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

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00:00:00 

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 cohost 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 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 hyper mobility disorders and other conditions involving persistent pain.  

00:01:00 

Jennifer Milner 

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 cohost as well as co-founder of hypermobility  happy hour. Linda is the director of education for the nonprofit EDS wellness, Inc. She's published a number of  original research papers, presents work at national and international conferences. As a contributing author for  the book disjointed navigating the diagnosis and management of hypermobile Ehlers-Danlos syndrome and  hypermobility spectrum disorders. Dr. Bluestein is a member of the international consortium on EDS and HSD allergy and immunology working group. IADMS promotion committee, board of directors, bridge dance project,  and the resources committee for the dance healthy Alliance of Canada. 

00:02:05 

Jennifer Milner 

Today we are chatting about pain and hypermobility. Most people don't associate with hypermobility. Why are  we having this conversation? Are hyper-mobility disorders painful?  

00:02:17 

Linda Bluestein 

Yes they are. 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 and 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. Pain is extremely common in these conditions. When we've done studies,  looking at how frequently people note pain is one of the symptoms amongst people with hypermobile Ehlers Danlos syndrome. We know that there's like 90 plus percent, people who do complain of chronic pain. 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.  

00:03:21 

Linda Bluestein 

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. It can make it hard to treat, the  pain and also mast cell activation syndrome can contribute to the pain because mast cells and the nerve endings  

live very close to each other. Mast cells are one of the first responders of the immune system. Mast cells,  degranulate when they get deactivated and they do granulate, 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. We know that mass cell activation  syndrome is also an inflammatory condition, and we know that inflammation is a common problem with pain.  

00:04:21 

Jennifer Milner 

I want to make sure I understood you correctly. You're saying that 90% of people with hypermobile EDS say  that they have some chronic pain. Yes. 90% of people with hypermobile EDS experienced some chronic pain. I  just want people to understand that because when we talk about a hypermobile EDS, and even 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. Yet 90% that's, I mean, that's huge, that's  overwhelming. It's really important that people see that is not only common, but extremely common. It is 100%  normal if they're feeling that and something they can talk about.  

00:05:10 

Linda Bluestein 

Right. Right. So, I say 90 plus percent, some of the studies show 90%, some other show, 95%. And in some it's  a hundred percent. So, 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. We know that pain once a  person has one pain problem, unfortunately they are more likely to have another pain problem. One of the ways  that we can address chronic pain is by addressing someone's pain much earlier in the process, rather than  waiting until they have chronic pain in multiple parts of their body. We can really do a lot if we can be more  proactive and more, and really take this very seriously.  

00:06:03 

Jennifer Milner 

That to me is so helpful for someone walking around with EDS to be able to say, Oh, I've got a little pain today.  And also I have EDS. They can say, Oh, I have some pain today. That is probably part of my EDS. Let's bring  that up. Let's bring that into the conversation sooner rather than later.  

00:06:24 

Linda Bluestein

Definitely. 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 are, 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 cause they no longer meet this 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. We  need to validate these people's experience regardless of which label that they have, because these conditions can  affect every single aspect of a person's life.  

00:07:23 

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?  

00:07:44 

Linda Bluestein 

One of the things that I think is not discussed at all 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 in their body.  Yet they experience very little pain and other people, they can feel, every cell that is just slightly out of  alignment, and most people who have EDS or at least the ones that are diagnosed with EDS fall into that latter  category, unfortunately, and we know that genetic differences can also contribute to differences in levels of  inflammation. A person could be genetically predisposed towards having more pain. A person can be genetically  predisposed towards having more inflammation. In some of my patients, when I have done this kind of genetic  testing, what's called single nucleotide polymorphism or snip testing, and they get the results back and they see,  Oh, I have this abnormality or that, I'm sorry, I shouldn't really call it an abnormality.  

00:08:53 

Linda Bluestein 

It's more variance. What makes me different from you different from someone else. When they get those results  back and they see that actually, 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 oftentimes 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 a part of  the picture. I think that's one really important thing that, we just don't see discussed very often. Some of the  other things that make a difference are prior experiences.  

00:09:43 

Linda Bluestein 

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. So, we know that the brain becomes the brain and the nervous system becomes more sensitive to pain  once there's been other pain experiences. It's really important to, 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. We really want to get a handle on things sooner rather than later. We also know that coping makes a huge difference and I'm  sure you've seen this with some of your dancers. 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, but they feel capable.  

00:10:41 

Linda Bluestein 

So they feel like they can cope. They feel like they're still able to 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. Now all of a sudden their pain just  becomes much greater. 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. 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 that have  fibromyalgia, which is the classic central sensitization syndrome, we know that those people have, they 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.  

00:11:42 

Linda Bluestein 

These are some factors that I think are just really not thought about. Another thing that I think really isn't  thought about enough is that stress increases pain regardless the source of the pain. I think sometimes people  think that there's two types of pain, real pain and not real pain. It's all real, all pain is real. Especially if you have  EDS HSD, Marfan. If, if you have Marfan syndrome at one of these other hypermobility conditions, connective  tissue disorders, then yes, pain is a real part of your life. Probably all pain is real. 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. I think that's a common misconception that if the pain makes the, excuse me, if  the stress makes the pain worse than, Oh, it's all in their head.  

00:12:40 

Linda Bluestein 

The family might think that the providers might think that, and that's simply not the case. Another thing that  affects how much pain a person feels is mood. 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 and 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 Darnell and she does a lot of really fantastic work in the  space of, psychological treatment for pain. This has to go hand in hand because all of these things are closely  related. Another thing that I think people don't always appreciate is things like nutrient deficiencies. These are  very common with persistent pain and can definitely be a significant factor.  

00:13:41 

Linda Bluestein 

You and I interviewed Kristin Koskinen and a couple of times, and I would also strongly recommend that  people listened to those episodes.  

00:13:51 

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. There must not be real. Right. And then ignore it. As you said, it's so important to  address pain early in the process. To acknowledge that and try to bring that into the conversation early is really  important. So I'm talking about missing things. I'm missing those little signals that come up well, what are some  of the frequently missed contributors to chronic pain?  

00:14:24 

Linda Bluestein 

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, a 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 can 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, and it doesn't even need to be like  they're hypermobile now, but were they in the past? And we've talked before about the five point questionnaire,  because that is a quick and dirty way for people to identify joint hypermobility.  

00:15:26 

Linda Bluestein 

It's just five simple questions that asks things from a historical perspective, as well as what's going on currently.  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 hyper-mobility disorders, they're not rare. Some of the subtypes of  EDS are ultra rare, but when you consider all of the different conditions that are related to hypermobility, they're  not rare. We want to make sure that we are looking for these, that we are finding these, that we are addressing their contribution to this person's pain problem. Another really important contributor to chronic pain is we just  talked about mood, but also sleep.  

00:16:30 

Linda Bluestein 

I like to think of these as occurring, like being like points of a triangle - pain, sleep and mood. As we know, with  a triangle there's lines that connect the points. All of these are connected and they impact each other. If someone  has a bad night of sleep, they are going to have more pain in the next day. It's like a virtually an automatic thing.  If someone has more pain, they're likely to have worse sleep. This is where it can really turn into a very  

challenging catch 22 because they have pain. They get bad sleep, which makes them have more pain. That's  something that we definitely need to address. The exact same thing happens with mood. If a person has  depression or anxiety that increases their pain will then more pain also increases depression and anxiety, which  also increases the pain. It kind of turns into a vicious cycle and the pain and mood and sleep all are connected to  each other.  

00:17:30 

Linda Bluestein 

Those are another really important component to be considering. The last one I want to mention is  neuroplasticity. 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 basically stayed static. Now we know 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. If we focus on the pain and keep focusing on the pain and  focusing on the pain, and we 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 that 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 is looking at inflammation and how much could this  be contributing to your pain? And 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.  

00:18:51 

Linda Bluestein 

We're trying to reinforce those.  

00:18:55 

Jennifer Milner 

That makes a lot of sense. Trying to reinforce the positive pathways rather than the negative pathways, just  shifting where our gaze is focused. Right. That makes sense. What are the most common myths or  misunderstandings about chronic pain?  

00:19:14 

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 six months pain that was present for six  months or longer. Now a lot of the definitions have changed to more like three months. Regardless of which  definition that 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? Cause they're looking for one thing to fix their  pain. Maybe early on, if the pain had been properly diagnosed, if the source of the pain had been addressed right  away and treated, then the pain would have been completely resolved. Maybe it could have been resolved with  one more simple, strategy. Instead as the pain is present for longer and longer, it kind of comes like layers of an  onion.  

00:20:12 

Linda Bluestein 

If you think about, you know, anyone who has peeled layers of an onion, you know that, you know, you peel off  one layer, then you've got the next layer. You've got the next layer. When you're trying to treat chronic pain, it's  peeling off those layers of the onion. It's, 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. I think that's where 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. They're getting constant  bombardment into the nervous system with, pain generators.  

00:21:04 

Linda Bluestein 

It can be very challenging to keep that calm down and to keep the nervous system from developing  inflammation. And that's called neurogenic inflammation. I'd say that's, one of the most common myths, another  one is that, pain equals damage. 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. You think, for example,  of, we hear about people who were, they developed some, terrible injury, Drew Brees had all these rib fractures  yet continued to play football. How has that the case he has 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, are you in any pain? No.  

00:22:01 

Linda Bluestein 

None. So even with acute pain. Yeah. It's amazing. Even with acute pain, those genetic differences are huge,  really huge. With chronic pain, it's even more significant pain does not equal damage. There's many more  factors that go into how much pain we feel.  

00:22:24 

Jennifer Milner 

That's really interesting. And, and it 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. Right.  Acknowledging that it is shifted to something else and has moved to perhaps a multi-systemic issue rather than  the thing that originally caught there may have originally been one issue or there may have been originally been  a trigger, but by the time it's considered chronic pain, we're not looking to, Oh, once you fix that ankle or deal  with that back or whatever it might be, it'll be fine. Is that correct to say?  

00:23:11 

Linda Bluestein 

Yes. 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. If you go on with ankle  pain and they do just plain x-rays I think a common misconception is that, if the x-ray is normal, that then you're  fine. You don't have a problem. Well, that only looks at the bones that doesn't look at the soft T. Well, it gives  you of information about soft tissue, but not everything. Even an MRI, doesn't tell you about everything. These  studies are static and they're done, when you're lying down. It doesn't tell you what's happening when you're  moving. It doesn't tell you what's happening when you're upright. Oftentimes people with EDS and HSD, they're  not properly diagnosed when the problem first starts or the pain first starts. It isn't until later when all of these  layers have built up that, maybe they are getting some more treatment options for their pain, but at the same  time, now there's all these confounding variables.  

00:24:19 

Linda Bluestein 

It's harder to actually break those down. I think a lot of people, a lot of patients, they want that one thing that's going to fix their pain and well, on the one hand, that's totally understandable at the same time. It's just usually  not realistic. It's appropriate to think about, a combination of things that are going to, if this one helps by 10%  

and that one helps by 20% and another one helps by 5%, like eventually that adds up to meaningful  improvement,  

00:24:52 

Jennifer Milner 

A cumulative effect. So, so then what then is your approach to the person with chronic pain?  

00:24:59 

Linda Bluestein 

The comprehensive care plan is what I am prescribing. A couple of things, first of all, I like to, first we need to  identify what is the source or sources of that person's pain. So, and it depends on where they're having pain. I  literally had seen, ten-year-olds that have pain everywhere. Well, in that case, we really need to address what's  going on in the nervous system. If it's someone, older or even younger doesn't and the guests in this case, it doesn't really matter. 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? The first thing is we want to identify, what the source of the pain is, and we may or may not do some  additional imaging studies, and some additional assessments with, I may send them to a physical therapist to get  a more detailed movement assessment or to someone like yourself, a Pilates instructor who's super  knowledgeable in working with people with hypermobility that 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.  

00:26:25 

Linda Bluestein 

Another part of the diagnostic part of the workup is I also usually obtain additional lab work. Part of the  challenge with people that have EDS and HSD is that their labs are usually normal. And this is very frustrating  for people. I think a lot of doctors don't that it's not that people want there to be something wrong with them, but  they want answer. They want to know why. Yeah. They want to know why they're suffering. It's, I think there's,  that's one thing that's really misunderstood. No, they don't want something to be wrong with them. 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. That's the next part that I do. I also really work with people on goals and, what are some  realistic expectations? we want to alleviate suffering and improve quality of life, but I try to add, inform them  that, I'm not going to be able to take away your pain a hundred percent as much as I would love to.  

00:27:37 

Linda Bluestein 

In some cases, we can do that. A lot of the times 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 like pain brain, like your  pants on your brain is on fire with pain. Instead, you can enjoy things. You can enjoy your activities, you can  enjoy being with your family and things that you used to do before you had the pain problem. So, so I kind of  start with that. I started an acronym, right? I use an acronym called MENSPMMS as a way of myself,  remembering and helping other people to remember the approach that I take. So the first M stands for  movement. That could be, like I said, working with you as a Pilates instructor, working with a physical therapist,  working with a Gyrotonic instructor, working with an occupational therapist, we need to get people moving  better before we can get them moving more.  

00:28:43 

Linda Bluestein 

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 pasture when they're sitting. They may have some poor posture when they're standing or when  they're walking, when they're laying down sleeping, for example. We want to work on those type of movement  patterns. So that's the first thing. 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. I know we talked a lot with, Dr. Beth Darnell about this, and  she really has some great programs that she's doing to help empower people.  

00:29:37 

Linda Bluestein 

I've written a couple of articles fairly recently, that might be helpful for people as well. That talk about things  like inflammation, nutrition. One is on the dance USA website, informational papers. The other one I wrote for I  Adams, 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 can look at that. Also, the more  informed you are the better, and there are some very interesting studies that are specific to education that have  been done. One study, they took patients that came into the emergency room after getting whiplash injuries and  half of the people, they just did the normal standard routine care. The other half, they did some very detailed  education with them. They explained to them that this pain is not going to go away immediately. It's going to  take time and, this is more what you can expect.  

00:30:36 

Linda Bluestein 

They really did some very, detailed education with them. People who have the detailed education ended up having less follow-up imaging, less doctor's visits and rated their pain lower than the people who had just the  usual standard of care. Another super interesting study relating to this is, excuse me, they took people that had  MRIs of their back. In one half they just gave them the usual report. 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 where they said these changes are consistent with the patient's age, those  patients had, again, less follow-up imaging, less, they spent less money on healthcare. I think educating people  is super important. I think those are two just, pretty straightforward studies that helped 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.  

00:31:47 

Linda Bluestein 

Absolutely. Yeah. And then the N stands for nutrition. Nutrition is extremely important. I know we talked about  that earlier, but 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're going to have inflammation and inflammation is a huge driver of pain. I can't,  

I cannot overstate how important nutrition is. I strongly recommend that people listen to the episodes with  Kristin because she gives some great advice. In those papers that I mentioned earlier, I also talk about nutrition  quite a bit there as well. The first S stands for sleep. We talked about sleep 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. If they're going to bed at two in the morning or four in the morning, and then, sleeping  for, in some cases, they're sleeping for four hours or six hours, and then napping during the day.  

00:32:54 

Linda Bluestein 

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 10:00 PM. Ideally no later than 10:00 PM, the circadian rhythm is extremely  important. All of our body is actually wired to the circadian rhythm and our cells are really driven by the  circadian rhythm. It's really important that we try to get to sleep at the same time every night. We try to 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 their circadian cycle. And, our ancestors didn't have electronics and the  ability to have lights on at all hours of the night and beyond our phones, et cetera. We really have to factor into  consideration the impact that our electronic devices have and, the ability to have electricity and things like that.  

00:33:54 

Linda Bluestein 

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. That at night we can relax and fall asleep because relaxation  is a precursor to falling asleep. 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. So sleep is extremely important. There's lots of things that I do when I'm  working with patients. You know, sometimes it involves supplements. Sometimes it involves, wearing things  like those blue light blocking glasses, although it's better to have your electronics off completely.  

00:34:52 

Linda Bluestein 

Ideally electronics should be like put away in a completely different room rather than being like next to you in  your bedroom. Ideally you use your bed or excuse me, your bedroom, only for sleeping and, personal type,  intimate activities. But, but otherwise, you don't, ideally 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. Maybe they are doing  more things in their bedroom than they used to, but that can impair someone's sleep. The next letter is P and that  stands for psychosocial. We already kind of talked about that quite a bit. The other 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 significant, and it can be extremely helpful to have a counselor or a psychiatrist  to address these with you.  

00:35:52 

Linda Bluestein 

I think a lot of times there's a misconception that if you are referred to a counselor, referred to a psychologist,  referred to a psychiatrist, that the person thinks that 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 always is  processed up here between your ears. What happens up there is hugely important. We want to optimize that as  best we can and something I didn't mention earlier that I want to mention now is a scores. Adverse childhood  experiences, these factor tremendously in a person's likelihood for developing chronic pain. If someone had a lot  of bad 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.  

00:36:55 

Linda Bluestein 

When they get older, they're more likely to have problems with things like PTSD, chronic pain, et cetera, but  there are certain treatments that we can do for things like PTSD. 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. The next letter is M which stands for  modalities. 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%, and 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's  a lower percentage, if it's higher cost or higher side effects, then of course, we want it to be more beneficial in  order to keep it in a comprehensive care program that we're looking for.  

00:38:02 

Linda Bluestein 

The M stands for medications, the next dam. This is the third M out of three. There's 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 to me that  one of the bigger problems with them is the withdrawal type symptoms that people get when they try to stop.  Sometimes their doctor doesn't give them enough guidance and how to stop them. So that can be really  challenging. One of my favorite medications is low dose naltrexone, and that's anti opioid and it's, anti inflammatory, it actually also benefits the immune system.  

00:39:04 

Linda Bluestein 

It's also very beneficial for a neurogenic inflammation. It acts on glial cells and is what's called a glial cell  modulator again, to help reduce inflammation in the central nervous system. It can have 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. It has to compromise special type of pharmacy that can make its own medications. This is where I  really, would 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.  

00:39:58 

Linda Bluestein 

Those are some of the medications that we want to use. Other medications that we would use are to control mass  cell activation syndrome. Mass cell activation syndrome can contribute to headaches. It can contribute to  abdominal pain, it can contribute to joint pain. If we get mass cell activation under better control, those types of  pain can be improved.  

00:40:21 

Linda Bluestein 

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, if you live in, like I live in Wisconsin, so it's a pretty  Northern part of the hemisphere. In the winter, it's virtually impossible to make enough vitamin D even in the  summer, it's pretty hard. 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 do provide beneficial effects. A  couple of the other ones that I commonly will prescribe magnesium is one, because it can be very difficult to get  adequate levels of magnesium from the diet. 

00:41:17 

Linda Bluestein 

We know that a lot of people with EDS and HSD have inadequate levels of magnesium and that can contribute  to headaches. It can contribute to muscle spasm and muscle pain that can contribute to poor sleep. It can  contribute to mood problems and chronic pain just in general. Magnesium is a super important thing too, 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 can not. 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 as a precursor to building connective tissue. We want to make sure that we have definitely sufficient  levels of vitamin D in order to build stronger connective tissue.  

00:42:14 

Jennifer Milner 

Excellent. Just to kind of sum all of that back up, because I know that was a lot of information, but you have  tried to break it down as easily as possible. The comprehensive care plan that you try that you've put into place,  in your practice and that you apply a lot to different people. The acronym is MENSPMMS, and that stands  for movement, education, nutrition, sleep, psychosocial modalities, medications, and supplements. Yes,  you got it. Okay. Yay. So, so people who have hypermobility, how can they get help for themselves and how  can they help spread the word about hyper-mobility disorders? 

00:43:03 

Linda Bluestein 

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. It can be very easy to all of a sudden realize that like three hours went by and you spent all this time  reading about various different things online. 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. 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.  

00:43:58 

Linda Bluestein 

The book that I was a contributing author for disjointed is an excellent book. I don't make anything off of this  sale. I'm not saying that just to, generate more sales, but it really is a very good book. There's 21 specialist  chapters. We all donated our time, all of us. It really is a very good book. There's chapters on all different types  of particular issues that happen with EDS and HSD. The really excellent news is that this is now available in  multiple different countries. I believe it's available in every country in hard copy. It's also available in a non  electronic format as well. There's a link to, all of those options on my website. If you visit the, in the media  page. I strongly recommend that people who are caring for patients with hyper-mobility disorders, people have a  hyper-mobility disorder. People who care about someone with a hyper-mobility disorder, that they get this book,  because it is a really good resource.  

00:45:02 

Linda Bluestein 

There's also a lot of different organizations that have really great webinars. They'll have great, you know,  written resources. They have great support groups, they're conducting research. In no particular order, I'd like to  mention a few of them, which there'll be links in the show notes to this. But, the Ehlers-Danlos society, which is  Ehlers-danlos.com has tons of great information, chronic pain partners, which has also, AKA EDU yes,  awareness. They have fantastic webinars, lots and lots of webinars that are available on YouTube and also  accessible through their website on EDS. Wellness has tons of great resources, lots of great information on their  site. The EDS society also has health care professionals directory that would be very useful for people to visit.  There's a newer organization called EDS research foundation. I would also encourage people to check that out.  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, that they might say, Oh yeah, I remember that person that came in  and had EDS.  

00:46:16 

Linda BluesteinAnd, they were really trying to do the right things to help themselves. They were, taking an active role. If you  come back to an appointment and I like in my case, okay, I'll talk specifically about me. If I, if I tell a patient, I  want you to do ABCD 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. They have really legitimate reasons why they didn't do it. That's fine. I have no problem with that.  If they just didn't do them, then that's, it's harder because I feel like I might be working harder than. Being a  good EDS ambassador, I think can really help showing that you really are taking responsibility, taking  ownership of the situation and doing what you can, and don't be shy to share what your limitations are and what  your challenges are.  

00:47:10 

Linda Bluestein 

What all it is that you're going through. Maybe you have financial limitations. Maybe you have, something  happened in that interim of time that really impacted your ability to carry out that person's care plan. We  understand life happens, but communicate those things to the best that you're. I would also lastly, 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 course I'm a little  biased, but I wrote an article in 2017 that talks about pain management in hyper-mobility disorders. Again, you  can access that off of my website, but if you copy that article, which is pretty manageable and just highlight  certain parts, then that's much more manageable than taking a stack of articles to your health care professionals.  I know Jen, you've talked about that.  

00:48:11 

Linda Bluestein 

You'll give to your dancers like that single sheet from the EDS society. You'll, you'll suggest that they take that  in and say, can we talk about this? I think this might apply to me if we can't talk about it today, can we talk  about it next time? Like that's an excellent approach. That's a fantastic approach. I love that.  

00:48:30 

Jennifer Milner 

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. 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. Handing over that sheet, like you said, having one article  highlighted, is so much more effective in 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 for us to talk about this.  

00:49:21 

Jennifer Milner 

Right. I think it's so helpful. It makes them respect, as you said, you don't want to feel as the provider, like  you're doing most of the work. It makes them feel like you have 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 the patient and make the patient better,  right? Yes. Yes. You've raised that very well. And you're absolutely right. The time that you have for that in  calendar is precious. So, so use it very wisely, keep in mind, if you start going off on some tangent, you're  probably cutting into time that could be spent doing something, talking about something different. Exactly,  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.  

00:50:19 

Jennifer Milner 

You can even hand it to the first, the person who rooms you basically, you can hand it to them and say, this is  what I want to talk about. These are my concerns, make two copies.  

00:50:28 

Linda Bluestein 

You have one and they have one and yeah. 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's so many crazy regulations that we have. There are  practices where they see, 30, 40, 50, 60 patients in a day. And, and you can't see 60 EDS patients in a day, which is why a lot of us, we're not able to take insurance. Seeing people with EDS takes a lot of time. Try to use  your time in that visit as well as you possibly can really focusing on the key issues. Yeah.  

00:51:07 

Jennifer Milner 

Yeah. I will add for myself 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 miss. She wants to talk about this. 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 there with  something specific. 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.  

00:51:54 

Jennifer Milner 

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.  

00:52:00 

Linda Bluestein 

Yes, yes, absolutely. That's, that's a brilliant thing to do. It's like, imagine if somebody had to take Warren piece  to book and write and they had to review that when they're seeing you in the office, like 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. 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? And so this disposition who wrote this after being a chronic complex patient,  realized how important this was and how even as a physician, it was challenging to sort out what to include.  What, what do you leave off of that single piece of paper, especially when, you, if your history is more and more  complicated, and of course over time, we acquire more and more imaging studies and labs and whatever.  

00:53:11 

Linda Bluestein 

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.  

00:53:20 

Jennifer Milner 

Right. Right. Well, this has been an incredibly interesting conversation on and trying to find some constructive  ways to approach it and manage it. There anything else that you wanted to add?  

00:53:36 

Linda Bluestein 

Gosh, I think we covered a lot of, really, a lot of really good things. It's, it's so hard because pain impacts so  many aspects of a person's life that I think the one thing that I do want to add is that rather than, I I'm sure Jen,  you've heard of the, maybe you'll know actually the knee. I know you're so much more red than I am, the  elephant. They talk about like, how do you eat an elephant one bite at a time, but there's also the elephant where,  if each person is feeling the elephant and one only feels the tail and one feels grab a different piece. Right, right.  Describing a different piece. I think people can get really overwhelmed when they have chronic pain. It's totally  understandable if we just try to put, keep putting one foot in front of the other and just try to start nibbling away  at it and just start chipping away and realize that any step in the right direction is progress.  

00:54:36 

Linda Bluestein 

We're looking for progress, not, it's not an overnight thing. You didn't get where you were right overnight.  You're not going to get to where you're going to be overnight, and because you're probably not going to be  where you were when, 20 years ago or something like that, but we're looking for again, improve quality of life,  improve function and that kind of thing.  

00:54:59 

Jennifer Milner 

Excellent. And so where can people find you?  

00:55:03 

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. 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.  

00:55:26 

Jennifer Milner 

Perfect. 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. 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. I think  you'll find that 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, 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. And thanks everybody. And we'll see you next time.  

00:56:13 

Linda Bluestein 

Thank you for joining us for this episode of bendy bodies with hypermobility MD, where we explore the  intersection of health and hypermobility for dancers and other 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 at associated  conditions. Visit our website, www.bendybodies.org. For more information, for a limited time, you could win an  autographed copy of the popular textbook disjointed navigating the diagnosis and management of hypermobile  Ehlers-Danlos syndrome and hypermobility spectrum disorders just by sharing what you love about the bendy  bodies podcast on Instagram, tag us at bendy underscore bodies and on Facebook at bendy bodies podcast. 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.  

00:57:19 

Linda Bluestein 

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.