My Essential EDS Advice | Office Hours

[00:43] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. We're going to do something a little different today. You have submitted so many great questions and comments, and we're going to go through some of those. I actually have already accumulated almost 300 questions, and I would love for you to keep submitting those. So we will share a link in the show notes, but you can also submit those on the website bendybodiespodcast.com.
[01:06] A couple of the questions we are going to cover today include what to ask your doctor in order to assess if this is a good fit for you or not, and whether a diagnosis is important. I am periodically going to be doing these solo episodes, so be sure to submit your questions because today you are my guest. You want to be sure to stick around until the very end because I am going to be sharing one of my favorite hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Let's get started.
[01:51] Our first question is from Laura M. I've recently found your podcast and I want to say thanks for this lovely and thoughtful show. I haven't listened to that many episodes just yet, although I've marked a lot to put in my queue, and I've already learned so much. I've suspected my hypermobile EDS for years, but only recently at age 48 received a diagnosis or even serious consideration that all of my issues might be indeed connected by connective tissue. Years and years of medical and even self-gaslighting are sadly not unique to my experience. I wonder what difference it would have made if the dots had been connected earlier.
[02:28] To that end, I wanted to propose a potential episode topic. What difference does a diagnosis make? How might knowing more about one's bendy body change experiences and outcomes with respect to schooling, sports, healthcare, dentistry, career, et cetera? I am particularly interested in answers I can report back to my daughter's orthopedist who 2 years ago rebuffed my concerns that her subluxing patella, translucent and fragile skin, allergies, migraine, fatigue, and autism might be indicators of a connective tissue disorder. What difference would it make, he asked? If it's not the vascular type, it wouldn't change anything about her treatment anyway. Then he proceeded to prescribe another round of physical therapy, which didn't help and fortified her commitment to shunning all future physically active endeavors.
[03:16] I also want to be able to convince my brother and sister-in-law, who are both physicians, to evaluate their own son, who most definitely has EDS and is already being subjected to medical gaslighting. I do my very best to validate him whenever I can, but it is hard without overstepping the bounds of the relationship. Thank you again for sharing your time, knowledge, and talents with the world through this podcast. It means so much to be connected with others who have also traveled this bumpy road.
[03:44] I wanted to start with this question from Laura M. because I feel like it synthesizes so well so many problems that people face. And over the time that I've been doing this podcast, which has now — this is our 5th season — I have changed my view on the importance of a diagnosis. A correct diagnosis is very important, and while we still want to make sure that we are addressing symptoms and that we are treating symptoms as the first priority and not necessarily the label of the condition, we find that not everyone is even in the right area in terms of the diagnosis that they suspect.
[04:26] It's really difficult because a lot of people can fit the phenotype or the clinical picture of hypermobile EDS or HSD, but they may or may not actually have that as their actual diagnosis. And we don't know yet what the genotype or the underlying genetic code is for hypermobile EDS. So we don't know necessarily what different diagnosis might be most appropriate for any given person. Since so many things can cause the hypermobile EDS or HSD phenotype or can cause overlapping features, it is ideal if you go into your doctor's appointment with a more open mind rather than, "I think I have hypermobile EDS and I'm looking for that specific diagnosis." Ideally, you want them to take a fresh look at you and look at you as a whole person and be able to do a proper full assessment.
[05:25] We're going to talk a little bit later about how to describe your symptoms, but it's very important to organize your symptoms, organize your information in a way that is succinct yet complete. We also have an upcoming episode where I interviewed a young man who was originally diagnosed with hypermobile EDS, and then he saw a geneticist with expertise in — who actually will also be interviewed in the future — and he was actually evaluated and later diagnosed with Type 2 Classical-like EDS, or the AEBP1-related EDS. There are actually only 11 cases in the literature of this type of EDS. So this is one of the ultra-rare forms. But originally, they thought he had hypermobile EDS.
[06:07] So it's very important to, as much as possible, start with our core symptoms and anything especially that is more unique about our clinical picture, because there's a lot of things that are quite common. For example, pain. Pain can be caused from many, many different things, and other things that are more specific. So for example, if you've had signs of vascular fragility, like an aortic dissection, aortic aneurysm, if you've had muscle rupture, if you've had organ rupture, something like that — those are more specific. This ultra-rare type of EDS was first reported in 2016, and it does have some overlapping clinical features like skin hyperextensibility, joint hypermobility, easy bruising, but it has a couple unique features like hair loss and arterial weakness.
[07:05] So while you might go into your doctor's office suspecting a certain diagnosis, it's okay to mention that diagnosis but also keep an open mind because maybe you have that particular thing like hypermobile EDS, or maybe you have something that is related. Also, a diagnosis is important because of the validation and understanding that you get. So whether that validation is coming from yourself, your friends, your family, or your healthcare practitioners, it can be very, very important because then they can look for certain specific resources. They can be directed towards certain papers in the literature, and as they read that information and/or do something like listen to this podcast, they can get more information and have a deeper understanding of what it is that you're going through.
[07:50] And oftentimes I hear from patients — I hear from patients all the time, actually — that they feel so validated once they have the diagnosis because they know that they're not crazy. A lot of us do gaslight ourselves, so this is a very common problem. As I mentioned earlier, we definitely want to treat symptoms and not labels. So you want to make sure that you go into your doctor with a clear list of what your symptoms are. We're going to talk again about this a little bit more later because this is really, really important.
[08:26] There are some pros and cons in terms of having a diagnosis when it comes to insurance. So sometimes with life insurance, even if you have a diagnosis of hypermobile EDS, which is not life-shortening per se, sometimes it does make it difficult to get life insurance. So that's one thing to keep in mind. Sometimes it can be helpful on the insurance side to get more specialist visits and more physical therapy visits, things like that, if you do have a hypermobile EDS or HSD diagnosis. So those are just some of the considerations when it comes to getting a diagnosis.
[09:06] And I want to thank Laura so much for submitting your question. And I might even dig back into this question on a future episode because there were quite a few little points in there that I think are really important. We want to balance the appropriate level of intervention with the symptoms that a person is experiencing. So we don't need to overmedicalize if someone is doing quite well. We don't need to make them overly afraid to do things because that can actually be harmful. So we want to match where they're at. So if someone just needs some resources and information, we offer them that. If they might start to experience some symptoms, maybe they would do better with some activity modification. And if someone is starting to experience some symptoms, then of course we want to address those and especially address the underlying cause whenever we can.
[09:59] So another thing that I will add to that is how I felt when I got my diagnosis. So this is back in 2012, and my entire life I had been having various different symptoms. I had no idea that they were connected. In fact, Laura M. said something about all the issues that she was having. And at one point, a family member actually said to me, "You have so many issues that your issues have issues." And it was really hard, though, because when I was diagnosed in 2012, I was really suffering a lot. I was having a lot of problems still. And when I finally got diagnosed, I did feel such a sense of relief — oh, there is an explanation as to why I could be experiencing all of these different things that throughout my entire life had been going on in my body. And I had blamed myself a lot, so it was really a huge relief.
[10:59] The doctor did follow up the diagnosis with, "There's really not much that you can do." I think he did give me a couple of resources. There wasn't much available, really, at that time — certainly no podcasts or anything like that. And I basically kind of left that appointment feeling very validated and feeling like, okay, at least now I know what I'm going to be dealing with. But I also felt like, because he said there's not much you can do, I was like, I'm going to prove him wrong. So basically, ever since then, I have been trying to figure out ways to improve quality of life for people with these conditions, which of course selfishly includes myself. In fact, I was my own first patient, I guess you could say. I started with experimenting with things on myself and reading as much as I possibly could get my hands on in order to come up with some therapeutic interventions that might improve my quality of life.
[11:57] And I would definitely, without a doubt, say that my quality of life is much, much better now as I'm approaching 60 — wow, that's weird to say — than in 2012 when I was obviously much younger and was doing a lot worse at that time.
[12:15] Okay, so let's move on to the next question. And this is from K.R. — I'm going to say K.R.S. She says, hello, my friend Gemma mentioned your research for Ehlers-Danlos syndrome and autism. 3 months ago, I had a spontaneous coronary artery dissection. And although I don't present as flexible, I wonder if I have cardiac EDS. I'm diagnosed with autism and fibromyalgia. Yours gratefully.
[12:43] So we're just going to talk super quickly about spontaneous coronary artery dissection, or SCAD. SCAD actually mostly affects females, and there are some risk factors, but actually most of the time it affects young, healthy people who do not have the normal risk factors for heart disease, which include diabetes, smoking, high cholesterol, or obesity. Some of the potential risk factors for SCAD include being female, as I mentioned; pregnancy and giving birth — it can actually happen in the first few weeks after delivery, probably related to those hormonal changes; blood vessel conditions such as fibromuscular dysplasia that can weaken the walls of the arteries; intense exercise, so intense aerobics or heavy weightlifting can actually be potential triggers for SCAD; and intense emotional stress.
[13:39] There is a condition — actually, Takotsubo syndrome, I think it's called — I should look this up. I'll put the name in the show notes of what this is actually called, but there's a syndrome where you have intense emotional stress and it causes coronary dissection. So what this means is the blood vessels that go to your heart can actually suddenly, basically, like explode. The interior wall kind of breaks apart from the exterior wall, and it's obviously a very, very serious condition. So this can happen due to intense emotional stress such as a sudden death in the family, job loss, etc. And then there are inflammatory conditions such as lupus, ulcerative colitis, rheumatoid arthritis, celiac disease, Crohn's disease. Those conditions and acquired connective tissue conditions can cause this as well, as can hereditary disorders of connective tissue. There are also some recreational drugs that can be related, such as cocaine and amphetamines, and also intense hormonal therapy.
[14:49] The next question was submitted on the Google form, and it's from somebody who wanted to know how do they pace with hypermobile EDS, MCAS, and dysautonomia. This person hears a lot that it's important to pace to reduce flares, etc., but how do they pace when they're living daily life, caring for children, etc.? They wonder if there are different things to take into consideration with these conditions, and also how to cope with having these conditions as a parent.
[15:16] So the first thing that I would say is learn how your body talks to you. I had to learn this, and it talks to me in different ways at different times, and I have to kind of factor into consideration what else is going on at that time. So sometimes a little bit of pain is something really, really important to pay attention to — a sign that maybe something serious is going on. And other times a little bit of pain or discomfort might be something that it's okay to push through.
I'm going to use an example from my own life. Maybe 5 years ago, my husband gave me a Fitbit watch — actually this watch, he gave this to me. It's not a Fitbit, it's a Polar watch. And on the box it says, "Today is a great day to set a record." And I was so upset because I was like, "I'm not setting any records." When he gave me that watch, I was walking probably just the dog, but I wasn't going for any hikes or anything like that, for sure. So I started paying attention to the data on the watch and kind of realizing I could correlate how many steps I took, or how far I walked in a given walk with the dog, with how I felt afterwards. And I realized that I could push my activity a little bit more and a little bit more. And now more lately, I actually have been able to go on actual hikes. So I pay attention to how many feet of elevation change there is, because that's a very important factor, and of course the distance, and I document in my app afterwards how I felt. So through the use of this Polar watch, I really have been able to increase my activity. Now, I can't do that a whole bunch of days in a row because that would be more load on my body than my body really wants. But overall, we do a lot better when we're more physically active.
[17:21] So the kinesiophobia that so often happens — and I remember when I first read about kinesiophobia back in 2016 when I started writing my first paper on EDS, and it was called "Pain Management in Hypermobility" — when I was writing that paper, I read about kinesiophobia, and I went, "Oh my gosh, that is exactly what's happened to me." Because I had gotten injured doing small little things: reaching for my purse, doing handwriting, taking something in or out of the oven, getting up off a chair. I had injured myself doing so many of these small things, so I was so afraid to move. I was afraid to do anything. But what I figured out is that as we move more, our tissues actually do get stronger. If you think about what people are doing when they are working out at the gym, they're making very specific changes in their load so that their tissues will get stronger. Now, obviously, if we have connective tissue that doesn't build as strongly or has difficulty with remodeling, we have to be really careful about that kind of thing. But we do need to also make sure that we are giving enough load on our tissues so that they know that they need to get stronger.
[18:34] So learning how your body is talking to you at any particular moment is really important. And I would urge you to do that with a curious mindset and not as much of an anxious mindset. Be like, "Huh, I wonder what my body is trying to tell me right now?" Because these messages can change a lot under different circumstances. Stress makes our pain worse, almost no matter what the source of the pain is. I remember when my pain was really, really bad back in 2009 and 2010, I had a doctor put their hand on my knee and say, very patronizingly, "You have to accept that this pain is psychosomatic, and the MRI looks the same." It was so upsetting. I understand now that whether it's good stress or bad stress, whether we have exposure to new foods or other things in our lives that have changed, that can change how our bodies feel. But that isn't necessarily something that we should panic about. We could take that information and go, "Huh, I wonder what's going on here. I wonder what I might need to change."
[19:53] Because sometimes, let's say you have a new symptom. That definitely could be your body saying you need to do this movement differently, or you need to change how you are doing this certain activity. So if you suddenly get pain — like sometimes I get pain in my wrist when I'm taking things out of the oven, and that's a definite sign to me that I need to be positioning differently or using two hands instead of one hand. So pain can be an early warning sign, but sometimes a certain amount of discomfort can be something that we need to push through. And Jennifer Milner and I talked to Alyssa Seeley about this in an episode previously. She is a Paralympic athlete, and she talked about how she had to learn when to push through and when to hold back. And it's good timing to mention that episode because the Paralympics are just starting. So that's kind of exciting.
[20:49] Anyway, do, but don't panic. Think of previous successes that you've had and previous times where you have been able to heal your body and have confidence that you can get there again. Sometimes journaling can be really helpful because then you can look back and you can see the progress that you've made, or you can see, oh, on that particular day when I was having this discomfort, I really did need to kind of back off and do less. There are also apps that you can use that can help you track these things and help you know when to push a little bit harder and when to ease up.
[21:26] As a parent, I do have a few suggestions. Actually, some of these are useful whether you're a parent or not. The first one is: good enough. Now, I realized as I was writing this, I need to take my own advice because I am a perfectionist, like I'm sure a lot of you are. Sometimes we get the first 80% of gain on something within the first hour of working on it, and then we put in another 30 hours trying to get that last 20%. And is it really worth it? Is the juice worth the squeeze at that point? So you want to think about, with some of the tasks that you do, what's good enough, and where do you need to really try to achieve that excellence.
[22:14] Also, I think with parenting, it's so important to have realistic expectations. If you're a parent and you have EDS and you have children — depending on their ages, of course their needs are going to be different — you just need to remember that you need to take care of yourself in order to take care of your children. And you've probably heard the saying, "Self-care is not selfish," and it truly isn't, because if you don't take care of yourself, you won't be able to take care of your kids. But I would say even more importantly, if you take care of yourself and you're prioritizing your own physical and mental health, you are sending a message to your children that their physical health and mental health is important. Because they will see that modeling that you're doing. There's that saying: they hear what you say, but even more importantly, they see what you do. So you want to be a good role model that way.
[23:08] You also want to ask for help and accept help for yourself and for your children. For whatever things that you can delegate, definitely delegate when you can. It's so common, that boom and bust cycle. I often tell people to use a green, yellow, red scale. So if on a given day you did a variety of activities — maybe you're actually doing quite well and you're able to go to the grocery store, and maybe you work from home and you got a few hours of work in and you were able to do some things with your kids, and you're like, "Okay, I managed okay with that" — so that would be like a green activity level day for where you are currently at. But then let's say on another day you did way too much. You tried to run the kids to like 4 different things, and you were sitting, and sitting's a bad thing for you, it's really painful, and the next day you're in bed, and the day after that you're in bed. Well, now that was a red day of activities. And yellow, of course, is in between. So the journaling will help you keep track of that — okay, that was too much at this point in time. Maybe in the future that will change.
[24:24] A quick little vignette back to my own story. When I was not doing well, I could go up and down the stairs one time every day. I mean, I would go up to go to bed, and then I would come down in the morning, and that was it. Just one time up, one time down. So I would have to plan very carefully when I was going to be going up the stairs and when I would be going down the stairs and make sure that I had duplicates of things that I needed, etc. And now I view the stairs as a great way to get exercise. And so if I have to run up and down the stairs some extra times, it's like, oh, that's great, because I'm going to get some extra exercise.
[25:00] So again, accepting help, asking for help, and also knowing that where you are is going to change over time. If you have a partner, communicate with them and/or anyone else in your inner sphere. Make sure you communicate your needs and make sure that they are communicating their needs with you. And try as much as you can to meet each other's needs. A mistake that I see some people make is — the person who has chronic illness sometimes thinks that their needs should take precedence all the time, and I would say that in most relationships long-term, I don't see that working out very well. So it's important that you both have needs, and even if you are chronically ill, there's probably needs of your partner that you will be able to meet, because a lot of our needs are emotional. So I think it's really important that we each be able to communicate our needs.
[25:57] We are going to take a quick break. And when we come back, we are going to talk about what questions you should ask your healthcare practitioners when assessing if they're knowledgeable and experienced enough to help you. We'll be right back.
[27:17] Okay, we're back. The next question that I got was, what questions should someone with hypermobile EDS or HSD ask a practitioner when assessing if they're knowledgeable and experienced enough and the right fit for them. So the first thing I would suggest is, which of these 3 things do you need from this person? Do you need surgery? Do you need a diagnosis? Or do you need treatment? Because the answers are going to vary depending on which of those that you need.
[27:46] So let's first talk about surgery. What type of surgery are you contemplating or do you think that you need? The answers will be very different if you're looking at something that's more straightforward like a carpal tunnel release, or if you're looking at a really, really big surgery like a cervical fusion. You want to know what their surgical skill set is. So ideally, you can find out from the office what are all the types of surgeries that they do, because the more types of surgery that they offer or that they do, the bigger their toolbox, the more likely they are to match what you need with what they can offer. Otherwise, if they're kind of — I'm going to say a one-trick pony — then really the question is going to be more, when you go and see them, are they a good fit for this surgery they have to offer or not? But they're not going to be able to offer you option A versus B versus C.
[28:52] Now, when somebody gets really, really specialized — for example, I interviewed Dr. Feigenbaum the other day, and he's a Tarlov cyst surgeon — he doesn't have a lot of other things that he does, I don't think. There are other surgeons that do, for example, hip labral tears. So it's okay if they're really super specialized, but just make sure that you know that going into that appointment, because you can ask them, "Am I a good candidate for this specific surgery that you're proposing, or do you think there are some other options that I should be considering?" And hopefully, even if it's not a surgery that they do, they have colleagues that do offer those kinds of surgeries. And at least ask, "Should I at least be considering some of the other options?"
[29:42] So I would start by asking, what kind of different surgeries do they do? And how many of those surgeries have they done? You want a surgeon that has done a very high volume of whatever surgery it is that you have. You ideally don't want to be within the first hundreds, if possible. Of course, this is also a little challenging because you also want a surgeon who is conservative in their patient selection. So it's kind of a little bit counterintuitive because if someone is more conservative in their patient selection, their numbers might not be quite as high, but you want to make sure they're high enough. So you just want to find out, how many of XYZ surgery have they done? And also you could ask, have they evolved their techniques over time? A really good surgeon will continue to evolve their techniques.
[30:39] So I interviewed Dr. Adam Hansen, who is a rib surgeon, and he has developed a number of techniques. He said his patients labeled them the Hansen 1.0, the Hansen 2.0, and I believe he's now on the Hansen 3.0 technique. A lot of people have slipping rib syndrome that have hypermobile EDS or HSD and other hereditary disorders of connective tissue. And so he has developed these techniques, but he continues to evolve them over time. I know that's true of Dr. Feigenbaum as well. My husband is a surgeon. I know he did the same thing.
[31:17] So you want to ask that question as well. You want to ask how familiar they are with EDS and how many patients they have operated on that had either known or suspected EDS. So you ask that question, and then you also ask the corollary question of: how do you alter your techniques with someone with EDS, if at all? And I would also ask how familiar is the anesthesia staff with EDS. Because for most of these surgeons, they're operating at a very limited number of places. Oftentimes they're working only with a very limited number of anesthesiologists. So they will know if the anesthesiologists are familiar with EDS as well.
[32:02] Regarding patient selection — very, very, very important. You do not want to go to a surgeon and have a surgeon operate on you that pretty much operates on everyone that walks through the door. You want someone who is turning people away because you want someone who is carefully selecting which patients they do surgery on, because those are the patients that are the right fit for that surgery and are going to have a better outcome. So these are a lot of questions that you could ask the office staff so that you can maybe more selectively ask questions of the surgeon.
[32:39] Try to get as much of this information beforehand. Ideally, you want to have an office where the staff are responsive and you have good communication and you're able to get your questions answered. So if you have any problems after surgery, you can find that out as well. You also want to find out: do I need to stay in town after the surgery? Because a lot of people are traveling for surgery. How long do I need to stay? And what do I need to do after I leave? Who will take care of me after I leave? How will I communicate with your office? That kind of thing.
[33:12] Okay, so that's the first category — questions that you want to ask of a surgeon. Of course, you also want to ask about their outcomes. That's very, very important. You want to ask about long-term outcomes and short-term outcomes and how they define success and what they do in the event that a surgery is not successful. How do they handle that? So those are some things to ask a surgeon.
[33:38] If you were talking to a healthcare practitioner that might be making a diagnosis for you, it's very, very important that they have seen a large volume of people with connective tissue disorders. Over time, you definitely get a better sense of, you know, what skin should feel like in a normal person versus when it's hyperextensible or the soft velvety skin, that kind of thing. And those are subjective findings, so you want someone who has seen a lot of people. You also want to find out who is it exactly that you're going to be seeing in the office and who will you be following up with.
[34:16] It is possible for any doctor or DO, APNP, nurse practitioner, or physician's assistant to diagnose basically any condition. So there's no rules against me diagnosing an eye condition. Okay, many of you know Dr. Glaucomflecken, and I wouldn't diagnose an eye condition, and I probably wouldn't see him diagnosing EDS because they're such vastly different things, right? So yes, technically I could diagnose an eye condition, but I shouldn't because that's not in my wheelhouse. So you want to make sure that the person that you're seeing actually knows enough about the criteria and understands these conditions because it does require time and training in order to make the diagnosis. Very few people understand fully the whole set of 2017 criteria, which, by the way, are changing, so we will be getting new criteria before too long. And I did just recently interview Dr. Hakim, and we talked a lot about the 2017 criteria and how he specifically approaches those criteria. So I definitely urge you to check out that episode as well.
[35:32] When it comes to treatment, if you are talking to a healthcare practitioner that might be treating you, you want to find out how long can you see them for. Is there a certain limit? Sometimes you can only see them for a couple of visits and that's it. Some of the specialty centers don't really offer treatment at all. They do diagnosis, but then they send you back to your local doctors for treatment. So that can be a bit problematic because your local doctors may not know a lot about these conditions. You want to find out, if you're talking to a doctor who possibly can do treatment for you, what kind of volume of connective tissue disorder patients have they treated. If they have done a higher volume of patients, then they have likely more experience. They likely have a better network for referrals. And you also want to find out, are you going to be able to follow their treatment plan and will you be able to do the return visits? Do they offer virtual visits or is everything in person? You also want to ask what medications are prescribed most frequently.
[36:37] One word of caution is what somebody the other day called the gold rush effect, and I thought this was a really great way of putting what's happening right now in healthcare, specifically in the space of EDS. The amount of awareness about EDS has just grown exponentially, but not always in helpful ways. And I feel like a lot of people are adding the word hypermobility or EDS onto their website as a way of getting in more patients. And these, of course, would be doctors who are in private practice. So you want to be just careful if they're an expert in all of these other things and in hypermobility and in EDS — does it make sense? Does it seem like those things fit well together? If it's a rheumatologist and they're an expert in acquired disorders of connective tissue and autoimmune conditions and EDS, yeah, that makes sense. If they're a physical medicine and rehabilitation or PM&R doctor and they're an expert in sports medicine and rehabilitation and joint hypermobility and EDS, yes, that makes sense. But if they are an internist and they list a whole long list of things that are completely unrelated that they have expertise in and EDS, you just want to be careful because maybe they do or maybe they don't.
[38:03] The next word of caution is if you see people talking about curing EDS or HSD. To my knowledge, we do not yet have a cure. So if someone is talking about cure and/or sounds too good to be true, you just want to be careful about that. A lot of people have very slick sales pitches and the economic side of medicine is pretty tricky. So you want to make sure that you are really paying careful attention to that.
[38:27] You want to look at the initials after the name, and it's a red flag if it's hard to figure out the person's training and background. I've had this happen before where someone has told me, "I went to see Dr. So-and-so," and I ask them, "Well, what's their background?" and they can't tell me what their background is. So sometimes I'll dig around on the website and I can't find their initials after their name, and I can't find what their actual degree is in. Everything's kind of written more vague and a little bit shadowy maybe.
[39:05] I do want to refer you to a really excellent article on Substack by Dr. Courtney Gensimer called "Unraveling the Complex Cycle: Pseudoscience, Stigma, and Healthcare Challenges." She discusses the onslaught of pseudoscience and how this has surged because of patients seeking alternative solutions in the absence of effective medical approaches. So definitely check out that article because there is a lot of pseudoscience out there, and we do need to be really, really wise consumers, and it's important to have an appropriate amount of skepticism.
[39:42] So then this might sound really hopeless, like, "Oh my gosh, forget it, there's nothing I can do." No, that could not be farther from the truth. There's lots of things that you can do, but I want you to know that a lot of doctors don't know about them. There are doctors that do — there are definitely some doctors that do — and there are of course different approaches besides mine, so some doctors might have a different approach that works great and it might be different from mine. But the type of approach that I use and that a lot of my colleagues use and that we kind of collaborate on — not a lot of doctors are using those kinds of techniques. So you just have to be really, really cautious in who you work with.
[40:24] Fortunately, though, you don't need a doctor for a lot of the things that you can do. There's some low-hanging fruit that you can actually do on your own. And these are the kind of things that I discuss in one-on-one sessions when I do coaching-type sessions. I'll give people ideas of things they can do, especially if they tell me, "I don't have a doctor to prescribe any medications for me." So if I'm seeing them in a coaching session and I can't prescribe medications for them either, I will give them all kinds of things that they can do that don't involve prescription medications.
[40:56] But this is also why Dr. Gensimer and I published a two-part series with first author Victoria Daler. These articles are CME journal articles, so they are available for a fee, unfortunately, at this point. They were available free for a while. When people come and see me one-on-one, I usually do share these articles with them because I am allowed to kind of hand them out like that. The title is "Hope for Hypermobility: An Integrative Approach to Treating Hypermobile EDS and HSD," and there's a Part 1 and a Part 2. So figuring out how each person's situation is unique helps you figure out how to do your research and what might be some reasonable things that you can try.
[41:39] That's also why I host this podcast, to give you lots of useful things that you can do on your own without your team as well. There's some things that I share that you need your team for. You also want to use support groups wisely. Sometimes it can end up being a contest of who's the sickest, and so support groups can be problematic sometimes. You want to participate in support groups that are solution-focused and where you can get beneficial information. For example, if you can get feedback about clinicians. Now, one caveat to that — remember there's a saying, no one is for everyone. So no matter how good you are, there's going to be some people who are going to have some negative experiences. So of course it depends on what the details are of those experiences, but just keep that in mind. Support groups can be super, super helpful, and I do think finding out about other clinicians is a good thing to do in a support group.
[42:40] Okay, a couple other quick things on this topic before we move on. The bottom line: volume. Volume is important when you're looking for a healthcare practitioner to help you on your EDS or HSD journey. Low is not always bad, but you're not getting the experience side of that person's journey. So if they are a healthcare practitioner who is earlier on in taking care of people with EDS and HSD, but they're curious and they want to help, maybe they're a great fit for you — but you won't get as much of their personal experience from that side of things.
[43:23] Empathy is very, very important in looking at healthcare practitioners. I think it's less important for surgeons, but it does still matter. For surgeons, of course, you want really, really good surgical skills, but you also want the empathy as well. You want the curiosity. You want to make sure that they are curious enough that they want to learn more about these conditions. Don't worry if they are originally Googling EDS because that's not necessarily a bad thing, especially if they're empathetic and they want to help you. Maybe they're actually going to be able to help you a lot. They just don't know a lot about EDS yet, but if they're willing to learn and they want to help you, maybe that person is actually going to be a great doctor for you.
[44:10] One last thing on this topic before we move on. Remember that you likely have a lot more time and are likely investing a lot more time and effort into your personal situation. Your doctors are taking care of probably thousands of patients and each one has a little bit different situation. So if you go in and you share with them an article that you just read, even if they are an EDS specialist or see a lot of EDS patients and they haven't read that article, try not to judge them too harshly — keep in mind they probably have a lot of other commitments. They have a lot that they need to know about. They have a lot of different types of patients. And so taking hours and hours and hours to devote to a specific topic can be very challenging. So try to be compassionate with them, and they are much more likely to be compassionate with you.
[45:06] Our next question is from Michaela F. Hello. Oh my gosh, I'm so glad I found you. This is actually a question on behalf of my bestie. Her EDS is severe, with POTS and other comorbidities. She has been living with a permanently dislocated shoulder for 12 months, and her good shoulder has been dislocating daily as of 2 weeks ago. Doctors and physios cannot get it back in either, and it has been out since then too. She's at a loss. Google, Reddit, and support groups have absolutely nothing to offer her on permanent dislocations. We've both been trying to find anything or anyone going through or specializing in permanent dislocations. She's had all of the surgeries, including a nerve transplant in the shoulder that has been out for 12 months. These aren't her only issues. She's also had several jaw surgeries, hips, knees, daily dislocations of ribs and fingers, etc., and she has a bulging C7 disc. I don't even know what the question is beyond: is there anyone out there who has experience on this or where to go next? We need help. Love from a gal who just wants to take all of her bestie's pain away.
[46:15] So I wanted to share this question because this is the kind of person who would benefit so much from meeting one-on-one and taking a deep dive, because lots of times when we actually have a chance to talk one-on-one, we can figure out what are the core issues, what are the issues that are driving all of the other issues, because we want to avoid playing whack-a-mole. Oftentimes we end up dealing with this one thing and then dealing with this other thing, and we don't get to the core issue. So that's why all of those other problems keep happening. So anyone who has a really complicated story like this — I always take a really detailed history and try to figure out what are the biggest problems that are driving everything else.
[47:03] So thank you so much, Michaela, for sending in this question. I wish I had a simple answer for you, but no surprise, I don't have a simple answer. Without seeing any imaging or hearing details, actually seeing the notes and things like that, what kind of surgeries — it's really, really hard to comment. But I did want to thank you so much for sending in your question, and how lucky is your bestie that she has someone like you in her corner?
[47:30] This is probably the last question that we're going to address today. Oh, actually 2, because one of these is quite quick. Someone wanted to know about how the documentary was going. So you may or may not have heard that I am a co-producer on a documentary about the MCAS triad. So that is MCAS, EDS or HSD, and dysautonomia, which most of the time is POTS. So we are working on a nonprofit documentary, and our nonprofit sponsor is LDN Research Trust. I first want to say this is not an LDN movie, so anyone who had that concern, that is definitely not the case. They are just our nonprofit sponsor so that we can take donations for covering our costs. I also wanted to point out that all of the producers are donating their time, and we are also all donating money to the project.
[48:27] As far as an update, all of the video has been recorded. So a lot of people have been sending in their stories. They've asked if they could be recorded for the film. We do at this point have all of the footage that we need, and we are working on editing. We do need more funds, though, to complete the editing and also in order to promote the film. We want the film to reach as many doctors' hands as possible and really get out into the community because we will be offering educational resources at the end of the movie — like short lectures that the doctors can watch, or other people too — that will give them tools that they can actually use the next day in their clinic to help them identify people with mast cell activation syndrome, POTS, EDS, and help them just be more aware of what these conditions are and that they're more prevalent than most people realize. If you visit mcasfund.org — that's mcasfund.org — you can help support this important nonprofit documentary.
Okay, on to the other question. Why do some clinics refuse to see me when they haven't even evaluated me yet? So the first thing is, hopefully the clinic is making sure that you're a good fit and that they have something to offer you. They don't want to waste their time, they don't want to waste your time. So hopefully that's the reason why they're asking the screening questions and they're assessing whether or not they'll see you. Because once they do see you, even just once, as soon as they see you once, you've established the doctor-patient relationship, and now they have a certain responsibility to you.
[50:07] Unless it's an emergency, most of the time they're not under obligation to see you. So if you go to the emergency room and you have a problem, they're obligated to see you, and sometimes they call in a specialist, and that specialist who's on call is obligated to see you. But otherwise, if you're a rheumatologist in a routine practice, it's very, very possible — because I think nowadays people are just getting inundated with requests — you might be getting 1,000 requests for every 1 patient that you can see. So you train your office staff to be able to ask the right questions to identify which patients should be seen and which patients are not a good fit.
[50:47] And of course, a lot of people are experiencing that in the case of genetics. A lot of people really, really want to get in to see a geneticist, and I'm not saying that you shouldn't, because yes, seeing a geneticist would be great, but the demand for geneticists far exceeds the supply. So a lot of people are on like a 5-year waiting list to see a geneticist. In the meantime, there's lots of things that you could be working on, and also be aware that lots of other doctors can do genetic testing. So you can very possibly see another type of doctor who can do an assessment, and if they decide that genetic testing is indicated, then they can order that for you. That's a question you can ask of the clinic beforehand: does this doctor sometimes order genetic testing? In that same episode I mentioned before with Dr. Hakim, he discussed when he does genetic testing and gave some very, very specific indicators that he uses.
[51:51] The last thing I want to say about clinics and not seeing you is, sometimes people do get fired from a clinic. That can happen for a wide variety of reasons. I have personally seen a lot of patients who have been fired from other clinics in the past. If that does happen, usually they do need to provide you with emergency care, and I think it's around 30 days, although the laws are constantly changing, so don't quote me on that. But if you have an emergency come up, they still need to help you if it's within, I think, about a 30-day period.
[52:22] But definitely ask them why. Ask them why you were fired and try to get a copy of the records and see what did they write in the records. If you see inaccuracies, highlight those inaccuracies. Make it as easy as possible for them to know what it is that you dispute in the record and try to get those inaccuracies changed. If you are not able to get those inaccuracies changed, at least try to get documentation in the record of how you see things from your perspective.
[52:56] So I'm thinking of one patient that I had where the patient had vitamin D toxicity. They were taking so much vitamin D and their level became really, really toxic. And I'm sure there was so much more to the story, but the mom and the daughter were apparently fired from this clinic when they were reporting these symptoms and trying to get another vitamin D level done. And again, I'm hearing the story just from the mom and the daughter. But when that happens, sometimes there are other ramifications, like things can be documented system-wide. So you definitely want to find out why you were fired and what exactly shows up in the chart. And you can often work through that with somebody on the office staff.
[53:37] I would like to close with a hypermobility hack. The hypermobility hack I want to share with you is in relating your symptoms to your doctor. I want you to describe your symptoms and avoid the temptation to label your symptoms. When you label your symptoms, that can lead the doctor down the wrong path and actually lead to misdiagnosis. It is okay to eventually say, "I'm really worried about XYZ," but don't lead with that. Lead with the most objective reporting that you possibly can. Pretend like a reporter's coming in and you're trying to tell a story that's going to go in the newspaper, and they want it to be as factual as possible. So you don't want to say, "I'm having low-pressure headaches," or "I have this spine problem." You want to say, "I'm experiencing pain, and it's located here. I'm experiencing this problem with my vision." Again, be as specific as possible. "I'm seeing double vision." "I'm seeing floaters," or whatever it might be. Be specific but succinct.
[54:45] Very, very important. I'm seeing this more and more as people are seeing more and more different types of specialists. Then they might come back to me and they're reporting these symptoms in a way that — I'm just trying to figure out, get to the bottom of it — but they're labeling their symptoms as these high-pressure things, these low-pressure things. So make it easier to communicate with your doctor by grouping your symptoms by category. So you can have like your neurologic or, you know, head, neck, chest. Figure out a way to group your symptoms and then report them as factually as possible and even put them like in bullet points. And then you can add in a little bit of detail, but keep it as few words as possible. So you could say, the headache is here — so that'd be a frontal headache, headache at the front of my head, sharp, stabbing, increases when I am sitting up, feels better when I'm laying down. Again, keep it nice and succinct but very, very specific.
[55:48] All right, well, that wraps up this episode of the Bendy Bodies Podcast. Thank you so much for joining me, and I hope you found this episode helpful and informative. Please help spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This helps raise awareness about these complex conditions. If you'd like to meet with me one-on-one, check out the available options on the services page on my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn @hypermobilitymd. You can find Human Content, my producing team, @humancontentpods on TikTok and Instagram. You can also find full video episodes up each week at Bendy Bodies Podcast on YouTube. To learn about the Bendy Bodies program disclaimer and ethics policy, submission verification and licensing terms, and HIPAA release terms, or to reach out with any questions, please visit bendybodiespodcast.com. Bendy Bodies Podcast is a Human Content production. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.