Addressing Pain in Hypermobility Disorders with Linda Bluestein, M.D.

[00:35] Jennifer Milner: Hello and welcome to Bendy Bodies with the Hypermobility MD, where we empower hypermobile dancers and athletes through education and community. This is Jennifer Milner here today with my co-host, Dr. Linda Bluestein. Before we dive into our conversation, we would like to remind you about how you can help us help you. First, subscribe to the Bendy Bodies Podcast and leave us a review. This is helpful for raising awareness about hypermobility and associated disorders. Second, share the Bendy Bodies Podcast with your friends, family, and providers. We really appreciate you helping us grow our audience in order to make a meaningful difference. This podcast is for you.
[01:16] Today I am chatting with the Hypermobility MD, Linda Bluestein. She's a former ballet dancer and integrative pain medicine physician. She specializes in treating dancers and others with hypermobility disorders and other conditions involving persistent pain. In addition to her private practice, Hypermobility MD, Dr. Bluestein is the founder and co-host of this podcast, Bendy Bodies with the Hypermobility MD, and was the former co-host as well as co-founder of Hypermobility Happy Hour. Linda is the director of education for the nonprofit EDS Wellness Incorporated. She's published a number of original research papers, presents work at national and international conferences, and is a contributing author for the book Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.
[02:09] Dr. Bluestein is a member of the International Consortium on EDS and HSD Allergy and Immunology Working Group, IADAMS Promotion Committee, Board of Directors, Bridge Dance Project, and the Resources Committee for the Dance Healthy Alliance of Canada. Dr. Bluestein, today we're chatting about pain and hypermobility, something most people don't associate with hypermobility. So why are we having this conversation?

[02:47] Dr. Linda Bluestein: Are hypermobility disorders painful? Yes, they are. And it is an important conversation because a lot of patients get dismissed because their providers don't recognize that these conditions are painful. Their families don't recognize that these conditions are painful, or other people that are supporting them. EDS, Ehlers-Danlos syndromes, and HSD, hypermobility spectrum disorders, are amongst the most painful disorders that we actually treat in medicine. They can be extremely painful, and the pain can be a lifelong thing. Now, that doesn't mean we don't have solutions for it or ways that we can improve quality of life, but pain is extremely common in these conditions.
[03:32] When we've done studies looking at how frequently people note pain as one of the symptoms amongst people with hypermobile Ehlers-Danlos syndrome, we know that there's like 90-plus percent of people who do complain of chronic pain. So it can come from a variety of different places. It can be a lifelong thing, but this is definitely something that is a significant problem.
[03:56] People with these conditions can have multiple different types of pain. They can have what's called nociceptive pain, they can have neuropathic pain, and they can have centrally mediated pain. And so it can make it hard to treat the pain. Also, mast cell activation syndrome can contribute to the pain because mast cells and the nerve endings lie very, very close to each other. Mast cells are one of the first responders of the immune system. So when mast cells degranulate — when they get activated and they degranulate — those chemicals can act on the nerve endings and increase pain. We know that this is one of the contributing factors also to complex regional pain syndrome, which occurs more commonly in people with EDS and related disorders. So we know that mast cell activation syndrome is also an inflammatory condition, and we know that inflammation is a common problem with pain.

[04:56] Jennifer Milner: So I want to make sure I understood you correctly. You're saying that 90% of people with hypermobile EDS say that they have some sort of chronic pain?

[05:07] Dr. Linda Bluestein: Yes. So 90% of people with hypermobile EDS experience some sort of chronic pain.

[05:12] Jennifer Milner: I just want people to understand that because when we talk about hypermobile EDS, and even when we talk about the comorbidities that go with it, we're not usually talking about living with a low level of constant pain. That's not something that generally comes up first in the conversation, right? And yet 90% — that's huge. That's overwhelming. So it's really important that people see that that is not only common but extremely common. And so it is 100% normal if they're feeling that, and something that they can talk about.

[05:45] Dr. Linda Bluestein: Right. And I say 90-plus percent. Some of the studies show 90%, some others show 95%, and in some it's 100%. Now, these are people that already have the diagnosis of hypermobile EDS. But we know that this is an extremely common problem, and it is often the presenting symptom. And we know that pain — once a person has one pain problem, unfortunately, they are more likely to have another pain problem. So one of the ways that we can address chronic pain is by addressing someone's pain much, much earlier in the process rather than waiting until they have chronic pain in multiple parts of their body. So we can really do a lot if we can be more proactive and more preventative and really take this very, very seriously.

[06:38] Jennifer Milner: So that to me is so helpful for someone walking around with EDS to be able to say, I've got a little pain today, and also I have EDS. They can say, I have some pain today. That is probably part of my EDS. Let's bring that up and let's bring that into the conversation sooner rather than later.

[06:59] Dr. Linda Bluestein: Definitely. And I do want to mention while we're talking about EDS that whether you have EDS, Ehlers-Danlos syndrome, or HSD, hypermobility spectrum disorder, they can be equally serious. In fact, someone can have HSD and have more pain than someone who has EDS. I feel like once the 2017 criteria came out and a lot of people have been reclassified as having HSD because they no longer meet the more strict criteria for hypermobile EDS, a lot of people are very upset, and a lot of their healthcare practitioners, I think, are not taking this as seriously as they need to. HSD can be just as painful. HSD can be just as disabling as EDS. So we need to validate these people's experience regardless of which label they have, because these conditions can affect every single aspect of a person's life.

[07:58] Jennifer Milner: Well, one of the things we talk about when we talk about HSD or EDS is how each person with a diagnosis experiences things differently. There's no clear cookie cutter, right? So having said that, but also acknowledging that pain is a very big part of it, what factors might influence how much pain a person would experience?

[08:19] Dr. Linda Bluestein: So one of the things that I think is not discussed often enough is the genetic factors that go into how much pain a person experiences. We know that there are huge genetic differences, and some people can have significant amounts of damage in their body — they can have all kinds of tissue damage going on — yet they experience very little pain. And other people can feel every cell that is just slightly out of alignment. And most people who have EDS, or at least those that are diagnosed with EDS, fall into that latter category, unfortunately.
[08:59] We know that genetic differences can also contribute to differences in levels of inflammation. So a person could be genetically predisposed towards having more pain. A person can be genetically predisposed towards having more inflammation. And in some of my patients, when I have done this kind of genetic testing — what's called single nucleotide polymorphism, or SNP testing — and they get the results back and they see, oh, I have this variance or that variance. When they get those results back and they see it on paper, it's very validating. It really makes them realize, this is something that I need to cope with. This is something that I need to figure out how to deal with. But they don't feel as guilty, I think, as they did going into it. Why can I not get this under better control? Why am I still experiencing so much pain? I know other people are walking around without so much pain. Why am I having so much pain? Then they find out about these genetic differences and they say, oh, well, this is definitely part of the picture. So I think that's one really important thing that we just don't see discussed very often.
[10:14] Some of the other things that make a difference are prior experiences. So if you've had pain in the past, especially poorly controlled pain, it's more likely that you're going to have pain in the future. We know that the brain and the nervous system become more sensitive to pain once there's been other pain experiences. And so it's really important, if you have an injury, to address it immediately, take good care of it, try to get good pain control, because we know that there's the saying, pain begets pain. And it really is true. Once you have one chronic pain problem, you're more likely to get another one. So we really want to get a handle on things sooner rather than later.
[10:52] We also know that coping makes a huge difference. And I'm sure you've seen this with some of your dancers. So maybe a performance is coming up, and they feel capable of still performing even though they have an injury that they've kind of been working through and they're having some pain. They feel like they can cope. They have a certain level of pain, but once it exceeds their level of coping, they feel like they can't cope with it. All of a sudden their pain just becomes much, much greater. And this is true for all of us — whether we are dancers with a performance coming up or anyone else — if we are experiencing something else in our life that we feel like we can't cope with, we will experience more pain because we have less ability to cope with that pain.
[11:42] We know that different regions of the brain will process the pain and amplify it sometimes and dampen it other times. We know that people who have fibromyalgia, which is the classic central sensitization syndrome, actually have decreased connectivity in the parts of the brain that dampen pain signals, and they have increased connectivity in parts of the brain that amplify pain signals. So these are some factors that I think are just really not thought about.
[12:22] Another thing that I think really isn't thought about enough is that stress increases pain regardless of the source of the pain. I think sometimes people think that there are two types of pain: real pain and not real pain. It's all real. All pain is real — especially if you have EDS, HSD, or Marfan syndrome or one of these other hypermobility conditions or connective tissue disorders. Pain is a real part of your life. Pain is always a subjective experience and is in the eye of the beholder. Stress will always make that pain more significant regardless of where the pain is coming from. And I think that's a common misconception — that if the stress makes the pain worse, then it's all in their head. The family might think that, the providers might think that, and that's simply not the case.
[13:21] Another thing that affects how much pain a person feels is mood. So whether a person has anxiety or depression, or whether they're experiencing fear, which increases suffering — regardless of what's causing the pain, if you have problems with your mood, that also increases pain. You and I did an interview with Dr. Bonnie Robson, and she provided some really excellent strategies for people to develop psychological skills to deal with stress. And this is really super important. We also recently interviewed Dr. Beth Darnall, and she does a lot of really fantastic work in the space of psychological treatment for pain. So this has to go hand in hand because all of these things are closely related.
[14:04] Another thing that I think people don't always appreciate is things like nutrient deficiencies. These are very, very common with persistent pain and can definitely be a significant factor. So you and I interviewed Kristin Koskinen a couple of times, and I would also strongly recommend that people listen to those episodes.

[14:26] Jennifer Milner: Yeah, that's great. Because a lot of times people think, I'm experiencing pain in my ankle. I didn't twist it. I don't know why I'm having pain. It must not be real, right? And then ignore it. And as you said, it's so important to address pain early in the process. And so to acknowledge that and try to bring that into the conversation early is really, really important. So talking about missing things, missing those little signals that come up, what are some of the frequently missed contributors to chronic pain?

[14:59] Dr. Linda Bluestein: So I think that hypermobility is probably the biggest missed contributor to chronic pain. I would love for — I know there are physicians that listen to this podcast, and I am hoping that there are ones listening right now — I would beg you to please, any time someone comes into your office, it doesn't matter if you are a urologist, an orthopedic surgeon, if you are a primary care provider, if you are a dermatologist, no matter what kind of practitioner you are, if you have somebody coming into your office that is complaining of some type of pain — you could be a gastroenterologist and they're complaining of abdominal pain — any type of pain complaint, I would really like for everyone to be thinking, could hypermobility be a contributing factor here?
[15:48] And it doesn't even need to be like they're hypermobile now, but were they in the past? We've talked before about the 5-point questionnaire because that is a quick and dirty way for people to identify joint hypermobility. It's just 5 simple questions that ask things from a historical perspective as well as what's going on currently. And so I would love for all providers to ask those questions when the person is coming in for an evaluation, especially if they haven't been able to get to the bottom of it — if they haven't been able to figure out what's causing pain in this person — then I think it's especially important to think about, could this be a contributing factor? Because we know that when you consider the entire basket of hypermobility disorders, they're not rare. Some of the subtypes of EDS are ultra, ultra rare. But when you consider all of the different conditions that are related to hypermobility, they're not rare. So we want to make sure that we are looking for these, that we are finding these, and that we are addressing their contribution to this person's pain problem.
[16:58] Another really important contributor to chronic pain is — we just talked about mood, but also sleep. And I like to think of these as occurring like points of a triangle: pain, sleep, and mood. And as we know with a triangle, there are lines that connect the points. So all of these are connected and they impact each other. So if someone has a bad night of sleep, they are going to have more pain the next day. It's virtually an automatic thing. And if someone has more pain, they are likely to have worse sleep. So this is where it can really turn into a very challenging catch-22 because they have pain, so then they get bad sleep, which makes them have more pain. The exact same thing happens with mood. If a person has depression or anxiety, that increases their pain. Well, then more pain also increases depression and anxiety, which also increases the pain. So it kind of turns into a vicious cycle. And the pain, mood, and sleep are all connected to each other. So those are another really important component to be considering.
[18:10] And then the last one I want to mention is neuroplasticity, and that is the ability of the brain to change over time. We used to think that the brain changed a lot in childhood, but basically after childhood we thought that the brain stayed static. And now we know that that's simply not the case. We know that the brain changes quite significantly. Every thought we have, every action we take strengthens the connections in our brain. So if we focus on the pain and keep thinking about the pain, that's going to strengthen those connections. If instead we are able to start working on solutions and start looking towards things that will help lessen our pain, that will help reinforce positivity and having that resource — being able to address inflammation, for example. That's a really common approach that I take in treating my patients: looking at inflammation and how much it could be contributing to someone's pain. I like to really approach things from that direction so that we're not continuing to focus so much on the pain, so that we're trying to make these other positive pathways — we're trying to reinforce those.

[19:22] Jennifer Milner: That makes a lot of sense. So trying to reinforce the positive pathways rather than the negative pathways, just sort of shifting where our gaze is focused. That makes sense. So what are sort of the most common myths or misunderstandings about chronic pain?

[19:49] Dr. Linda Bluestein: I would say the most common one is that chronic pain is just acute pain but longer. We know that chronic pain, depending on the source that you look at — it used to be considered pain that was present for 6 months or longer, and now a lot of the definitions have changed to more like 3 months. But regardless of which definition you use, we know that the brain actually undergoes changes with chronic pain. What ends up happening is people think, why hasn't anything fixed my pain yet? Because they're looking for one thing to fix their pain. And maybe early on, if the pain had been properly diagnosed and the source addressed right away and treated, then the pain would have been completely resolved — maybe with one more simple strategy. But instead, as the pain is present for longer and longer, it kind of becomes like layers of an onion. Anyone who has peeled layers of an onion knows that you peel off one layer, then you've got the next layer, then you've got the next layer. When you're trying to treat chronic pain, it's kind of like peeling off those layers of the onion. It's not one thing usually that you can do to make the pain better. You need to keep peeling them off and peeling them off until you get to the root of the problem. Because the problem has been going on for so long and the changes have taken place in the brain, it's no longer a simple problem in the tissue.
[21:20] And I think that's where people with EDS and HSD have so much difficulty, because they develop problems in so many different parts of their body and in so many different areas of tissue. So they're getting constant bombardment into the nervous system with pain generators. So it can be very challenging to keep that calmed down and to keep the nervous system from developing inflammation — and that's called neurogenic inflammation. So that's one of the most common myths.
[21:53] Another one is that pain equals damage. So in the early phases and with acute pain, that's usually the case, although as we talked about earlier with genetics, we know that isn't always exactly the way it works. Think, for example, of Drew Brees — he developed some terrible injuries, had all these rib fractures, yet continued to play football. He had all this damage, and obviously he had pain, but yet he didn't have outrageous pain. I used to anesthetize people. They'd come in with literally digits falling off — like a finger cut off and it's hanging by a thread. Are you in any pain? No, none. So even with acute pain, those genetic differences are huge, really, really huge. But with chronic pain, it's even more significant. Pain does not equal damage. There are many, many more factors that go into how much pain we feel.

[22:55] Jennifer Milner: That's really interesting. That also bears repeating what you said earlier about how once it gets to being chronic pain, the thing that's causing the pain isn't the thing that caused the pain originally. Acknowledging that it has shifted to something else and has moved to perhaps a multi-systemic issue — there may have originally been one issue, or there may have originally been a trigger, but by the time it's considered chronic pain, we're not looking to fix just that ankle or deal with that back or whatever it might be and say it'll be fine. Is that correct to say?

[23:40] Dr. Linda Bluestein: Yes, absolutely. And I think this is where people with EDS and HSD have so much difficulty. Because oftentimes the proper diagnosis is not found in the beginning because people are looking for the more common things. So if you go in with ankle pain and they do just plain X-rays, a common misconception is that if the X-ray is normal, then you're fine — you don't have a problem. Well, that only looks at the bones. That doesn't look at the soft tissue — well, it gives you a little bit of information about soft tissue, but not everything. Even an MRI doesn't tell you about everything. And these studies are static and they're done when you're lying down. So it doesn't tell you what's happening when you're moving. It doesn't tell you what's happening when you're upright.
[24:28] So oftentimes people with EDS and HSD are not properly diagnosed when the problem first starts or the pain first starts. And so it isn't until later, when all these layers have built up, that maybe they are getting some more treatment options for their pain, but at the same time, now there are all these confounding variables. So it's harder to actually break those down. And I think a lot of patients want that one thing that's going to fix their pain. While that's totally understandable, it's just usually not realistic. It's more appropriate to think about a combination of things — if this one helps by 10% and that one helps by 20% and another one helps by 5%, eventually that adds up to meaningful improvement.

[25:24] Jennifer Milner: A cumulative effect. So then what is your approach to the person with chronic pain?

[25:29] Dr. Linda Bluestein: The comprehensive care plan is what I am prescribing. So a couple of things. First, we need to identify what is the source or sources of that person's pain. It depends on where they're having pain. I have literally seen 10-year-olds that have pain everywhere. Well, in that case, we really need to address what's going on in the nervous system. If they have one area of pain, then we're going to really zone in on what is going on at the tissue level, what is going on in that joint. Is there subluxation? Is there dislocation? Is there some joint instability and joint malalignment going on there? Is there a tendinopathy that has not been adequately addressed? And so the first thing is we want to identify what the source of the pain is. We may or may not do some additional imaging studies and some additional assessments — I may send them to a physical therapist to get a more detailed movement assessment, or to someone like yourself, a Pilates instructor who is super, super knowledgeable in working with people with hypermobility, who can really get a good assessment of how they're moving and really look for those dysfunctional movement patterns and try to work on those.
[26:52] Then another part of the diagnostic workup is I also usually obtain additional lab work. Part of the challenge with people who have EDS and HSD is that their labs are usually normal, and this is very frustrating for people. And I think a lot of doctors don't understand that it's not that people want there to be something wrong with them, but they want an answer. They want to know why they're suffering. That's one thing that's really, really misunderstood. So sometimes if we dive deeper and we look at hormones and we look at nutrient levels and we look at more detailed inflammatory markers, we can get some additional information, because the routine lab work that we check most often is often normal.
[27:45] So that's the next part that I do. And then I also really work with people on goals and realistic expectations. We want to alleviate suffering and improve quality of life, but I try to inform them that I'm not going to be able to take away your pain 100%, as much as I would love to. And in some cases, we can do that. A lot of the time it's a matter of improving quality of life and improving functional capacity, but there may still be some residual pain. But instead of having pain brain — like your brain is on fire with pain — instead you can enjoy things. You can enjoy your activities. Enjoy being with your family and things that you used to do before you had the pain problem.
[28:30] So I kind of start with that, and then I use an acronym called MENDS-PMM as a way of myself remembering and helping other people to remember the approach that I take. So the first M stands for movement, and that could be working with you as a Pilates instructor, working with a physical therapist, working with a Gyrotonics instructor, working with an occupational therapist. We need to get people moving better before we can get them moving more. So we need to really assess their movement patterns and what are they doing in their day-to-day life, because what they're doing in their day-to-day life can be exacerbating their pain and they don't even know it. They may have some poor posture when they're sitting, some poor posture when they're standing or when they're walking, when they're laying down sleeping. So we want to work on those types of movement patterns.
[29:30] The second thing is education. It's extremely important that people understand how pain processing works and how they can take steps to improve their quality of life, and how they need to take a really super active role in the entire process. We talked a lot with Dr. Beth Darnall about this, and she really has some great programs that she's doing to help empower people. And I've written a couple of articles fairly recently that might be helpful for people as well that talk about things like inflammation and nutrition. One is on the Dance USA website under informational papers, and the other one I wrote for IADAMS International Association of Dance Medicine and Science for the Bulletin for Teachers, and that is on treating inflammation, and that should be published very soon. So people could look at that also. The more informed you are, the better.
[30:28] And there are some very interesting studies that are specific to education that have been done. One study took patients that came into the emergency room after getting whiplash injuries, and half of the people just received the normal standard routine care, and the other half received some very detailed education with them. They explained that this pain is not going to go away immediately, it's going to take time, and really did very detailed education with them. The people who had the detailed education ended up having less follow-up imaging, fewer doctor's visits, and rated their pain lower than the people who had just the usual standard of care.
[31:15] Another super interesting study relating to this — they took people that had MRIs of their back, and in one half they just gave them the usual report, and in the other half, at the end of the report, they said, these changes are consistent with the patient's age, or are normal for the patient's age, something like that. They found that in the second group, those patients had again less follow-up imaging and spent less money on healthcare. So I think educating people is super important. Those are two pretty straightforward studies that help to demonstrate how important it can be and how we can actually save healthcare dollars if we educate people and really inform them about how pain works.

[32:08] Jennifer Milner: Absolutely. Yeah.

[32:10] Dr. Linda Bluestein: And then the N stands for nutrition. Nutrition is extremely important. If we're putting a lot of processed foods in our bodies, if we're putting a lot of preservatives and a lot of sugar in our bodies, we are going to have inflammation. And inflammation is a huge driver of pain. I cannot overstate how important nutrition is. So I strongly, strongly recommend that people listen to the episodes with Kristin because she gives some great advice. And in those papers that I mentioned earlier, I also talk about nutrition quite a bit there as well.
[32:46] And then the first S stands for sleep. We talked about sleep a little bit earlier. Having altered sleep greatly impacts pain. Some of the things more specifically that impact pain are, for example, if someone has an altered circadian sleep pattern. So if they're going to bed at 2 in the morning or 4 in the morning and then sleeping for 4 hours or 6 hours and then napping during the day. And in other cases, they're sleeping for 10 hours or 12 hours and having difficulty getting out of bed. We get much better sleep if we can get to bed around 10 PM — ideally no later than 10 PM. The circadian rhythm is extremely important. All of our body is wired to the circadian rhythm, and our cells are really driven by the circadian rhythm. So it's really important that we try to get to sleep at the same time every night and wake up at the same time every morning. It's really important that we try to get exposure to sunlight as early as possible in the day because that also helps to set the circadian cycle. Our ancestors didn't have electronics and the ability to have lights on at all hours of the night and be on our phones. So we really have to factor in the impact that our electronic devices have.
[34:15] So we want to set a really good relaxing bedtime routine. We want to prepare the brain for sleep, and we want to really work on relaxation practices during the day so that at night we can relax and fall asleep, because relaxation is a precursor to falling asleep. And if we can't relax during the day, then we're going to have a hard time relaxing at night. It's very normal to wake up multiple times at night. If we are able to relax and fall back to sleep, we don't even realize that we woke up. But if we're not able to do that, then we're aware that we woke up and have more problems falling back to sleep.
[34:55] So sleep is extremely important. There are lots of things that I do when working with patients. Sometimes it involves supplements, sometimes it involves wearing things like blue light blocking glasses, although it's better to have your electronics off completely. Ideally, electronics should be put away in a completely different room rather than being next to you in your bedroom. And ideally you use your bedroom only for sleeping and personal intimate activities. Otherwise, you're not doing work in your bedroom. I know that's hard for people right now — some people are working from home when they hadn't before — but that can impair someone's sleep.
[35:47] The next letter is P, and that stands for psychosocial. We already kind of talked about that quite a bit. But one thing that I didn't mention under the psychosocial category is supportive relationships and non-supportive relationships. The psychological factors for chronic pain are very, very significant, and it can be extremely helpful to have a counselor or a psychiatrist to address these with you. I think a lot of times there's a misconception that if you are referred to a counselor, a psychologist, or a psychiatrist, that the person thinks the pain is in your head, and that's absolutely not the case. As I talked about earlier, the pain is always real. It's always a subjective experience, though, and it is always processed up here between your ears. So what happens up there is hugely important. We want to optimize that as best we can.
[36:42] And something I didn't mention earlier that I want to mention now is ACE scores — adverse childhood experiences. These factor tremendously into a person's likelihood for developing chronic pain. So if someone had a lot of difficult things happen in their childhood, whether it be physical abuse, sexual abuse, parents that were getting divorced, medical problems, all kinds of things like that — those people are more likely to have problems with mood disorders when they get older. They're more likely to have problems with things like PTSD and chronic pain. But there are certain treatments that we can do for things like PTSD, and if we don't address those pieces of the puzzle, we're never going to get on top of the pain. So that's extremely important.
[37:32] The next letter is M, which stands for modalities. So modalities could include things like acupuncture or acupressure. It could include things like a TENS unit. And these can be extremely beneficial, again, when a person factors into consideration that this is one thing that we're looking for. Does it provide 10% improvement, 20%, 5%? It's all relative to what is the cost, what are the side effects, what are the risks. If it's low cost and low side effects, then it's worth adding in even if it provides a lower percentage of improvement. If it's higher cost or higher side effects, then we want it to be more beneficial in order to keep it in the comprehensive care program.
And then the last M stands for medications. So there are a lot of different medications that people will think of when they think of treatments for chronic pain, some of which are things like antidepressants. And sometimes they can be helpful, but again, they usually don't solve the person's pain completely. It depends on what all is going on with the person. Are they experiencing depression or not? Are they experiencing anxiety or not? And these medications can be very difficult to stop. Antidepressants — one of the bigger problems with them to me is the withdrawal-type symptoms that people get when they try to stop. And sometimes their doctor doesn't give them enough guidance on how to stop them, so that can be really challenging.
[39:15] One of my favorite medications is low-dose naltrexone, and that's an anti-opioid. And it's anti-inflammatory. It actually also benefits the immune system, and it's also very beneficial for neurogenic inflammation. It acts on glial cells and is what's called a glial cell modulator, to help reduce inflammation in the central nervous system. And it can have very, very beneficial effects. Some people don't experience quite as dramatic effects in their pain level, but they still might experience the beneficial effects on the immune system, which right now are of course super important. And this has to be compounded, so it has to come from a special type of pharmacy that can make its own medications. This is where I would really love to see some real change where these medications be covered by insurance companies, because right now a lot of insurance companies don't cover compounded medications.
[40:21] Other medications that we would use are to control mast cell activation syndrome. Mast cell activation syndrome can contribute to headaches, it can contribute to abdominal pain, it can contribute to joint pain. And so if we get mast cell activation under better control, those types of pain can be improved.
[40:42] The last letter, the S, stands for supplements. Of course we want to get as many of our nutrients from our diet as we possibly can, but for some of our nutrients it's really just not possible to get adequate amounts from our diet. For example, vitamin D. Depending on where we live — I live in Wisconsin, so it's a pretty northern part of the hemisphere, and in the winter it's virtually impossible to make enough vitamin D. Even in the summer, it's pretty hard. So virtually all of my patients are on a vitamin D supplement. Fortunately for vitamin D, we can monitor blood levels, which is very beneficial. For some of the other things that I would often recommend, we're not able to monitor blood levels, but we still know that they provide beneficial effects.
[41:29] A couple of the other ones that I commonly prescribe: magnesium is one, because it can be very, very difficult to get adequate levels of magnesium from the diet. We know that a lot of people with EDS and HSD have inadequate levels of magnesium, and that can contribute to headaches, muscle spasm and muscle pain, poor sleep, mood problems, and chronic pain in general. So magnesium is a super important thing to consider. Vitamin C is another one. That's super important. Most animals can make more vitamin C — they can increase their vitamin C production when they're under stress — but humans cannot. So people who have EDS and HSD, it's like their bodies are kind of under constant stress. Having more vitamin C can be very helpful. And also vitamin C is a precursor to building connective tissue, so we want to make sure that we have definitely sufficient levels of vitamin C in order to build stronger connective tissue.

[42:35] Jennifer Milner: Excellent. So just to kind of sum all of that back up, because I know that that was a lot of information, but you have tried to break it down as easily as possible. So the comprehensive care plan that you've put into place in your practice and that you apply to different people — the acronym is MENDS-PMM, which stands for movement, education, nutrition, sleep, psychosocial, modalities, medications, and supplements.

[43:08] Dr. Linda Bluestein: Yes, you got it.

[43:10] Jennifer Milner: Okay, yay! So people who have hypermobility, how can they get help for themselves, and how can they help spread the word about hypermobility disorders?

[43:24] Dr. Linda Bluestein: So the first thing that I would suggest is that people look for credible sources of information, and also you want to get your information in the right dose. We know that we can all fall down the rabbit hole of the internet these days, and it can be very easy to all of a sudden realize that 3 hours went by and you spent all this time reading about various different things online. And if you keep reading about this person's pain and that person's pain and this person's problem and that person's problem, if they're not focused on solutions, then that can actually increase your stress level and make your pain worse. So you really do want to be solution-focused and make sure that you do connect with other people and make sure that you are getting good resources, but you want to make sure that you are doing it in a healthy way and at the right level.
[44:18] The book that I was a contributing author for, Disjointed, is an excellent, excellent book. And I don't make anything off of the sales, so I'm not saying that just to generate more sales, but it really is a very good book. There are 21 specialist chapters. We all donated our time, and it really is a very, very good book. There are chapters on all different types of particular issues that happen with EDS and HSD. And the really excellent news is that this book is now available in multiple different countries. I believe it's available in every country in hard copy, and it's also available in an electronic format as well. There's a link to all of those options on my website if you visit the In the Media page. And I strongly recommend that people who are caring for patients with hypermobility disorders, people who have a hypermobility disorder, and people who care about someone with a hypermobility disorder get this book because it is a really good resource.
There are also a lot of different organizations that have really, really great webinars, great written resources, great support groups. They're conducting research. In no particular order, I'd like to mention a few of them, and there'll be links in the show notes. The Ehlers-Danlos Society, which is ehlers-danlos.com, has tons of great information. Chronic Pain Partners, also known as EDS Awareness, has fantastic webinars — lots of webinars that are available on YouTube and also accessible through their website. EDS Wellness has tons of great resources and lots of great information on their site. The EDS Society also has a healthcare professionals directory that would be very useful for people to visit. And there's a newer organization called EDS Research Foundation, and I would also encourage people to check that out.
[46:23] Another thing that people can do is try to be a good EDS ambassador, so that when you are talking to other people, when you're talking to your doctor, they might say, oh yeah, I remember that person that came in and had EDS and they were really trying to do the right things to help themselves. They were taking an active role. If I tell a patient, I want you to do A, B, C, D, and they come back to the next visit and they say, well, I didn't do A, B, or C, but let me tell you why — and they have really legitimate reasons why they didn't do it — that's fine. I have no problem with that. But if they just didn't do them, then it's a little bit harder, because I feel like I might be working harder than they are.
[47:15] So being a good EDS ambassador can really, really help — showing that you are taking responsibility, taking ownership of the situation, and doing what you can. Don't be shy to share what your limitations are and what your challenges are and what all it is that you're going through. Maybe you have financial limitations. Maybe something happened in that interim of time that really impacted your ability to carry out the care plan. We understand life happens, but communicate those things to the best that you're able.
And then lastly, I would also suggest that people share these resources with their healthcare professionals, with their friends, with their coworkers, in the appropriate dose. It's better to take a single article that you can highlight certain parts of. I'm a little biased, but I wrote an article in 2017 that talks about pain management in hypermobility disorders — you can access that off of my website. If you copy that article, which is pretty manageable, and just highlight certain parts, then that's much more manageable than taking in a stack of articles to your healthcare professionals. And I know, Jen, you've talked about how you'll give your dancers that single sheet from the EDS Society and suggest that they take it in and say, I think this might apply to me. If we can't talk about it today, can we talk about it next time? That's an excellent approach.

[48:47] Jennifer Milner: That's a fantastic approach. I love that. Yeah. I think it's important when you are approaching healthcare providers to be clear about what you want to talk about and what you want to say before you go in there, and not just have everything that you want to talk about, but figure out what's my angle, what am I going to try to say, and be respectful because these people have been to school and they have studied hard. And the good doctors will acknowledge that they don't have time to study and learn everything. So they are willing to have that conversation with you and to be pointed in a direction to read more. They just can't do it right then. So handing over that sheet, having one article highlighted is so much more effective, and saying, when I come back next time, can we talk about this? Or can I set up a phone consult or a telehealth consult as a follow-up to talk about this, right?
[49:42] I think it's so helpful and it makes them respect you, knowing — as you said — you don't want to feel as the provider like you're doing most of the work. So it makes them feel like you as the patient have put in time and effort into it and are asking them to learn more about it so that they can help you and make the patient better, right?

[50:03] Dr. Linda Bluestein: Yes, you phrased that very, very well. And you're absolutely right. The time that you have for that encounter is precious. So use it very, very wisely. Keep in mind if you start going off on some tangent, you're probably cutting into time that could be spent talking about something different. So really get your thoughts organized in advance. Really think about what you've been struggling with the most, where you think the biggest problems lie. It's helpful to have things written down. You can even hand it to the person who rooms you and say, this is what I want to talk about, these are my concerns. Make 2 copies so you have one and they have one. Make their job easier for them, because I think a lot of people don't realize how hard it is nowadays to practice medicine. There are so many regulations. There are practices where they see 30, 40, 50, 60 patients in a day, and you can't see 60 EDS patients in a day — which is why a lot of us are not able to take insurance. Seeing people with EDS takes a lot of time, so try to use your time in that visit as well as you possibly can, really focusing on the key issues.

[51:27] Jennifer Milner: Yeah. And I will add, for my own personal practice, if I'm going to see a new doctor, I will often write up a one-page summary of my health history and the things that I think are germane, and hand it to the person who rooms me and say, will you give this to the doctor so they can read it before they come in the room? And they can read through that and see, oh, she has this, this, and this. She wants to talk about this. So it kind of helps prepare them. Doctors with new patients — they're not always sure of what questions to ask if you're coming in with something specific. So it's sometimes helpful for you to tell them ahead of time, here are the things that I think might be germane. Obviously they're going to ask their own questions, but I have found it very helpful to give them information ahead of time. They can read it before they walk in the room, and then we can start the conversation, and it kind of just moves a little more efficiently.

[52:21] Dr. Linda Bluestein: Yes, absolutely. That's a brilliant thing to do. It's like, imagine if somebody had to take War and Peace and they had to review that when they're seeing you in the office. That's so incredibly long. But if instead they had the Cliff Notes — basically you are giving that person the Cliff Notes version of you. And I know this can be challenging to do. I came across a really great physician's website where he talked about how to do this, and we can put a link to that in the show notes as well, because it can be challenging to know what do I include, what do I leave out. This physician wrote about this after being a chronic complex patient himself and realized how important it was and how even as a physician it was challenging to sort out what to include. What do you leave off of that single piece of paper, especially when your history is more and more complicated? And of course, over time we acquire more and more imaging studies and labs and whatever. So you have to keep deciding, I'm going to take that off the list and put this on, because we can all only digest so much information.

[53:42] Jennifer Milner: Right. Well, this has been an incredibly interesting conversation on pain and trying to find some constructive ways to approach it and manage it. Is there anything else that you wanted to add?

[53:57] Dr. Linda Bluestein: Gosh, I think we covered a lot of really good things. It's so hard because pain impacts so many aspects of a person's life. I think the one thing that I do want to add is — I'm sure, Jen, you've heard of the elephant, and you know, how do you eat an elephant? One bite at a time. But there's also the elephant where, if each person is feeling a different part of the elephant, one only feels the tail, and another describes a different piece, right?
[54:35] I think people can get really overwhelmed when they have chronic pain, and it's totally understandable. If we just try to keep putting one foot in front of the other and just try to start nibbling away at it and chipping away, and realize that any step in the right direction is progress — we're looking for progress. It's not an overnight thing. You didn't get where you were overnight, so you're not going to get to where you're going overnight. And you're probably not going to be where you were 20 years ago or something like that. But we're looking for improved quality of life, improved function, and that kind of thing.

[55:20] Jennifer Milner: Excellent. And so where can people find you?

[55:24] Dr. Linda Bluestein: The best place is hypermobilitymd.com. Or they can also go to bendybodies.org in order to find all the episodes of our podcast. And I would recommend people look there also. Oh, and I should mention — Hypermobility MD is also where I am on Facebook, Twitter, Instagram, and LinkedIn.

[55:47] Jennifer Milner: Perfect. And I will say that if you as a listener have more questions on pain, we have addressed it with other experts in a few different episodes from Bendy Bodies. So please check out the show notes here or browse through our episodes on your favorite streaming platform, because we do cover it in a variety of different angles, and I think you'll find it very useful. As always, it is wonderful to chat with you. I feel like I could sit and talk — well, we often do sit and talk for hours about all of this stuff because we're both nerds that way. But thank you very much for chatting with us today and sharing your expertise. And you have been listening to Bendy Bodies with the Hypermobility MD as we chat with Dr. Linda Bluestein. Thanks everybody, and we'll see you next time.
[56:34] Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. Please leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. Be sure to subscribe to the Bendy Bodies YouTube channel as well. Thank you for helping us spread the word about hypermobility and associated conditions. Visit our website at www.bendybodies.org for more information.
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[57:20] The thoughts and opinions expressed on this podcast are solely of the co-hosts and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for general education only and does not constitute medical advice. Your own individual situation may vary. Do not make any changes without first seeking your own individual care from your physician. We'll catch you next time on the Bendy Bodies Podcast.