lot of people

walking around with symptomatic joint hypermobility, with very few resources.

Ginger Garner PT, DPT (06:05)

Yeah, you’re definitely right about that. So for the listener who might suspect that they have hypermobility or know someone that does, or they already have a complicating issue like endometriosis and they know that they are or that they’ve been diagnosed ⁓ with something along those lines, can you define EDS and the whole hypermobility spectrum for the listener so that they can understand some green flags, yellow flags, and red flags for themselves?

Linda Bluestein, MD (06:34)

Absolutely. So we’ll start with joint hypermobility. you know, obviously in medicine we love our acronyms, right? So JHM or joint hypermobility means that a joint or a group of joints has greater than expected range of motion. So it could be peripheral joint hypermobility, which is limited to the hands and the feet. It could be localized joint hypermobility, which is just in a few joints or less. It could be generalized joint hypermobility, which is in the axial skeleton and in the periphery.

Ginger Garner PT, DPT (06:40)

Mm-hmm

Linda Bluestein, MD (07:02)

Or it could be historical joint hypermobility, meaning that you were hypermobile in the past and you’re not anymore. If a person has generalized joint hypermobility, then we know that they are more likely to have a connective tissue disorder. It doesn’t mean that for sure they do, but it is more likely than somebody who doesn’t have generalized joint hypermobility. And of the hereditary disorders of connective tissue, we have things like Marfan syndrome, Louis-Dietz syndrome, a whole host of conditions.

but the Ehlers-Danlos syndromes as a group are the most common hereditary disorder of connective tissue. And of those types of Ehlers-Danlos syndromes, all but one type we have the genetic marker or markers for, but we don’t have the genetic marker for the hypermobile type, which unfortunately is by far the most common type and accounts for 80 to 90 or more percent of cases. So it’s really, really tricky because that’s a clinical diagnosis.

meaning that we have like a check sheet that was developed by experts in 2017 who sat down and discussed what they thought should be on that checklist. you know, obviously there’s going to be differences of opinion and, you know, no process like that is perfect. And some of those criteria are incredibly subjective. Does the person have soft, velvety skin?

Ginger Garner PT, DPT (08:22)

Yeah.

Linda Bluestein, MD (08:22)

Compared to what? mean, it’s really,

that obviously varies by age and did they just put on lotion or, that’s a really, really subjective one. ⁓ And crowded upper palate, is it crowded ⁓ and narrow? Well, by what measurement or standard? So it’s really, really challenging. The hypermobile EDS diagnosis is very challenging because the criteria are so… ⁓

Ginger Garner PT, DPT (08:28)

Yeah.

Mm-hmm.

Mm-hmm.

Linda Bluestein, MD (08:50)

They’re very, very specific, but at the same time that they don’t, I think, accurately represent the fact that so many of those things that I just described are like on a spectrum. And where do you draw that line?

Ginger Garner PT, DPT (09:03)

Yeah, yeah, as with the struggle with many things. If we’re talking about autism spectrum, that’s a giant, I’m still, ⁓ it’s ⁓ dubious if they should have just put all that together, because you have kids who are non-functioning and then ones who are excelling, and I’m sure it’s very much the same here. So.

in terms of

how people present and pivotal experiences that you have had in that care and providing that care. ⁓ Were there moments for you along the way, like those pivotal moments like I mentioned, your patient experience that shifted your clinical lens towards connective tissue disorders? I know you mentioned having your own experience in ballet, right?

Linda Bluestein, MD (09:55)

Yes, so I did ballet for many, many years. I was not the most flexible person in the class by any means. If anyone’s listening to this who did ballet with me, they might be like, she wasn’t that crazy, Bendy. In fact, I remember when I first started learning about joint hypermobility, Ehlers-Danlos syndromes, et cetera, one dancer stood out to me from college and I was like, my gosh. I guess I could say her first name because her name was Julia and she was so, so incredibly hypermobile.

She also had a body that was what we call disorganized. Like she had difficulty stacking her joints and I’m sure her proprioception was not great. But yes, there’s definitely some really key things along the way. I remember when I was diagnosed with ⁓ a Tarlov cyst, which I did an episode with my own neurosurgeon on my podcast, Dr. Frank Feigenbaum, who I really attribute to my incredible 180 that I did with my own health, my health.

before my surgery and before I started understanding about these conditions and able to apply that knowledge to my own health because I have a diagnosis of hypermobile EDS. I was in a pretty bad state in terms of both my physical and my mental health. And now having had that surgery and also figuring out a whole number of other treatments that we can talk about later, I really was able to make such a dramatic change.

but it was when I was reading about Tarlov cysts that I came across connective tissue disorders. And I came across literally like a sentence that said people with Tarlov cysts are more likely to have connective tissue disorders. And I just kind of went, huh, that’s interesting. So I started Googling, you know, like everyone does, I started Googling. Now it would be chat GPT, but back then it was Google. Of course it’s still Google also, but anyway, so I started Googling connective tissue disorders and I came across hypermobile EDS.

Ginger Garner PT, DPT (11:23)

Mm-hmm.

Yeah.

Yeah.

Linda Bluestein, MD (11:46)

And like so many people listening right now, I’m reading this and I’m thinking, ⁓ my gosh, this literally explains my entire life from the severe asthma that I had as a baby and I would get rushed to the emergency room, not that infrequently, and my terrible, terrible eczema and allergies and chemical sensitivity and irritable bowel and migraine and all these injuries and going to the rheumatologist as a 13-year-old. ⁓ It just all suddenly made sense.

So that definitely was a pivotal moment for me when I came across that sentence and that started me down this path.

Ginger Garner PT, DPT (12:25)

Yeah, that cluster of symptoms, of course, when you say all that, that’s like my typical, that’s like every patient that walks in my door. So for me, it feels very, very common. Like that’s what I see all day long. But so many people can have clusters of those symptoms. And so if that sounds familiar, keep listening. So my next question is, what are some of the most common misconceptions? Because they’re out there, just like everything else that you hear on a regular basis about hypermode

Linda Bluestein, MD (12:33)

Right.

Yes.

Ginger Garner PT, DPT (12:55)

mobility disorders, like hypermobile EDS, for example.

Linda Bluestein, MD (12:59)

I would say the one I want to mention first because it’s the one that makes me most insane and I’m not, I know I’m being a little melodramatic here, but it really does make me insane. Don’t bother with the diagnosis because there are no treatments and there’s no cure. Well, that is ridiculous. That is absolutely ridiculous. A diagnosis is very validating. It gives you an understanding of why you’re suffering. When my rheumatologist diagnosed me in 2012 after this long odyssey,

Ginger Garner PT, DPT (13:07)

No, not at all. Yeah.

Hmm

Linda Bluestein, MD (13:29)

and telling my doctors there’s something wrong with me. I don’t know what it is, but there’s something wrong with me. And they kept gaslighting me and saying, no, no, no, you’re fine. But then I finally went to a rheumatologist in 2012 from the Marshfield Clinic. Is it okay to say his name? I have never shared his name before, but he actually just emailed me the other day. So I want to share his name, his name. Dr. Jerry Goldberg diagnosed me in 2012 and he said,

Ginger Garner PT, DPT (13:46)

Yeah. ⁓

Okay.

Linda Bluestein, MD (13:58)

you have hypermobile EDS, he examined a whole range of my joints, not just doing the Byton score. And it was so validating. And it was so reassuring that I was not crazy. I was not lazy. I wasn’t just falling apart on my own. And just the diagnosis alone made such a huge difference. And he gave me a very, very thin, very thin book that was written by Dr. Brad Tinkle, who was one of the leading experts at that time, who has sadly since passed away.

Ginger Garner PT, DPT (14:05)

Right.

Yeah. Yeah.

Linda Bluestein, MD (14:28)

He gave me this book and said, you know, here, read this. But he didn’t have a whole lot of other treatment options at that time. And of course, nobody did. ⁓ But thank God he gave me words to describe the suffering that I was going through. And that made all the difference in the world. And since then, I’ve really done so much reading and so much exploration and trying to figure out what can I do to help myself feel better.

And that’s why Dr. Chopra talked me into opening a clinic to help other people because it’s like, okay, if some of those things helped, maybe there’s other things that can help other people. And it’s a learning process, as you know, with these complex patients, you learn a lot from them. And hopefully they also learn something from me. And we just continue to work through things. And the one thing that I always make sure to do is I never give up on people. I’ve never told somebody,

that I don’t have anything else to offer you. I’ve literally never uttered that.

Ginger Garner PT, DPT (15:26)

I think that’s probably the most important thing of all because with this cluster of symptoms and the spectrum of condition of connective tissue disorders, I think that the norm that people do get is medical gaslighting, being dismissed, being invalidated, and the very thing that you just said, that was a nice big truth bomb right there of not.

Linda Bluestein, MD (15:44)

Yes.

Ginger Garner PT, DPT (15:55)

of learning how to then not take no for an answer and knowing that you have an issue that can be diagnosed, that can be helped, that there are things that you can do about it. ⁓ my gosh. I have about, yeah, exactly. You deserve to have relief from the persistent pain and the suffering that you’ve been in. I think that’s kind of the, describes the core of hypermobility and chronic pain. The experience of the person.

Linda Bluestein, MD (16:07)

and that you deserve that, that you deserve to have,

Yeah.

Ginger Garner PT, DPT (16:26)

And just for the listener, can you give a little, you know, brief overview, either in your own practice or if you know that epidemiology right off the top of your head, you probably do. Even though I didn’t ask beforehand, what are the stats on, you know, men to women? I know there’s naturally gonna be more women that, you know, have the condition, but what are the current numbers on that? What do you see?

Linda Bluestein, MD (16:50)

So I definitely have many more females in my practice than males. And I have a very, very high percentage of, I would say, late teens, early to mid-20s that are coming in with their mothers. And I think that it’s not surprising. ⁓ I’m a mother myself, and we will do things for our children that we don’t do for ourselves. And we can also, I think, often empathize more.

Ginger Garner PT, DPT (17:03)

Hmm.

won’t do. Yeah.

Linda Bluestein, MD (17:17)

So when our daughters are, I don’t have any daughters, but if I had a daughter and she was suffering, I would go to the ends of the earth. Whereas we often don’t wanna spend the money or prioritize our own physical and mental health. So that’s by far the most common age that I see. I’ve seen people as old as I would think mid 70s and as young as about 10. I’ve done consults like coaching online with parents of children that are

you know, six months old. But for patients, I normally, you know, start around age 10. And although these are hereditary disorders of connective tissue, so you would expect to see, and they’re not sex linked, so you would expect to see, you know, similar prevalence between the sexes. But we know that in most clinical practices, you’re going to see 70, 80, or maybe even more percentage that were assigned female at birth. And we believe that that’s probably hormonally based.

As you know, obviously endometriosis is definitely ⁓ something that can overlap with these conditions. And we know that hormones have a tremendous impact on mast cells, which are part of the immune system. And they also impact your symptoms in so many different ways. So while the numbers look quite similar until puberty, once people hit puberty, the numbers start to change quite dramatically. So if you were assigned male at birth, you start

Ginger Garner PT, DPT (18:23)

Yeah.

Mm-hmm.

Mm-hmm.

Linda Bluestein, MD (18:46)

developing and producing more testosterone, which we know is protective both from the standpoint of muscle mass, but also from the standpoint of inflammation. And if you are assigned female at birth, you’re going to start having cycling hormones, which we know can cause all kinds of interesting things to happen and definitely contribute to a higher prevalence of females in most clinical settings.

Ginger Garner PT, DPT (19:11)

Yeah, yeah. So, you you were talking about the range of patients ⁓ that you see and I would wholeheartedly underscore what you just said about teenage, young teenage girls coming in with their moms ⁓ and their moms ushering them in because they wanted them to get help. I have so many patients like that on my schedule right now. And of course, their moms have the exact same thing, but never got the help for it. So…

Linda Bluestein, MD (19:36)

Right. Right.

Ginger Garner PT, DPT (19:40)

When we go back to the earliest presentation, you mentioned 10, right? And the prevalence and how that may change, know, as puberty kicks in, that kind of thing. What are some of the earliest symptoms that someone might see at that age? You know, if you’re a listener, you’re a mom, you’re a parent, or, right, you care about someone and you think that this might be an issue, what might they see?

Linda Bluestein, MD (20:05)

So I’m glad that you pointed out that the parent might have similar symptoms because that’s definitely true. But we also know that the symptoms are often worse in the younger generations. So that’s also really important because I have seen parents in my office gaslight their own children. know, I managed to deal with this, so why can’t you suck it up? while they’re bringing them to me for help, I actually sadly have seen that happen. But we know that

Ginger Garner PT, DPT (20:24)

Oh. Oh. Yeah. Yeah.

Linda Bluestein, MD (20:33)

For some reason, we don’t necessarily understand why, but we have theories, of course, but we know that the younger generations do tend to be impacted more. And I can’t tell you how many times I see someone that could be in their 30s, 40s, younger, 20s, teens, but so often they say, I’ve had pain as long as I can remember, ⁓ like chronic daily pain, whether it be in joints, headache, abdominal pain.

Ginger Garner PT, DPT (20:39)

Mm-hmm.

Mm-hmm.

Mm-hmm.

Linda Bluestein, MD (21:02)

So many of these people have pain and if we can pay more attention to our children, if they have pain from a young age and try to help them sort that out, you know, the nervous system does get sensitized over time and we can have no see plastic pain where the nervous system isn’t processing pain signals correctly. And so we do want to address pain sooner rather than later. And even just believing your child could be very, very helpful.

So pain is definitely a very, very early sign, as is fatigue. So fatigue is definitely something that I did not appreciate until I started seeing patients, because fortunately it wasn’t something that was a huge part of my picture, but ⁓ patients really, really suffer from fatigue. It is a huge problem for a lot of people. And also gastrointestinal concerns. So it’s everything from the entire digestive tract, from the mouth all the way down to the anus. So you could have…

Ginger Garner PT, DPT (21:50)

Mm-hmm.

Linda Bluestein, MD (21:59)

difficulty swallowing, food intolerances, oral allergy syndrome, dysphasia where you feel like food is getting stuck. You could have heartburn, you could have SIBO, small intestinal bacterial overgrowth, ⁓ abdominal pain, ⁓ constipation, diarrhea, evacuatory disorders because the connective tissue is stretchy and the intestines are stretching and the pelvic floor might be dysfunctional so they have difficulty getting stool out.

Ginger Garner PT, DPT (22:07)

Mm-hmm.

Linda Bluestein, MD (22:27)

So gastrointestinal problems are very, very common. Food intolerances and things like that. And then we see like the allergic phenomena that are so common with mast cell problems. So it could be, know, allergies, asthma, eczema, irritable bowel, we believe is a mast cell problem. We know that migraine and other types of headache are also really, common in this population. And we see other joint problems like dislocations or subluxation.

Subluxation is a partial dislocation, we see that as well. ⁓ Tendinopathies, which is more of chronic tendon problem. ⁓ Sprains and strains, all of these are more common in this population.

Ginger Garner PT, DPT (23:09)

Yeah, and I think that a lot of people will, when you say, when someone says hypermobile, they just think of the, you know, the bait and scale, right? If they think of any scale at all, they’re just, you know, they’re thinking of, oh, well, that’s right. If you’re lucky, they’ll say that. But then let’s talk a little bit about that because we know that it’s just more, you just listed, right? All of the things that go far beyond a joint hypermobility. And yet in many circles in healthcare,

Linda Bluestein, MD (23:19)

Right. Yeah. Yeah. If you’re lucky.

Ginger Garner PT, DPT (23:37)

that’s the scale that’s being talked about as the defining, you know, ⁓ test and measure for EDS or hypermobility when so many other things can actually be hypermobile and maybe they don’t even have a positive Byton Scale at all.

Linda Bluestein, MD (23:40)

Mm-hmm.

Yeah, yeah, let’s talk about the Byton score. So the Byton score is like all validated tools, right? They all have their limitations. And the Byton score is biased towards the upper extremities. It only samples a small number of joints. it’s, know, touch the thumb to the forearm, the fifth finger, the elbows, knees, and touching the palms flat on the floor. So it’s a limited number of tests. So if your shoulders are hypermobile, you’re not going to be assessing that. If your ankles are hypermobile, which are two joints that are very, commonly hypermobile,

Ginger Garner PT, DPT (24:01)

Mm-hmm.

Totally.

Linda Bluestein, MD (24:21)

So, you know, it does not assess for those things. It doesn’t assess for cranial cervical instability or ⁓ instability and hypermobility in other parts of the body. So it’s just really, really important to look at as many joints as you can, assess ones that are painful or if the patient reports that they feel unstable.

Ginger Garner PT, DPT (24:29)

Huge, yeah.

Linda Bluestein, MD (24:45)

in those joints to assess those. And also it’s really important to consider the five point questionnaire that was developed by Dr. Sakim and Graham and published in 2003. And in that they ask the first two maneuvers, you know, can you now or could you ever? So this is a great tool for historical joint hypermobility, which is so important because as we age, we have surgeries, we get arthritis, we have injuries, our joint range of motion goes down, right? But if you have a hereditary disorder of connective tissue, it doesn’t go away.

Ginger Garner PT, DPT (25:02)

Mm-hmm.

Linda Bluestein, MD (25:15)

So that’s another reason why the Byton score is so problematic. So with the five point questionnaires, can you never, could you ever touch your thumb to your forearm? Can you never, could you ever put your palms flat on the floor? And then the last three questions are, as a child or teenager, did you dislocate your shoulder or knee cap on one occasion, on more than one occasion, excuse me. 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? And if you answer yes to two or more of those questions,

then it’s highly likely that you have generalized joint hypermobility. And another really important thing to remember is that both the five point questionnaire and the Byton score and the lower limb assessment score, the upper extremity assessment score, all of these other, the Tokyo laxity, there’s all these other tests, right, that we can use, but these are all tests for generalized joint hypermobility. They are not tests for EDS or the Ehlers-Danlos syndromes. They are a small part of that and

Ginger Garner PT, DPT (26:06)

Mm-hmm. Mm-hmm.

Linda Bluestein, MD (26:12)

joint hypermobility is one of the three core features of the Ehlers-Danlos syndrome. The other two being weak tissue. So it could be that you have multiple abdominal hernias or recurrent abdominal hernias. It could be that you’ve had pelvic floor prolapse and other signs of weak tissues. And then the other part of that is changes in the skin. So it’s stretchy skin.

that soft velvety skin, abnormal scarring in the skin. So those are the three core features. It’s not just, you have generalized joint hypermobility?

Ginger Garner PT, DPT (26:45)

Yeah. Do you also feel like, ⁓ because this is a constant question for me, treating ⁓ women with ⁓ EDS and generalized hypermobility and endometriosis, having MCAS problems and also POTS, it’s a hurricane of things coming together. You know, we know that the whole, the stretchy skin thing, you know, is an issue, but I also see repeatedly patients with visceral motility problems.

Linda Bluestein, MD (27:03)

Yes, yes.

Mmm.

Ginger Garner PT, DPT (27:13)

adhesions,

not scarring well internally. Do you see that as well?

Linda Bluestein, MD (27:17)

Mm-hmm

I’m glad you brought that up because when I was listing all of the GI things I mentioned SIBO small intestinal bacterial overgrowth But I didn’t mention why people get SIBO because of gastroparesis So yes, slow gastric emptying is definitely something that I see very very commonly ⁓ and yes the the you know abnormal scarring Internally and on the skin definitely

Ginger Garner PT, DPT (27:27)

Yeah. Yeah. Yeah.

Mm-hmm.

Yeah, that’s such a common problem. I use a lot of visceral mobilization and manipulation in practice because of slowed transit time that, yeah. So ⁓ thanks for clarifying that. ⁓ Let’s talk a little bit about hypermobility and pain for a second. In what ways, you mentioned central sensitization, so for our listener, it’s where the brain gets smudged, if you will, and our brains are really smart. ⁓ But.

Linda Bluestein, MD (27:46)

Mm. That’s great. Mm-hmm.

Ginger Garner PT, DPT (28:10)

they can’t always tell distinctly where the pain is and so it will smudge it and we’ll feel it in larger areas. So, you know, that’s what we mean when we say central sensitization, but how have you seen in your practice hypermobility impacting the nervous system and pain processing?

Linda Bluestein, MD (28:27)

So I remember when I’m gonna mention my mentor again, Dr. Chopra, when I was writing this article, I had emailed him and I asked him, what percentage of your patients have central sensitization? Would you estimate? And he wrote back, I guess it would be four characters, 100%. That was literally all he wrote. ⁓ And I definitely have observed that to be very, very true, a very high percentage.

I remember for me when I was really not doing well and in a lot of pain, everything hurt. And what I call it now is pain with all capitals. It was a very, very bad time for me. And at that time I had allodynia and hyperalgesia. So that’s where things that normally are not painful are painful and things that are normally a little bit painful are a lot painful. And I remember when I came across the words,

Alladinia and hyperalgesia. I was like, ⁓ there’s a word for this. ⁓ This makes sense. I understand now what’s happening to me and it made me feel a lot less guilty because you think that it’s your fault that so many things hurt. And there’s a saying in the pain world, pain begets pain. And it really is true. And at the same time that we have people with EDS have like these low levels of chronic pain or

Ginger Garner PT, DPT (29:36)

Yeah.

Linda Bluestein, MD (29:49)

high levels sometimes of chronic pain. We also get this sensitization of our nervous system where things that are normally not painful are also painful. So it makes the picture very confusing.

Ginger Garner PT, DPT (30:00)

And then if you do have that joint hypermobility, know, I have a patient come in and they’ve got a subluxing rib head, you know, or either in the front on the sternum or in their back or whatever. There’s so many other things that can be distinctly pinpoint. There’s the pain. And then you’ve got this overarching pain experience too that it’s like the system is flooded, you know, with so much information at one time that if you can imagine, you know, it’s…

Linda Bluestein, MD (30:08)

Mm-hmm.

Right.

Yes.

Ginger Garner PT, DPT (30:29)

how can someone go to work and concentrate, right?

Linda Bluestein, MD (30:31)

Right, right. I was

walking through the airport one time and I had had an exacerbation of one of my symptoms and I had a aha moment. was like, I was quite sure that I knew what had caused it. And I realized that people who have, you know, this, you know, tremendous symptom burden, you can’t possibly correlate cause and effect because your sensations are just

you know, if you have like 40 symptoms, which, you know, people definitely have 40 symptoms or more, how can you possibly figure out this food is contributing or this activity or, you know, not doing something is making things worse? You just can’t because your brain is trying to make sense of all of that. And it’s just overwhelming.

Ginger Garner PT, DPT (31:19)

Yeah, it is. I mean, that would be, that’s definitely your job. And anyone else who deals with EDS and all of the patients that I see on a regular basis with EDS, it’s then our job to say, and there’s hope for that, because that’s our job is to tease it out, to tease it through. And one of the ways that we do that too is starting to look at, and I don’t think we fully appreciate why, just like the…

the emerging research on the gut microbiome and endometriosis and what lesions are doing to the gut microbiome. We don’t even know yet. Let’s talk a little bit about hypermobility and endometriosis. I we’re seeing more research, more clinical observation linking EDS and hypermobility with endo. How do we explain this overlap? Like I see it, I see endo and migraines, endo and POTS.

Endo and MCAS, Endo, EDS, MCAS and POTS, like all the things, right?

Linda Bluestein, MD (32:19)

Right, right. So I was asked to give a talk back in 2022 on pain and MCAS. And I contacted the organizer, because it was a fairly small group that I belonged to. And I said, I don’t think I’m the right person to give this talk. And he said, you are the right person to give this talk. And I was like, OK, so I did. I did. I gaslighted myself. And I.

Ginger Garner PT, DPT (32:38)

Did you just gaslight yourself?

Linda Bluestein, MD (32:47)

thought, okay, if I’m gonna do this, I better do a good job. So I started reading so many papers on mast cell activation and pain conditions. And I came across mast cell activation being implicated in migraine, irritable bowel, endometriosis, CRPS, like so many different painful conditions that I was not aware of, interstitial cystitis, or chronic bladder pain. Yeah, exactly.

Ginger Garner PT, DPT (33:13)

mind-blowing.

Linda Bluestein, MD (33:17)

It was mind blowing to me. then reading about the mediators of the mast cell, which again is a part of the immune system, but these cells reside in tissues in very close proximity to nerve endings. And so when they release their mediators, that sensitizes the nerves to ⁓ pain. And then the nerves actually release chemicals that make the mast cell release more of their mediators and it turns into this vicious cycle.

So the mast cells are implicated in endometriosis and I believe that that is most likely the connection there because we know that people with EDS or HSD have a much, much higher prevalence of mast cell activation. I saw a statistic once that was like something like 35-fold increased risk of having mast cell activation.

Ginger Garner PT, DPT (33:51)

connecting point.

Yeah, it’s good. It’s good to know it, right? But then if you’re the person with it, or you’re sitting there talking to your patient about the possibility of MCAS being an issue and related to their pain and their migraines and such, it’s also like, ⁓ it’s another thing. It’s a big thing to have to then go and manage how do you handle that? We’ll circle back a little bit more into the endoconnection in just a second, but how do you start to handle like what

Linda Bluestein, MD (34:14)

Mm-hmm.

Ginger Garner PT, DPT (34:38)

What labs and tests are you looking at and what are the first few steps that you take with patients to try and help them get their head around the lifestyle changes that are gonna be required to handle this?

Linda Bluestein, MD (34:48)

Mm-hmm. So before I gave that talk in 2022, so I had opened my clinic in 2017, and I did appreciate that mast cell activation syndrome was important, and I was looking for it, but I think I was thinking of it as a more binary thing, like you either have it or you don’t, rather than thinking of it as a spectrum. I think it should be renamed mast cell activation spectrum. ⁓ And yeah, yeah, we could keep the acronym the same, of course, and just use the word spectrum.

Ginger Garner PT, DPT (35:12)

⁓ I like that.

Yeah.

Linda Bluestein, MD (35:18)

⁓ But it really dawned on me after this 2022 presentation that most of my patients were somewhere on that spectrum and that by treating and addressing the mast cell that perhaps I could get some better outcomes. And I definitely think that that shift in my thinking and in my treatment approach really made a substantial difference. Prior to that, I remember my second patient.

The mom came up to me after a talk that I had given and she was describing her daughter and she said, you know, she was diagnosed with non-epileptic seizure disorder, psychogenic, psychogenic non-epileptic form seizure disorder. And ⁓ started describing what was happening to her daughter. And she said, do you think that you can help her? And I said, I don’t know, but I’m happy to try. And the daughter already had a diagnosis of EDS and POTS. And I thought, well, this could be a mast cell problem.

Ginger Garner PT, DPT (36:10)

Hmm.

Linda Bluestein, MD (36:13)

And this was in 2017, you when I had first opened my clinic. So I gave her the treatments that I thought would be most effective for mast cell activation syndrome. She came back 30 days later and she said, I have not had a single episode. And I just about fell out of my chair. I was like, it actually worked, you know, because I didn’t know. Yeah.

Ginger Garner PT, DPT (36:16)

Mm-hmm.

Yeah. ⁓

We weren’t, yeah, you weren’t sure.

Yeah, I gotta say, I feel a paper coming on, mass cell activation spectrum. Yeah, yeah, yeah, definitely. I think that’s a really important distinction. ⁓ Because I think that you’re exactly right. People think the switch is either on or off, and nothing in life is really that clear.

Linda Bluestein, MD (36:42)

So yeah, yeah, I should publish that paper. Yeah.

Ginger Garner PT, DPT (37:01)

usually anyway and and that would totally make sense.

Linda Bluestein, MD (37:05)

Yeah, and we humans, we draw the line someplace. It’s not like the higher being has figured that out for us. We look for patterns, of course. In medicine, we look for patterns, and we make these arbitrary distinctions. We say, at this cutoff, you have this problem, and below this cutoff, you don’t. And I don’t think that’s how most things work.

Ginger Garner PT, DPT (37:17)

Mm-hmm.

Mm-hmm.

Yeah, and I think that’s the weaknesses of so many, you when we’re talking about labs and how to screen for things. And if I had a dollar for every time a patient came in and said, well, they said my labs were normal. Full stop. ⁓ Yeah. So what are some of the things that you look at and how do you prepare them to make those long range changes in their lifestyles?

Linda Bluestein, MD (37:45)

Mm hmm. Right, right. Yeah, yeah, yeah, yeah.

So that second patient of mine, did actually publish as a, well, publish, yeah, I guess it was probably published in their journal as a ⁓ poster presentation for the international, I think it was international, yeah, integrative medicine conference that was right before COVID started. it was, when I was preparing that paper, I was like, I need to come up with something to describe this method that I use to treat these conditions.

And I started writing down like, okay, what are the different things that I do and how could I describe this? And I came up with the acronym. Well, okay, wait, I’m sorry, I have to back up. My husband is the one who came up with the acronym. I have to give him credit. Yes, exactly. It’s my husband who came up with the acronym. He said, what about men’s PMMS? And I was like, okay, yeah, that works. ⁓ So that stands for movement, education, nutrition, sleep.

Ginger Garner PT, DPT (38:38)

okay. Credit where credit’s due, right?

Linda Bluestein, MD (38:54)

psychosocial modalities, medications, and supplements. And you’ll notice that there’s three M’s and the order of the M’s is very intentional. Movement first, medications last. Because most people already tried lots of medications and you can throw all the medications you want at somebody, but if you don’t address dysfunctional movement patterns and their fear of movement, like I had terrible kinesiophobia. When I first read about kinesiophobia, I was like,

Ginger Garner PT, DPT (38:58)

Mm-hmm.

Yeah.

Yeah.

Yeah.

Linda Bluestein, MD (39:22)

That’s what’s happened to me. I’m so afraid to move because I get injured doing simple things. There’s also two S’s and the sleep comes before supplements because sleep is crucially important for pain signaling and pain processing. So that’s the acronym that I use and I’ve published that in a paper that is, I can give you the link to that so you can share it with your listeners. Yeah.

Ginger Garner PT, DPT (39:25)

Mm-hmm.

Totally.

That would be great. Yeah,

we will include that in the show notes so you won’t have to go searching for it. It’ll just be down below in the show notes so you can just click on it. That’s super helpful. It’s basically ⁓ at its heart. It’s how we should be treating every condition that’s out there is through lifestyle, concrete lifestyle medicine, but it gets very, very specific and nuanced and incredibly detailed and appropriately tedious when we’re talking about.

Linda Bluestein, MD (39:58)

Right.

Ginger Garner PT, DPT (40:10)

EDS and connective tissue disorders. this whole, if we come back around to endometriosis for a second, and we’ve talked a little bit about connective tissue fragility, ⁓ maybe it does contribute. Of course, I’ve anecdotally seen that for a long time in practice, and I believe you said you had too It contributing to increased likelihood of adhesions or worse adhesions or other surgical complications in endometriosis patients.

How have you seen that come up in the overlapping endo and hypermobility population?

Linda Bluestein, MD (40:49)

Yeah, that’s really, really interesting. I have a lot of patients that have endometriosis and I don’t do endometriosis surgery. I would love to have people, you know, when they are doing those surgeries, when they’re doing the diagnostic laparoscopy, like actually trying to assess their connective tissue. My husband, who I mentioned earlier, he’s a urologist and he was a prostate cancer specialist and he did a lot of robotic prostate cancer surgery and, you know, lots of other surgeries.

And sometimes he would come home just exhausted and he would say, that person’s tissues were just absolute crap. Yeah, yeah. And they just fell apart. Every time I tried to put a suture in, they would just fall apart. And of course, you sometimes it was because the person was a smoker or, you they were older, they were generally more frail or something. Maybe their nutrition wasn’t as good. ⁓ But I thought that was such an interesting observation as I started to get into this more.

Ginger Garner PT, DPT (41:25)

wow, yeah, yeah.

Yeah.

Linda Bluestein, MD (41:46)

And I

thought if only there was a way when people had surgery that we could say, you know, ⁓ make some observations, try to quantify at a scale of zero to 10, like what you think their connective tissue strength is. And if it’s a repeat surgery and they have adhesions, you know, figure out some scale to comment on that also, I think would be really helpful.

Ginger Garner PT, DPT (42:07)

Yeah, it really would because right now there’s no way for me to even document like if I’m seeing a patient and doing all the aspects of orthopedic and pelvic PT, how are we going to document what we see the tissues doing if there’s a gastric motility and a slow transient time and for those listening that just means that’s just fancy words for just, your digestion’s a little off. Maybe it’s slow, maybe things aren’t moving as well and then I’m teaching them these techniques to do that and they…

not that they become reliant on it, but they have to do that in order for things to move well. But at the same time, if I’m doing diagnostic, like if I’m using ultrasound imaging, they also have prolapse, right? Where the anorectal canal is super bendy. And then I have to teach them how to splint so they can get the poop out because, yeah, so there’s two things happening. It’s almost like the superficial tissue and the fascia and everything kind of freezes, but then those deeper organs which we need to move appropriately,

Linda Bluestein, MD (42:51)

Right.

Right. Yeah.

Ginger Garner PT, DPT (43:06)

are a little bit too bendy and then they have pelvic floor dysfunction and then nothing’s coming out, you no joy anywhere.

Linda Bluestein, MD (43:11)

Yeah, yeah, yeah, yeah.

And I think this is a perfect example of why I’m so passionate about what I’m doing. Because the people who suffer from these conditions, they are heroes. They really are. They are dealing with things that, quote unquote, normal people ⁓ would just go crazy over. But instead, they are managing these complex symptoms, which often are at, you know,

cross rules with each other. So the treatment for one is going to exacerbate the other or, you know, trying to find a path through is very, very challenging. And so the gaslighting that happens is just so, so horrible, because it is unbelievable what I have seen people cope with on a day to day basis. I mean, right now in my head, I have so many different patients that are coming to mind. And I just am in awe of what they have.

Ginger Garner PT, DPT (43:42)

Yeah.

Linda Bluestein, MD (44:10)

been dealing with. It’s just incredible. I mean, the pain and suffering, but yet they continue to put one foot in front of the other somehow, you know? And I just think it’s amazing that they are able to do that. And I often will tell people, you’re stronger than you think you are, because they have been through so much and they don’t always recognize that, you know, I’ve survived all of those days.

Ginger Garner PT, DPT (44:29)

Yeah.

Right, well when you think about statistically speaking, if you’re listening now and you have endometriosis, you likely were gaslit for at least a decade, seven to 10 years before someone believed your pain. Now you put another relatively obscure diagnosis because it’s mostly saddling women and impacting women, just like endometriosis, under-researched, under-attended, you know, common victim of gaslighting.

Linda Bluestein, MD (44:49)

Right.

Ginger Garner PT, DPT (45:04)

And then you begin to quantify the number of years in which a patient has had to not only suffer needlessly, but then in the very place where they should be able to get safe space and safe sanctuary, they go and then they get gas lit on top of that. ⁓ That’s like some special mental health therapy that all of those people need to go through, not because they’re weak, but because that’s how bad the system has been historically in handling and taking care of them. They really haven’t.

developed a system yet and I think we still don’t have a good system for that because there’s not enough endosurgeons, there’s not enough endopTs, there’s not enough hypermobility, ⁓ know, MDs and PTs as well. just there’s a lot. So yes, yes, everyone listening that has hypermobility, you’re like a unique human being that’s like a superhero. So, and you shouldn’t have to be, but yeah.

Linda Bluestein, MD (45:49)

yeah.

Yeah, the medical, yeah, no, you should not have to be, and the medical trauma

is definitely still happening. I mean, I literally hear this every single day. ⁓ And it’s awful. I mean, and a huge part of this is our healthcare system, which is horribly broken. it is, you know, putting our clinicians and our patients, basically like pitting them against each other, when really they are part of the same team. I mean, I truly believe

Ginger Garner PT, DPT (46:01)

Mm-hmm. Yeah.

Linda Bluestein, MD (46:23)

that clinicians want what’s best for patients. But so often they’re working for a system that is saying, have to see 40 people in a day. And if you’re seeing 40 people in a day, how can you possibly take the time to really listen and really try to understand and validate someone’s concerns and try to solve what is probably a fairly complex puzzle? So I really think that that’s a huge part of the problem.

Ginger Garner PT, DPT (46:35)

Yeah.

Yeah, I think it’s one of the more complex issues. And if we think about ⁓ what a woman needs across the spectrum of their life, think about then what happens to some woman who is struggling with fertility issues or did manage to get pregnant, now is pregnant and has hypermobility. Like that’s a whole other thing. And then how about the perimenopausal women and the menopausal women and you’re like. ⁓

Linda Bluestein, MD (47:06)

Right.

Yeah. yes. ⁓ yeah.

Ginger Garner PT, DPT (47:13)

Let me hold my head here because there’s so much unique one-on-one, like the N of one, the individual really does matter because we can’t just, and I’m sure this is so true in your work that you can’t just throw a protocol of one person. She may be perimenopausal or menopausal or prenatal or postpartum or just, ⁓ yeah, there’s so much to consider, which is what makes it complex, which is why ⁓ individualized care is so important.

So if we drill down a little bit more into endometriosis, have you noticed a difference in symptom presentation or treatment in patients who have both hypermobility and endo?

Linda Bluestein, MD (47:58)

So I mean, the number of patients that I have that have pelvic pain is quite, quite common. And it’s really sad, but I’ve had patients say, I suspect that I have endometriosis, but I don’t qualify for a diagnostic laparoscopy for some reason, which is the definitive test. Maybe they’ve had a CT scan of their pelvis, but really what they need is a diagnostic laparoscopy. And I’ve had patients tell me that

They can’t qualify their insurance won’t cover it or whatever the case may be. So it’s definitely something that I see quite commonly when I do see it or if I suspect it, I really try to focus on that mast cell directed approach to ⁓ mitigating the person’s symptoms. And oftentimes we do see an improvement in the person’s symptoms. And what I love about the mast cell directed approach is it’s the opposite of whack-a-mole. You know, if you’re…

if you just are directing therapy at, know, I mean, there’s some things that are really helpful, right? Like you can do cold laser on adhesive capsulitis of the shoulder, and that could be potentially very, very helpful, but that’s just, you know, dealing with one focal thing. But if you can address the mast cell, which is present everywhere in the body, and so if you can address that, and if you can treat the mast cell activation and improve their pelvic pain, their endometriosis pain,

and their irritable bowel pain and their migraines and their joint pain, well now you’ve got a huge win.

Ginger Garner PT, DPT (49:31)

Yeah, is such a… When I talk to patients with endo and when we look at the theories that are posited about the drivers of endometriosis, we have inflammation, chronic inflammation as one, endometriosis lesions creating their own estrogen and then doing at will what the body likes to do with estrogen, which is sometimes not a great thing. And then if there’s constipation or other pelvic floor dysfunction on top of it,

then that estrogen is recirculated back in the body and then you get worse menopausal symptoms, for example, hot flashes, night sweats, joint pain, headaches and all the things. So yeah, that root cause, looking at the root cause problem is huge. Even though, no, can’t ⁓ conservatively treat our way out of endometriosis, the only definitive treatment is excising.

is skilled excision of those lesions. And unfortunately, you hit on a very true point. Oftentimes, insurance companies will not pay for it, which is insane in itself. Or they will pay for substandard treatment and say that you can just ablate them and do ablation and it will be fine. But we know that does not work, that makes it worse. that, think, going back to root cause is something that for everyone listening,

If you do have endometriosis, if you do have hypermobility on top of it, there are still things that you can do while you are finding the right care, the right surgeon who can do that excision for you. And if you haven’t listened to any other of the podcasts, go back and do that because we do put in the show notes the place where you can go and get that list of vetted surgeons and practitioners who can help you with that, is huge. So.

Linda Bluestein, MD (51:24)

Yeah, and I have some patients that have had endometriosis excision surgery and have had just a dramatic improvement in their symptoms. Not everybody, but of course the type of surgery I’m sure varies a lot. The episode of my podcast that’s coming out in the very near future is about breast implant illness. And for that, if you are removing the breast implants and you don’t do an end block ⁓ excision of the capsule and the breast implant, you’re not going to get as good an outcome.

Ginger Garner PT, DPT (51:31)

Yeah.

yeah.

Mmm.

Linda Bluestein, MD (51:54)

And so I’m sure with endometriosis surgery, techniques are very, important. And so the results are gonna be very different depending on the surgeon. But I do have some patients that have just really noticed a remarkable improvement in their symptoms after surgery.

Ginger Garner PT, DPT (51:59)

That’s everything, yeah.

Yeah, we usually will tell patients to go to Nancy’s Nook first and look at that list of vetted surgeons. And that is just a bare bones starting point from where to jump in terms of finding the right surgeon. ⁓ But then after that, yeah, you’re right, it does come down to location. Where was it? Was it on the bowel? Was it on the diaphragm? Was ⁓ it appendix endo? Like it can be absolutely.

Linda Bluestein, MD (52:33)

Right.

Ginger Garner PT, DPT (52:38)

anywhere and pervasive, ⁓ which then leads me back to talk about more of the root cause stuff. In the meantime, you can treat the issue with MCAS, you can treat systemic inflammation, you can treat estrogen dominant symptoms and things like that. And also, there’s nutrition and the lifestyle medicine you’re mentioning. So there’s always, always, always the movement, the sleep and all of those things. But nutrition has such a unique

Linda Bluestein, MD (52:58)

Yeah.

Ginger Garner PT, DPT (53:08)

and powerful ⁓ potential to shift because a single meal can shift how you feel, right? You eat one meal, you can feel great or, my gosh, I gotta go take to the bed. This is terrible, right? Especially when someone has EDS. So, let’s talk a little bit about nutrition and hypermobility. What impact does what we eat have on hypermobility and EDS?

Linda Bluestein, MD (53:21)

Yeah. Yeah.

Yeah, nutrition is so, so important. And it’s challenging because some of the foods that we’re taught are quote anti-inflammatory are also high in histamine. So those are foods like spinach or avocado. these are foods that like avocado has fabulous healthy fats. ⁓ But it’s also important to know that just because you have mass cell activation doesn’t mean that you need to avoid all foods that are high in histamine.

Ginger Garner PT, DPT (53:47)

true.

Linda Bluestein, MD (54:02)

You need to pay attention to your symptoms and how you respond to different foods. Because the other problem is, as I’m sure you know, you start eliminating these things and these things and these things. The next thing you know, you have some kind of nutrient deficiency ⁓ and or you’ve developed an eating disorder. And so often I find I’m very passionate about helping dancers with hypermobility, as you may know. And I’ve gone into a lot of studios and I’ve given talks and afterwards.

some of the dancers will come up to me and start telling me about their abdominal symptoms that they’ve had. And they’ve been to a GI doctor and the GI doctor says, well, you just have an eating disorder because, you know, they’re a dancer and they, you know, oftentimes they’re very thin, which by the way, thin and eating disorder are not the same thing, of course, but ⁓ they get mislabeled as having an eating disorder because they have restricted some of their foods because they’ve figured it out that these are ones that make them feel less good.

Ginger Garner PT, DPT (54:44)

Mm-hmm.

Yeah.

Linda Bluestein, MD (54:55)

But

it’s very important to make that distinction between an eating disorder or disordered eating and making this correlation between different foods and how you feel. So it’s a very delicate balance. In general, we want to think of an abundance mindset and not a restrictive mindset because if we start eliminating, eliminating, eliminating, now we start to have problems. But at the same time, we want to think about some general principles. So for example, processed sugar.

⁓ There’s no benefit to that. There are just a few absolutes ⁓ and one of them is sugar. Sugar causes inflammation, increases inflammation in the body. Now, sugar and fruit is very different from adding four teaspoons of sugar into your coffee. So we want to have a balance. If you have four teaspoons of sugar in your coffee once a month, that’s very different than if you do it every day.

So it’s what you do all the time that matters a lot more than what you do once in a while. So, you know, I try to eat healthy most of the time, but I love sweets. And so I will have, you know, dessert or whatever it might be, but I also try to be choosy about it, you know, and make sure that it’s worth it. You know, is this something that’s really delicious or is it just kind of, you know, meh? So eating foods that are…

Ginger Garner PT, DPT (56:10)

Yeah.

Yeah.

Linda Bluestein, MD (56:20)

good for us and that have good nutrients are basically where we want to start from. We want to make sure we’re getting healthy fats. We have the fats, carbohydrates, and protein. And now I feel like there’s this big push for protein, which protein is very important. Don’t get me wrong. But we also need to make sure that we’re consuming healthy fats. And our bodies do need carbohydrates as fuel. So some people ⁓ find that the keto diet does help their pain.

It’s usually not sustainable and it’s especially not sustainable for athletes. But ⁓ oftentimes I will refer people to dietitians because this is such a delicate ⁓ space to be in. And while there’s some general information that I can give people, I also know that I’m not an expert in nutrition. So I want to make sure that they get really good quality advice.

Ginger Garner PT, DPT (56:48)

Mm-hmm. Yeah.

Yeah.

I think that’s a really good point to make too because no one individual in the healthcare space is going to have every answer because, that would take a long time. I’ve only met one person in my life who was MD, PT, RD, MBA. there was two other, like she might’ve even had a JD too. Like, okay. All right, so maybe that person.

Linda Bluestein, MD (57:19)

Right.

Wow.

my gosh. Are they like a hundred years

old?

Ginger Garner PT, DPT (57:39)

Right, exactly. Are they

a vampire? Like, you know, it’s like, what’s going on? That she had, it’s just, she’s just an amazing human being, but okay, barring that, which, you know, most people don’t have the time or the finances to go get seven different professional degrees, professional clinical medical degrees, it’s a team. You know, it’s a multidisciplinary team. Yeah.

Linda Bluestein, MD (57:43)

That’s crazy.

Great.

Right, totally. And even with her, right? She can’t possibly,

she’s not a surgeon. you know, that’s one thing that that doctor.

Ginger Garner PT, DPT (58:05)

Right, you would need

like a four hour appointment to cover all of the things. At least, at least, to cover all of those things. And so it’s important to remember that you’re gonna be building this team that’s gonna carry you across the lifespan and you can work very efficiently that way as well. So super important. Have you found any particular…

Linda Bluestein, MD (58:09)

All of it, right, right, right. Yeah, yeah.

Ginger Garner PT, DPT (58:33)

And I know this is a question that’s always laid in with problems because people ask me the same thing. ⁓ just tell me what movements to do and what supplements to take and I’ll just go do it as if we could do it in five minutes. And I said, if that were true, I could just put that on a video and everybody could just YouTube it and I would not need a job. I would just pick another profession, you know, if it was only that easy. But if we talk about like a range of…

Linda Bluestein, MD (58:45)

Right.

Right.

Ginger Garner PT, DPT (59:00)

Just like I’ll talk about a range of movements that might be helpful for someone or pelvic floor up training, pelvic floor down training, or what I see on a psoas on imaging might be important for someone in the supplement world. So you know where I’m going with this now, because people want just, just tell me what supplements to take and it’ll be fine. Totally not that easy. We can’t YouTube this stuff. ⁓ That’s why you spend decades of your life, right? Dedicated to it. You go to conferences, you read more papers, you write more papers, and then you realize,

Linda Bluestein, MD (59:15)

Right.

Ginger Garner PT, DPT (59:30)

wow, we don’t really know much about this. We need to learn more. ⁓ What are some of the things that you look for as like red flags immediately? Are there things like magnesium, for example, or manganese or other things that you go, okay, let’s look at that first. Of ⁓ course, you may need more labs or more consults or things like that to tell, but are the things that are…

Linda Bluestein, MD (59:33)

Mm-hmm. Mm-hmm.

Mm.

Mm-hmm.

Right.

Ginger Garner PT, DPT (59:56)

the red flag, green flag for you when it comes to the whole supplement thing, because that’s on everybody’s mind all the time.

Linda Bluestein, MD (1:00:01)

Right, right, it is. And I always think of food first, but depending on where you live, you might not be able to get enough vitamin D through your sun exposure and things like that. So vitamin D, I almost always list that one first. And the good thing is we can test for that very, very easily. And a lot of people, even if they can get their doctor to do a test, if they’re 30, then the doctor says, you’re fine. Well, I like to have people in the higher end of the normal range. ⁓

Ginger Garner PT, DPT (1:00:04)

Mm-hmm.

Yeah.

Linda Bluestein, MD (1:00:30)

And so a vitamin D supplement can often be beneficial. Obviously, this is not medical advice. This is information. ⁓ But vitamin D is a hormone. And it’s very important for pain processing, for mood, for sleep. And so vitamin D is a really, really good place to start with getting a blood test. And nowadays, you have such incredible direct access that you can even get a test yourself, that you can just order the test. You don’t even have to go to a doctor for it. So that’s one good thing.

Ginger Garner PT, DPT (1:00:56)

Mm-hmm. Mm-hmm.

Yeah.

Linda Bluestein, MD (1:01:00)

For

magnesium, I do think magnesium is extremely important. However, the test for magnesium is not good because most magnesium is stored in the tissues and not in the blood. So you can do a test for magnesium, but if the magnesium in the blood is low, then you know you really have a huge problem. ⁓ It usually is going to be normal even if you are depleted in your body. So magnesium testing, I don’t normally do, ⁓ but I often will recommend magnesium supplements.

Ginger Garner PT, DPT (1:01:26)

Mm-hmm.

Linda Bluestein, MD (1:01:29)

Now, the type of magnesium salt matters a lot. if magnesium citrate is going to be very different from magnesium malate or glycinate or magnesium L3N8. So I ask people what their pooping is like and what their Bristol stool score is in order to help them figure out if a magnesium supplement is appropriate. And if so, what would be the right one? ⁓ Another thing that’s really important is vitamin C.

Ginger Garner PT, DPT (1:01:32)

Yeah, true.

Mm-hmm.

Yep.

Linda Bluestein, MD (1:01:57)

Vitamin C is very important for making connective tissue. It’s a great antioxidant. It helps stabilize mast cells. So vitamin C is something that I often will prescribe. And in particular, there’s a very specific magnesium supplement that I like because it is sustained release. So there’s a very specific one that I have on the Fullscript supplement dispensary part of my website or protocols. So.

Ginger Garner PT, DPT (1:02:12)

Hmm.

Is that vitamin

C or magnesium? the vitamin C. Okay, yeah. Yeah, I think you said magnesium, but I just wanted to clarify for the listener. I like that, a sustained release vitamin C. Yeah. Yeah.

Linda Bluestein, MD (1:02:23)

For the vitamin C, sorry. Yeah, for the vitamin C, the sustained. Yeah, I’m sorry. A sustained release vitamin C. So I apologize.

Yeah, so the first one was vitamin D, which is vitamin D3 with K2. So that’s the other thing is there’s very specific nuances with each one of these that can make a big difference. So vitamin D3 with K2, so you mineralize the bones and keep the.

the calcium deposits in the bones and not in the blood vessels. So that’s the first one. Then we talked about magnesium and all the different magnesium salts. And then the third one is vitamin C. And in that vitamin C, I like the sustained release because it is a water soluble vitamin. And then B vitamins can be very helpful, especially if people have a lot of problems with headaches, especially if people have migraines. Vitamin B2, which is riboflavin, can be very, very helpful. And if people have a methylation variant, then

Ginger Garner PT, DPT (1:03:05)

Yeah. Yeah.

Linda Bluestein, MD (1:03:18)

Sometimes taking a methylated B complex can be helpful. Again, I have specific ones that I do like for these. And the magnesium can also help with migraines as well. So those are a few of my favorite supplements. Also fish oil can be very helpful. But yeah, it depends on the person, what they’re going through. But those are some of my favorites.

Ginger Garner PT, DPT (1:03:26)

Yeah.

Yeah. Have you had, I’ve had a lot of patients who try to take, because B complex is so important and many don’t get it. What if they’re vegetarian or vegan or that kind of thing? And yet I’ll have a patient come back and go, I felt so nauseated when they tried to take B vitamins. you had that happen?

Linda Bluestein, MD (1:03:48)

Great.

That’s interesting. don’t think, I mean, I’m sure I’ve heard it, but I don’t think I’ve heard that on a regular basis.

Ginger Garner PT, DPT (1:04:02)

Yeah.

Yeah, and of course that’s, know, maybe, ⁓ obviously cause for looking at, what were they doing that day? What else were they taking? What did they eat? Were they hydrated? What were their stress levels? You all those, that type of thing. So I have one more question. I have a lot of questions actually. We’ll have to come back and do a part two later, but one of the things that I see a lot, and I think that is, it’s so difficult for people to get,

Linda Bluestein, MD (1:04:22)

Sure.

Ginger Garner PT, DPT (1:04:32)

properly diagnosed is postural orthostatic tachycardia syndrome or POTS. Yeah, you knew what I was gonna say. So, okay, so we have these coexisting conditions, POTS, MCAS, central sensitization and EDS hypermobility. How are they muddying the diagnostic waters? Like how do you step through that process with people? Because by the time they reach you,

Linda Bluestein, MD (1:04:36)

⁓ yep. yeah. yeah.

Ginger Garner PT, DPT (1:05:00)

They have head scratched and bang their head against a proverbial wall and they’ve been gaslit. How do you walk through that process of kind of teasing all those out and then treating those?

Linda Bluestein, MD (1:05:09)

Yeah, no, it’s definitely very tricky, but the good thing with POTS is we have very clear diagnostic criteria. So I will do ⁓ orthostatic vital signs in my office, and I have them lay down for 10 minutes first, and then get a baseline set of vitals, and then I have them stand up and lean against a wall, and I will do another full 10 minutes worth of blood pressure and pulse readings. Now, I do this if I suspect POTS. Obviously, if they already have a diagnosis of POTS, then I usually don’t do it.

And especially if someone else is managing their pots, but usually that’s not the case I have a lot of patients that have pots and I asked them who’s managing your pots and they’re like no one like I got the diagnosis from a cardiologist and they said, you know, take more water and salt and See, yeah, good luck. ⁓ So that’s really really frustrating because yes, these are serious conditions ⁓ if the autonomic nervous system is Dysfunctional like in pots, you know you you

Ginger Garner PT, DPT (1:05:52)

Right, right.

Linda Bluestein, MD (1:06:05)

Yes, sometimes the lifestyle changes like the sodium and water and, you know, gradually increasing your exercise. Sometimes those things are helpful, but there are people who need medications. so anyways, but I’ll, but I’ll do the orthostatic vital signs and, and look for that increase of 30 beats per minute in an adult or 40 beats per minute, age 19 or younger. And you also need to have symptoms consistent with POTS for at least three months in order.

Ginger Garner PT, DPT (1:06:16)

you

Linda Bluestein, MD (1:06:32)

to make the diagnosis for POTS, but I will make the diagnosis of POTS. I do that quite frequently.

Ginger Garner PT, DPT (1:06:36)

Yeah, yeah, it’s so detailed. We could have a whole other talk on just pots, you know, and how that overlaps alone. I think we should, let’s come back to it. So I think that ⁓ in light of that, my question is, because women, young girls, and there are some men, yep, I have had some men with us too, it’s just so much more less frequent.

Linda Bluestein, MD (1:06:41)

Yes, we could.

Ginger Garner PT, DPT (1:07:05)

What advice would you give to people navigating the overlap between these multiple invisible illnesses without losing hope? Yeah.

Linda Bluestein, MD (1:07:16)

Yeah, yeah.

So the first thing I would say is believe in yourself. It’s one thing to be gaslit by other people, but it’s another thing to gaslight yourself. And you’re right. It’s not that I don’t still do it. I’m just trying to be aware of it, you know, and trying to do it as little as possible, but showing yourself compassion. And even if you go to the doctor and the doctor doesn’t believe you, don’t start doubting yourself because you know your body better than anyone.

Ginger Garner PT, DPT (1:07:27)

We all do it. ⁓

Linda Bluestein, MD (1:07:44)

So that’s the first thing would say. The second thing is, it is very, very helpful to be as organized as possible for your appointments because most of the time you don’t have a lot of time. So you need to be able to present your story in a really succinct manner, but yet being comprehensive. If you have like a one sheet, I talk about this medical one sheet on my podcast and you would have their like ⁓ important imaging findings.

or your diagnoses, your medications, again, with the most important things. So you’re not gonna have a CBC from 10 years ago that nobody cares about that anymore. So you need to make sure that you are only including the most relevant things. And another document that can be really, really helpful is a bullet point list of your symptoms by system. So you could have constitutional, which would be fatigue, waking up feeling unrefreshed, poor sleep, ⁓ things like that.

And then you could have neurologics. So tingling in your fingers and toes, ⁓ ringing in your ears, things like that. And then you could have musculoskeletal joint pain, muscle pain, ⁓ tendon injuries or whatever it might be. So a gastrointestinal would be another ⁓ system of the body. So if you break down by system and then try to organize your symptoms that way and have them as a list and as a bullet point list, that can be very, very helpful.

for that clinician to just glance at briefly ⁓ and make the most out of your appointments.

Ginger Garner PT, DPT (1:09:16)

Yeah, definitely. So you’re so right about the time thing. I think that probably answers the next question too, which I had two little questions left and I think we may have answered one. if you could shift one thing in the current medical system, one would be that people actually have the time, that we don’t have such a high level of burnout in our providers that they’re actually able to provide and sit down with enough time. But what else would you shift in our current system to better serve this population and

Linda Bluestein, MD (1:09:33)

Mm-hmm.

Ginger Garner PT, DPT (1:09:46)

I will know because in seeing patients, I’m licensed in a bunch of states and in seeing patients across multiple states, some of them don’t even have providers for the services that you offer in their state. So how can people find you?

Linda Bluestein, MD (1:09:58)

yeah.

Yeah, I have people that I talked to from all over the world. If you want to be a patient, I do have to see you in person for the first appointment and then every year after that. ⁓ Virtual appointments, so this is the tricky part for the virtual appointments in between. ⁓ You need to be sitting in Colorado or Wisconsin. Like you said, it’s unfortunate medical licenses are state dependent, so I am licensed in Colorado and Wisconsin.

Ginger Garner PT, DPT (1:10:20)

Mm-hmm.

Linda Bluestein, MD (1:10:26)

And I’ve thought about getting other licenses, but each state also has their own requirements for CME and other things. And I don’t have a big administrative staff to keep track of that for me. Yeah, yeah, yeah. I have a friend who’s a radiologist and he works for a very large radiology organization and reads films for all over the place. And he’s licensed in like 46 states. And I’m like, how do you keep track of all that? And he’s like, I don’t have to.

Ginger Garner PT, DPT (1:10:31)

Mm-hmm.

or a clone.

Wow.

Linda Bluestein, MD (1:10:55)

They keep track of it for me. So I don’t work for a big organization like that. I work for myself. But I did that because I wanted to be able to control everything about my practice, the length of the first visit, the length of the follow-up visits. I didn’t want anyone else telling me, you can’t do this, you can’t do that. ⁓ So I made that conscious choice when I first started opening my practice. ⁓

Ginger Garner PT, DPT (1:10:57)

Yeah.

Mm-hmm.

Linda Bluestein, MD (1:11:21)

It’s difficult being on your own. It’s difficult, but that’s also why I started the podcast because I felt like I needed to provide information to people who could not afford to come see me for a one-on-one appointment as a patient or who could not even afford to come see me for coaching. So if you live in a state where I’m not licensed or if you can’t come to see me in person for the first appointment, I can see you as a coaching client.

And if I do that, then we have a one-on-one conversation. I listen to you tell me your story. And then I give you customized information that you can take back to your medical team and or there’s lots of things in there that you can work on yourself. So I will give you information about different medications that could be helpful with different things. A lot of people have taken these notes that I’ve written and they’ve taken them to their providers who are

not as knowledgeable about EDS or HSD and they’ve actually gotten an EDS diagnosis because they looked at it, they looked me up and they were like, okay, so you discussed all of these things with her and then they do their own physical exam and decide that you meet the criteria. So that can be very, very helpful. And I started doing that actually in 2022 around the time that I gave that presentation because I realized that there was this unmet need. There were all these people who

Ginger Garner PT, DPT (1:12:28)

Yeah.

Linda Bluestein, MD (1:12:41)

They just needed somebody pointing them in the right direction. And so I thought, well, maybe this is something that I can offer as a way of, know, it’s kind of a bridge between the podcast, which, you know, obviously, you know, it’s an incredible means of getting information out to people. And I also now have a newsletter on Substack. And I really like that method of communication a lot because not everyone loves listening to podcasts and they have difficulty learning that way and they’d rather

Ginger Garner PT, DPT (1:13:08)

right.

Linda Bluestein, MD (1:13:11)

learn through a written format. So that’s hypermobilitymd.substack.com. through there, I have newsletters that I write, and I’m going to start sharing more and more things there. Because on Instagram, for example, you’re limited to like 2,000 characters, I think. So it’s really hard to say a lot in that amount of space.

Ginger Garner PT, DPT (1:13:28)

Mm-hmm.

Yeah, yeah. All right, so tell people where they can find you, Instagram, website, et cetera.

Linda Bluestein, MD (1:13:38)

Yeah, so

I’m quite active on Instagram at hypermobilityMD and also at bendy underscore bodies, but I’m also on LinkedIn, Facebook, ⁓ X, TikTok, most of those at hypermobilityMD. And I also have a website hypermobilityMD.com and the podcast website is bendybodyspodcast.com.

Ginger Garner PT, DPT (1:14:04)

Thank you, thank you so much for being here today. ⁓ What a wealth of information and if you’re okay with it, we will absolutely hold you to it have a part two.

Linda Bluestein, MD (1:14:06)

Absolutely.

Yeah, I would

love that. Yeah, there’s there’s always so much to talk about. you know, it’s just I’m so grateful to you for having me on your show and for the incredible work that you’re doing. You know, we we really need to help this population of people that are suffering. And a lot of these people are young, so they have all these years of productive life ahead of them. And, you know, we can really, make a difference by spreading this information and.

validating their concerns and giving them the resources that they need and that they deserve.

Ginger Garner PT, DPT (1:14:49)

Well said.