Empowering Zebra Warriors: THE Guide to Effective Physical Therapy for EDS and HSD with Lilian Holm, DPT

[00:35] Dr. Linda Bluestein: Welcome back, every bendy body. This is the Bendy Bodies Podcast, and I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD. This is going to be a great episode, so be sure to stick around until the very end so you don't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice.
[01:05] Physical therapy is commonly prescribed for those with symptomatic joint hypermobility, and many people experience tremendous success with PT, yet others struggle to achieve their goals. Today, your guest is Dr. Lillian Holm, DPT, who wrote a guest blog post for the HypermobilityMD website titled "Hypermobile: 5 Principles to Make Physical Therapy Work for You," which we will link in the show notes, and was extremely popular. She is here today to provide you with more tips for making physical therapy work for you.
[01:37] Dr. Lilian Holm provides individualized physical therapy services, personal training, and consultations for those with hypermobility disorders worldwide. For 30 years, she facilitated the health journey of patients, drawing on experiences in Sweden, Finland, and many prestigious Chicagoland clinics. She views physical therapy as part of the broader approach that incorporates treating both the human body and mind, as well as addressing lifestyle factors that are very important and often necessary in order to achieve the patient's goals. Her private practice is focused exclusively on patients with HSD and EDS. Dr. Holm, hello and welcome to Bendy Bodies.

[02:15] Lilian Holm, DPT: Thank you. I'm thrilled to be here.

[02:19] Dr. Linda Bluestein: Wonderful. Well, so many people have questions about physical therapy, right? They may have tried it or they didn't try it and want to make it work the best that they possibly can. So what can physical therapy do for people with symptomatic joint hypermobility?

[02:37] Lilian Holm, DPT: Well, I'm obviously very biased here, but it can do a tremendous amount of good. And to me, that is sort of the most logical, straightforward way of addressing symptomatic joint hypermobility in terms of the musculoskeletal aspect of our symptoms. So most people will always mention that they want to address their pain. And that, of course, goes without saying. We don't want to feel pain, but the way we get to the pain relief is by correcting function. So correcting function is really the main goal. And what that means is just getting your body back to what I call its factory settings. So everything is working the way it should.
[03:24] And once you get there, I think a very important benefit is that then we can start to tolerate what I call — facetiously — regular people exercise. In other words, tolerate strengthening exercise, aerobic training, that sort of thing, which is so important for all of us in order to not just feel good and energized and look good even, but to keep all the major diseases at bay: Alzheimer's, cardiovascular disease, cancer, diabetes, all of that. It's well recognized, of course, that exercise improves mood and is a good treatment for depression and anxiety. Depression and anxiety are, of course, very prevalent among individuals with HSD and EDS. So once again, using physical therapy to be able to tolerate enough exercise to reap those benefits is one of the benefits.
[04:30] And then it can be a very supportive and adjunctive treatment with many comorbidities. So for example, compression syndromes can benefit greatly from a more erect trunk, for example, to decrease the compression on the organs or blood vessels that are being compressed. And really what it can do is help you achieve any goal that you have where your physical body is involved. So thinking back to previous patients, it's been everything from just being able to return to gainful employment, being able to get back to running, and for one patient, even being able to climb a mountain for her children's wedding.

[05:19] Dr. Linda Bluestein: Wait, hang on a second. That's really interesting. So for her children's wedding — was the wedding at the top of the mountain or something?

[05:26] Lilian Holm, DPT: Yes.

[05:27] Dr. Linda Bluestein: For real?

[05:27] Lilian Holm, DPT: Yes. Interestingly enough.

[05:27] Dr. Linda Bluestein: Wow.

[05:28] Lilian Holm, DPT: But she would have hated to miss it. So that was a goal that we worked towards.

[05:39] Dr. Linda Bluestein: No, no one wants to miss their own child's wedding.

[05:41] Lilian Holm, DPT: No, no.

[05:41] Dr. Linda Bluestein: So we know that sometimes physical therapy does not lead to the expected outcome. And I'm also biased — I personally have been in and out of physical therapy since I was a teenager, and I firmly believe in physical therapy. I think sometimes it does take some trial and error finding the right physical therapist. We're going to get into that later in the conversation because I know a lot of people had questions about that — finding the right physical therapist, how do you know you found the right one, etc. But maybe you could give us some reasons why physical therapy sometimes does not lead to the expected outcome.

[06:18] Lilian Holm, DPT: So the main reason is really that the system fails the patient. And what I mean by that is that a hypermobile patient, a symptomatic hypermobile patient, requires a very specific approach. And as you know, we as healthcare professionals don't learn anything about EDS and HSD during our educational process — at least not enough for it to be actionable. Hypermobile patients logically assume that they can just go to any clinic and meet any therapist and receive appropriate treatment. But just like other professions, physical therapy is a very broad area and one person can't specialize in everything. So you can't be simultaneously specialized in pediatrics, pelvic floor therapy, sports therapy, neurological rehab, etc. We each choose our area of interest and specialization. So the hypermobile patient should ideally turn to someone with expertise in the area, but that can of course be hard to find, and we'll talk more later about how to go about that.
[07:41] So the second issue is something that hypermobile patients have in common with other patients, and that is that up to 70% of patients drop out before they're done with physical therapy. That can happen due to a variety of reasons, but one of the main reasons is probably that they're not quite prepared for what physical therapy is going to look like. They may expect that it's going to be a faster process than it is. They may expect that the care is going to be more palliative — that they're going to come in, perhaps get a hot pack and some ultrasound or a little massage or some sort of more passive treatment. And the truth is that we can't change the musculoskeletal system without activity. So the participation on the patient's part is crucial and needs to be ongoing. So it's good to be prepared and have a realistic expectation for that as well.

[08:43] Dr. Linda Bluestein: That makes sense. So 70% of people do not complete their course of physical therapy. That's a really important statistic. And that is not specific to people with EDS and HSD, right? You're just saying that's a general statistic.

[08:45] Lilian Holm, DPT: Yeah.

[09:00] Dr. Linda Bluestein: So I wonder what it would be for people with EDS and HSD. I bet it's higher.

[09:06] Lilian Holm, DPT: I've never calculated. In my practice it's not quite that high, but it certainly is a high percentage. And sometimes I think patients go along with therapy for a while, start to feel better, and then guess that they are now ready to start working out, for example. And they don't realize that they could use me as a resource, because for many activities there are very objective tests and measures that can tell us whether your body's ready for the activity or not. So instead, they may start some strengthening program online or at the gym or what have you. And then a few months later they come back with injuries, unfortunately.
[09:57] So I would encourage everyone to really communicate about everything with your therapist. We're not trying to hold you back. We're trying to get you to your goal as quickly as possible, but kind of like an airline pilot — not just as quickly as possible, but also safely.

[10:13] Dr. Linda Bluestein: Right. That's a good analogy. I like that a lot. I feel like it could be either direction that people drop out — because they feel like they don't need to finish the course, they feel like they're ready to exercise on their own or do movement on their own, like you said. Or they could feel like the physical therapy that they're doing is actually making them worse or exacerbating their symptoms. And rather than going back to the physical therapist, giving them that feedback and giving them the opportunity to change up the home exercise program, sometimes it seems like they just stop going. I think that happens probably to quote-unquote normal people, if there is such a thing, as well as people with EDS and HSD.

[11:02] Lilian Holm, DPT: And of course, if the therapy is actually making you feel worse, then something is going wrong. So if a frank discussion with the therapist doesn't help change the course of the therapy, then of course you should vote with your feet and you should be part of that 70% and stop going. We're not there to please the therapist. The therapist is in the service of the patient. So that's of course a very important point.

[11:34] Dr. Linda Bluestein: Right. Absolutely. Okay. So speaking of that, how do people who have EDS, HSD, symptomatic joint hypermobility of any sort — how do they go about finding the best possible physical therapist for them?

[11:52] Lilian Holm, DPT: That's a great question. So again, back to the idea of specialization. If you needed an endodontist, you wouldn't go to an orthodontist or a periodontist. You would go to the endodontist for your root canal. And in the same way, I feel very strongly that people with EDS and HSD need to understand that they need to be treated very differently — with a good understanding of everything from comorbidities to possible central sensitization, the whole shebang.
[12:38] So to look for someone who either specializes in hypermobility conditions or at least where a very large percentage of their patient population presents with these conditions would be important. And you could find people like that through directories, through online support groups, through a web search. You could familiarize yourself with practitioners on social media if they're active there, that sort of thing.
[13:08] What you don't want to do is just make an appointment at any random chain clinic or hospital-based clinic and show up and hope for the best, because that would be a little bit like going to a family practitioner hoping for very specific advice on a neurological disorder that isn't really within their area of expertise.
[13:31] And a lot of people will say, well, there is no such person in my geographical area. And that can often happen. As a second option, I would actually encourage people to work with someone online. I have seen that lots of people who treat hypermobile patients offer services online, just like I do. And that is a really, really good option. I admit that prior to COVID I would have felt a bit skeptical about that, because I wasn't familiar with it. But it's actually a really, really good option. It also saves time because you don't have to travel anywhere or sit in a waiting room. You just connect from the convenience of your own home. And if the therapist is licensed in your state, then those services tend to be covered by your insurance as well. Both Medicare and private insurers pay for telehealth services.
[14:31] And if those options don't work, then the last one would perhaps be a little bit imperfect but might work depending on the severity of the condition. That would be to find someone who isn't necessarily familiar with hypermobility conditions, but that you could have an open conversation with, and you get the sense and a promise that they're open to learning. You could direct them to the EDS Association's website. And if you're a very knowledgeable patient — which a lot of people are — you could ask them if they're open to you telling them a bit about your specific condition and your previous experiences, and then work with them. I have worked that way with a patient where I've done a consultation with them, they're not in my geographical area, and they want to work with a local therapist. I can consult that local therapist a little bit on hypermobility if they're open to that. And that can be a third option.

[15:54] Dr. Linda Bluestein: That sounds like a good way to go if somebody is in a remote area. I get messages all the time from people who have difficulty finding someone, so those are really nice options to lay out. And another thing that I often tell people is to find out what the model is for that particular clinic, because some places you'll see the physical therapist the first time, and then you're going to work with the physical therapy assistant a number of times. They'll have multiple people in one big room and they're kind of floating around, but you're not actually seeing the same physical therapist every time.
[16:40] I personally, right now, am going to a physical therapist where I'm paying cash, paying out of network, but that's because I get to see the same physical therapist every time. And she's knowledgeable about joint hypermobility and the implications. Also, the other thing I want to mention is that a lot of physical therapists do listen to this podcast. I've gotten messages from lots of physical therapists who have found the podcast helpful. So it's another great way for people to learn how to work with hypermobile bodies.

[17:14] Lilian Holm, DPT: Yeah, this is really such a great resource — really, I think the best resource out there for all things hypermobility. And yeah, thank you for mentioning what is euphemistically called care extenders. I don't think that's a safe situation, to be quite frank, because again, if you are relying on the expertise of the therapist and their back is turned and they're just delegating to someone else who may not be so familiar with the peculiarities of hypermobility — the risk is always that if the patient gets worse, then it's not just a waste of time and a lack of improvement. It can also be very discouraging. The patient may falsely get the impression that they can't be helped. It contributes to fear of the healthcare system in general, and it's just not something we want to have happen.

[18:10] Dr. Linda Bluestein: Yeah, definitely. And that can be so discouraging when things like that happen. And how does someone know when they have found the right physical therapist?

[18:21] Lilian Holm, DPT: Well, if you have very good reason to expect or know that they have a great deal of experience with hypermobility conditions — that is, of course, a very good sign. And hypermobility has something in common with sports medicine in that usually you don't need your practitioner to have your disease. You don't want your cardiologist to have heart disease necessarily. But just like with sports medicine, it actually helps if the sports medicine therapist is active in an athletic endeavor — that they're personally familiar with sports and not just in a theoretical sense. And I find that is also true for EDS and HSD, that it's actually helpful because it's very hard, I think, to understand this from the outside.
[19:23] Other good signs would of course be that you have very good and open communication, that you feel the therapist is taking you seriously, listening to your input, and is very interested in learning how these conditions have to be treated a little differently.

[19:47] Dr. Linda Bluestein: And being on the receiving end of physical therapy, I really like working with a physical therapist who's creative. They might say, let's try doing this particular exercise. I've had wrist surgery and major elbow surgery and a lot of different surgeries, so sometimes they'll have to adapt the exercise for me. And I hear other people say that sometimes the physical therapist gets annoyed with them. So if the physical therapist immediately says, okay, let's figure out how we can do this in a way that's not so hard on your wrist — I feel like that's a really good sign.

[20:26] Lilian Holm, DPT: Yeah, absolutely. That's so important with hypermobility because there are so many different things that get in the way — the wrist, the neck, this, that, and the other. So we constantly have to find ways to personalize the treatment. There's no one-size-fits-all approach that you can apply. It has to be incredibly individualized.

[20:41] Dr. Linda Bluestein: Right. And what do you do about people who don't like to exercise? I try to use the words "movement" and "activity" when I'm talking with patients and try to explain to them that the goal is not to get them doing crazy amounts of exercise, but to get them moving more and doing more activity and increasing their quality of life. Is there a different approach that you take with people who don't want to exercise per se?

[21:20] Lilian Holm, DPT: I actually think that it's not natural for us to want to exercise. When you think about it, no adult mammal expends energy if they're not hunting or running away from something. So if a lioness hunts and eats well, then she rests under a tree for the next three days. She doesn't run around like her cubs do, because then she'd be using up energy and need to go hunt again sooner. So that would just be a vicious cycle. As an adult human being, you don't have the same desire to run around and learn and practice like a kid. We would actually get our exercise under hunter-gatherer conditions just because we got hungry and had to go out looking for food and shelter and what have you. But now we live in a culture where we don't have to do that. So movement has become optional. And since we still don't want to move more than we have to, now we have to motivate ourselves intellectually.
[22:26] So for the vast majority of us, I don't think we can wait to feel inspired. I don't think we can wait to say, gosh, I just really want to go run around and exercise right now. We just have to be motivated through logic and our overall goals. So we're not trying to be drawn to the exercise per se, but we're pulled forward by our goal, by our understanding of what it's going to do for us. I recommend just seeing it as a non-negotiable, like brushing your teeth or washing your clothes — because that's how important it is. Just get it done.
[23:10] And the great thing is that we have scientific data showing that our ability to motivate ourselves — or at least overcome lack of motivation and be more disciplined about exercise — grows as we overcome that hesitancy. There's an area in the brain called the anterior midcingulate that is very strongly connected to willpower, tenacity, and perseverance. And when we do something that we don't quite feel like doing but we do it anyway — for example, get up and go do those therapeutic exercises that are your homework — that area actually grows. And then overcoming that hesitancy actually gets easier.
[24:03] I personally enjoy that thought a lot. When I wake up in the morning, I'm about to exercise because that's where it fits into my life. I rarely want to do it. I would like to stay in bed and read and research — that's my favorite thing. But I know that I need it. And I most certainly want the outcome. I want to stay healthy, I want to stay functional. That becomes more and more obvious as you get older, that you need it. And I want to continue aging well. So that's what draws me. And that little voice saying "I'd rather stay in bed" — it's gotten easier and easier to overcome, because we actually change as we act with discipline. It really helps to not think about, "do I want to do that exercise right now?" but to think about, "do I want that outcome?" Think forward in time a little bit.

[24:58] Dr. Linda Bluestein: That is very good advice. I really appreciate that, and it will be good motivation for me as well. I feel like some people are more naturally driven to exercise and have a higher energy level, and other people really do have to push themselves more. So it's very helpful to know that you actually activate parts of your brain that will make it easier if you just keep doing it. So if people have tried to exercise or attended physical therapy but then felt more tired or sore afterwards, or experienced more pain, what can they do?

[25:43] Lilian Holm, DPT: When things go in the wrong direction, that's a clear sign that the therapy was not properly calibrated — you weren't ready for what you were doing. I often like to think of prescribed therapeutic exercise — really all exercise — the same way we think of prescription medication. You are prescribed a medication specifically based on your needs and your symptoms. You are prescribed a specific dose that you'll take at a specific frequency for a specific duration of time. So all exercise needs to be calibrated. And just like when you're prescribed a medication — maybe you got something for your anxiety and depression and it didn't work so well — what the psychiatrist will do is maybe play with the dose a little bit, try another medication, etc. And exercise is a little bit like that. You can't always know precisely what's going to happen. So if there are any negative outcomes, we need to recalibrate.
[26:53] I always tell every single patient at the beginning of therapy that I never want you to hurt — not while you're performing an exercise, not after, not as a result of having performed an exercise. Because if it hurts, that's your body's voice telling you to change something. If it hurts, it is bothering your joints and your muscles; something is going wrong. You are either performing an exercise that is too demanding, you're not ready for it yet, or you have misunderstood it. Or maybe you understood it very clearly, but your proprioception is leading you to not perform it quite the way it was intended. But any negative outcome always means that something needs to be recalibrated.
[27:47] Maybe we have missed what I call a weak link. We all have some weak links. A typical hypermobile patient has multiple weak links at the beginning of therapy. Maybe the hip is not well stabilized. Maybe the lumbopelvic area — the low back and the pelvis — aren't quite stable. And then when we try to use our bodies, those areas will talk to us. So that's always a sign to pull back.

[28:16] Dr. Linda Bluestein: I like the idea of the weak links because I feel like oftentimes when this happens to people, they blame themselves. And sometimes we do have bodies where there is dysfunction or weak links in multiple different parts of the body. And everything's connected, right? So a weak link somewhere else is going to affect exercises for a different part of the body.

[28:42] Lilian Holm, DPT: Very, very true. And I notice from what patients tell me about their previous experiences — online and even sometimes with my own patients, even though I always start with "you are not supposed to feel pain" — they will still go into their exercises with the expectation that it must hurt for them to get better. That can be a very deeply rooted belief. So I think it's important to communicate with the therapist immediately. Don't feel like you have to push through pain. That is a horrible expression to me. There's always a better way of doing it that is specific and well-suited to you in this moment.

[29:23] Dr. Linda Bluestein: And that's a perfect lead-in to a question that someone asked online in anticipation of this interview, which was: how can someone convey to their physical therapist that they don't benefit from working to muscle failure?

[29:26] Lilian Holm, DPT: The term "muscle failure" can easily be misunderstood. In order to strengthen muscles, we do need to fatigue them. And I think "fatigue" is a better concept that communicates more clearly to the patient what we're actually going for. We don't want you to end up on the floor in a puddle of sweat. Muscle fatigue is something that triggers muscle growth. And especially when we're working on those bigger external movement muscles, we do need to fatigue them in order to trigger them to grow.
[30:21] But fatigue is very clearly and specifically defined as when you can no longer perform the exercise with good form. As soon as your form starts to change and not look quite so perfect anymore, that by definition means that the muscle you're targeting is now tired and you are done. You should not continue. And I think that is a much more clear message and doesn't convey to the patient that they should keep pushing until they can't push anymore. Because if they do, they will be performing a lot of exercise in the range where they are getting it wrong — where the target muscle is already tired and now there's a lot of compensation and what I jokingly call cheating — and that can start to irritate tissues.

[31:10] Dr. Linda Bluestein: And probably reinforce suboptimal neuromuscular patterns as well, right?

[31:19] Lilian Holm, DPT: 100%. Yes, exactly right.

[31:25] Dr. Linda Bluestein: Okay. Are there other common misconceptions about physical therapy for joint hypermobility that we should be aware of?

[31:34] Lilian Holm, DPT: So again, I think one of the most common ones is that physical therapy should hurt. One of the names we're given is "physical terrorist."

[31:46] Dr. Linda Bluestein: Oh, I've never heard that actually.

[31:51] Lilian Holm, DPT: Or "physical torture" or something like that.

[31:55] Dr. Linda Bluestein: Right.

[31:57] Lilian Holm, DPT: Leaving other specialty fields aside, maybe there's a place for pain somewhere else, I don't know. But in hypermobility rehabilitation, I'm absolutely against it. So therapy should not hurt — it should be a gradual progression in the right direction. So that pain component is a common misperception.
Another one is the idea that you go, you get your exercises, these are your hypermobility exercises, and now you do them. A better way to think about therapy is to use the idea of school. You start in first grade, you work on the material in first grade, and once you've mastered it, you're ready to move to second grade, and so on. That way you're progressing constantly. And at the end of this progression, you have your long-term overall goal.
[32:58] Just like if a kid was placed in third grade instead of first grade, they would not be able to pick up on the material and they would fail. They would end up with the misconception that they are learning disabled, that they can't learn the material — but they're just in the wrong grade. So when we try to start too far out, even start where we want to end up, failure is the most likely option. And then we believe that we can't be helped.
[33:29] So if you think of therapy as a school, the first exercises that you're given — your task is to master them, get past them, and move on to the next exercise, which builds on the first. Gradually you're moving on to more and more complex compound movements, functional movements, and getting closer and closer to your overall goal. So that's a very common misconception — that it's more of a static thing as opposed to a dynamic, progressive thing in the right direction.

[34:10] Dr. Linda Bluestein: Okay. And are there other things that patients can do — especially keeping in mind the common problems that people with joint hypermobility face — to achieve the best possible outcome from their physical therapy, besides the fabulous things that you've mentioned already?

[34:28] Lilian Holm, DPT: Yes. Again, thinking of the medicine analogy — really try to be very, very regular and persistent with your homework so that you dose your exercise correctly. Every time you exercise, you're stimulating your body, you're creating desirable changes that move you closer to your goals.
[34:56] Another very important thing is to remember to communicate very closely with your therapist. It's impossible for the therapist to guess what you're feeling. So instead of saying, "this exercise hurts," just describe exactly what you're feeling. Where do you feel it? What does it feel like? When did it start? The more we know, the more we can help you. And there are no stupid questions. I even tell my patients — they get an exercise app to use — so I encourage them to contact me through the app between sessions if they have questions, just reach out so that you're always on the right track. And again, the same thing holds true for when you're done. Don't just assume that you're done, because we can make sure that you are ready for your overall goal.

[35:56] Dr. Linda Bluestein: Okay. And we got some really great questions from people online who knew that I was going to be interviewing you. So I'd love to go into some of those. Multiple people asked how to reset the boom and bust cycle and how to know when to rest versus keep going with gentle exercises.

[36:20] Lilian Holm, DPT: The boom and the bust. Yes. Well, the simple answer is just don't.

[36:24] Dr. Linda Bluestein: Just don't.

[36:25] Lilian Holm, DPT: Don't do it. But I've been there myself, so I'm definitely not pointing fingers. It's all too easy to end up there. But when you've had a few cycles of boom and bust, then it's time to realize that this is not sustainable. It's a very wearing way to live, to go from inactivity because you're so tired to overactivity that you're not ready for.
[37:00] You can use your therapist as a resource, especially if the boom and bust has anything to do with your exercise goals. But I think it's useful to look at rehabilitation very broadly. I speak about a very broad range of topics with my patients. If they're not sleeping, for example, we need to resolve that or they will not get any results with their therapy.
[37:28] And of course we live in the real world and we have tasks that need to be done. So if the boom part involves something that's more or less unavoidable, just do your very best to delegate and to pace yourself — especially if you're still at the stage where it's difficult to tolerate an upright position. If what you're doing is something in the kitchen or at the computer and you're getting really tired, part of the discomfort you're feeling is that you are tensing external muscles that aren't really well designed for that static ongoing work. You only need to contract your muscles at about 30% of their maximum contraction to cut off the blood circulation and the oxygen supply. So now your muscles are not getting oxygen and you're hurting. And just lying down for 10 or even 5 minutes and resting your head so that you don't have to hold it up against gravity can really reset you and help you tolerate the activity if it's something that you really do have to take care of.

[38:43] Dr. Linda Bluestein: And I think that ties into what I often tell people about listening to their body in the right way with the correct ear, because I think oftentimes we get anxious and we don't listen to our body's signals. If we're in pain a lot of the time, we're kind of used to having a chronic low level of pain. But if we can listen with a more curious mindset and think, okay, I'm actually starting to feel some discomfort, maybe I should go lay down for a few minutes — but not go into that anxious part of the mind, "oh my gosh, what's happening now?" — I think that's a really good tip. As you said, to avoid that boom and bust, just take a little rest, let your muscles relax before continuing with whatever it is you're doing.

[39:38] Lilian Holm, DPT: Yeah. And I think it's very important to be able to learn to distinguish between true energy — do you really have energy, or are you just in sympathetic nervous system overdrive? In fight-or-flight mode, because hypermobile people tend to spend a lot of time in that mode. There are so many factors that push us towards that. Go take a look in the mirror. Are your pupils really dilated? Maybe you're just in sympathetic nervous system overdrive and not really energized and ready to be super active.
[40:07] And another way to find out if you truly are rested and energized is to go relax — do a guided relaxation, a guided meditation, or just do some deep breathing or relax your body. And if you get sleepy when you relax, start yawning and just feel tired, then you were actually not truly rested. You were just running on adrenaline and cortisol. And then it's not a good time to go flying around and use that fake energy, even if it may feel good in the moment, because that will result in that bust — because there's only so long you can go on all cylinders. We should be spending much more time in parasympathetic nervous system mode and not always be revved up.

[40:59] Dr. Linda Bluestein: What a fabulous point. I think that probably applies to a lot of people. I think a lot of people can relate to that.

[41:08] Lilian Holm, DPT: I would think so.

[41:09] Dr. Linda Bluestein: Okay. Another question that multiple people asked was: what is your professional opinion about the Maldoni physical therapy protocol?

[41:23] Lilian Holm, DPT: Yes, that's an interesting question. I would start out by saying that, as you know, in science the goal is not to arrive at a static consensus — it's rather a gradual push forward, a search for always finding the best way of doing things. So just like in science in general, there is a lot of disagreement in physical therapy. There is not just one way of looking at things or doing things. And that's a really fabulous thing because it keeps it dynamic and keeps us going in the right direction.
[42:00] When it comes to the Maldoni Protocol, I'm not very fond of it for a number of reasons. It's just that I look at things differently and go about things differently, so it's not something that I would recommend. A couple of reasons: rather than doing some predetermined exercises the same for everyone, I like to be more specific, individualized, and granular. As you previously mentioned, faulty movement patterns are a big problem with hypermobility. We have survived for a long time just tensing and bracing and doing all sorts of things that aren't really the right and gentle way of using the body. And if we go straight to whole-body functional exercises, we're just going to drag all those movement patterns with us. So I like to start with a much more granular approach, making sure that any muscle that is not firing correctly, any muscle that is weak but is needed for the next step, first gets awakened. Again, I think of that as finding those weak links and correcting them.
[43:17] The other part that I don't agree with is bringing a book to your therapist and asking them to have you perform exercises out of a book. That's a little bit like bringing an instruction manual to tell your dentist how to drill your teeth, or expecting someone to do surgery with a manual that you brought along. You would not trust that surgeon. And if you find a therapist who would agree to work that way, you have probably not found the right therapist. The sort of one-size-fits-all approach is just not a good match for how I think about things.
[44:02] But I do agree with him on a couple of points. Definitely — one is understanding that therapy for a very symptomatic person with joint hypermobility has to take time. It's going to take a while and we need to progress gradually and work our way to the end goal. And the other point that I really strongly agree with is his thoughts on manipulating the hypermobile body, especially the pelvis. We have to be extremely gentle there. I strongly caution my patients against allowing any high-velocity manipulations. I've actually developed techniques for that myself where I don't apply any force to the patient's body and it works anyway. So he's absolutely right about that — we need to be very careful there. But it's not a work that I would lean on or generally recommend for those reasons.

[45:02] Dr. Linda Bluestein: I really appreciate that. Thank you so much. And what metrics do you use to measure success for the patient? Somebody specifically asked that — after working with multiple different physical therapists, they felt that their physical fitness level had not improved at all, and they wanted to know about metrics.

[45:31] Lilian Holm, DPT: Great question. We would start with an overall goal. Let's say the patient's goal is to tolerate a specific type of physical activity. For argument's sake, let's say they want to be able to tolerate a little bit of aerobic conditioning and some strengthening. That's their goal. And they're starting at a point where that is not appropriate for them at all.
[46:03] There's actually a very logical progression to that goal. You could almost think about it as a staircase — you need to start at the first step and work on certain areas of the body that are prerequisites for the next area. And this actually coincides with how we develop as babies. We need to have trunk stability first. The first thing a baby does is maybe turn over on the floor, then they start to creep and crawl, developing stability in the shoulders and hips. After that they start to stand up — that's when they learn to control their knees and their feet. And only then do they develop fine motor control in the hands. This is not random. It's for biomechanical reasons. And that same order is very much visible in physical therapy too, when we're progressing up that staircase towards the long-term goal.
[47:06] So how do we measure success? We want to see each and every level conquered. If you want to be able to tolerate pulling and pushing — whether it's for your activities of daily living or exercise or because you have a baby on the way — you first need to develop stability in the lumbopelvic area to hold your spine up. Then you need to have a stable rib cage. And your arms are attached not to your rib cage but to your shoulder blades. So the next step would be to develop stability and control around the shoulder blades. And then from there, you could start to practice actually pushing and pulling and doing something with those arms that are now strongly anchored to your body. So it's a very straightforward process to make sure that we have met all of those steps.
[48:02] Now, if you are starting from a very unstable place, you are of course not really feeling strong yet — you're working on stability, not strength. It's very different. Muscles produce strength in the body, and your aerobic conditioning is not improving through stabilization exercise. So if you're getting a little anxious during the rehabilitative process about that, again, talk to the therapist. You will get to the strengthening phase, and perhaps if you feel like you want a little more exercise in your life — for mental and emotional reasons, just to work on your aerobic conditioning — you could include a stationary bike, for example. So there's flexibility there. But we don't get from point A to C without going through all the stepping stones in between. And that's very, very measurable.

[49:06] Dr. Linda Bluestein: And I've noticed for me in physical therapy, I can go and make significant gains, but then something happens — I travel and so I'm not as compliant with my exercise, or I get sick or something like that. And also I think it's important for most people to be aware that the progress is often not linear, right? Five steps forward, two back, six forward, five back. But hopefully we're building on some success.

[49:42] Lilian Holm, DPT: That's very true. And that's of course true throughout our life too — things can happen where there's a setback and then we're making a comeback again. But during those times when you're busy or traveling or ill, I encourage my patients to do what I call treading water. If you're metaphorically swimming across a lake and you can't swim right now because you're traveling or whatever, you also don't want to sink to the bottom of the lake. So you're going to do a little something that doesn't help you progress, but it's going to help you maintain.
[50:22] I had a patient recently who was home sick with COVID for a while. She was well prepared and very diligent, so she still remembered to keep doing some stabilizing exercises while lying in bed. And she was able to make a really good comeback very quickly, thanks to treading water — not dropping the ball 100%, but understandably not working at her normal level.

[50:53] Dr. Linda Bluestein: I just love how you worded that. That is really fabulous. And I like the idea of a comeback because I feel like that's really empowering. People with EDS and HSD tend to get hard on themselves and beat themselves up for the things that they haven't accomplished, and forget the things that they have. And I think in a lot of cases we're actually very resilient because we've had to overcome so many things, especially at younger ages compared to people who have not had these problems.

[51:25] Lilian Holm, DPT: Absolutely. All we need to remember to do is look back and say, I have faced this before and I overcame it. And I will overcome it again. Definitely.

[51:38] Dr. Linda Bluestein: Yeah. I think that's a great point. So what about balancing stretching with strengthening? For me specifically, I went through a period of my life where I didn't stretch at all. I was having so many problems with my low back and my hamstrings and everything just tightened up so much. I know part of it's neurologic, but how do you advise people with hypermobile bodies to balance those two things?

[52:13] Lilian Holm, DPT: I'm laughing a little bit because I used to be the very flexible young person who thought, "stretching — that's not something I need." And now, of course, I have a very different opinion.
Stretching and strengthening both bring their own important benefits. It's like saying, how do you balance carbohydrates and protein? Well, you probably need both, and on an individual basis. If you're very physically active, you might need more carbohydrates. In the same way, how much stretching you need and what specifically you need to stretch is determined by your individual needs and findings.
[52:53] Some people have very, very tight hip flexors that get in the way. The way you would balance that would very often look like this: you might be doing stretching of the tight muscles, and then you would do some strengthening and activation of the opposite muscles — in that case, the glutes. So both are important, but they're also interdependent. A muscle will often become tight when its opposite muscle is underactive. All muscles in the body have an opposite one — if something moves you this way, there is an opposite muscle that moves you in the other direction. As a general rule, we tend to become very tight in front. Our chest muscles become tight, our hip flexors become tight, and then we become weak in the back. Many people just use their glutes as a cushion, not as something to propel them forward in life. And the back of the shoulder girdle becomes weak. So you can see how in those cases you might stretch one side and then strengthen the opposite side, and that combination would give you the best results.
[54:13] But if the person asking is thinking about conquering more range of motion — say your shoulder has been very tight and you're regaining that mobility — then it's of course very important to work on your stability in that range. You don't want to be able to fall into the splits but not have muscle control in that position. So that's another important consideration.

[54:39] Dr. Linda Bluestein: Okay. I'm sure you have seen this before — I certainly have, especially sometimes with young people. People end up getting so many accumulated medical problems and for a variety of reasons end up spending most of their time in bed or becoming bedbound. Of course, you don't know any one individual's situation, but how can somebody start walking again once they have gotten to a point where things are that severe? Do you have any thoughts about that?

[55:09] Lilian Holm, DPT: First, you have to have hope and a belief that it can be done. Think about other people who have done it. See if you can find any role models, any examples — someone else who's done it. Many people have done it. I have had many patients who have done it.
[55:25] And then you start building back, kind of in that same logical, biomechanically determined order that we discussed previously. First-step exercises can be done in bed. You can start waking up your pelvic floor in bed. You can start waking up your deepest abdominal muscles in bed. You can even start waking up your supportive spinal muscles in bed. So you can actually arm yourself with a little bit of stability that way.
[55:56] And then you just think about the fact that your body needs to very gradually — both in terms of orthostatic tolerance, being able to be upright against gravity, and in terms of your mitochondrial functioning, your ability to produce energy — work through a lot of separate partial comebacks built in there. But again, it's not about just trying to stand up and walk off. Your overall goal is to get up and become mobile again, and you want to strategize with someone who can help you about the partial steps along the way so that you can get there.

[56:37] Dr. Linda Bluestein: Yeah, there are probably a lot of steps in between, I would think. What about another specific question before we kind of wrap up here? What about people who have hypermobile EDS and scoliosis? We know scoliosis is definitely more common with connective tissue disorders. Do you have any thoughts about physical therapy for people with scoliosis?

[57:00] Lilian Holm, DPT: So again, ideally — and that's a great example of where you can find expertise and that's going to serve you the best. There are physical therapists who specialize in the treatment of scoliosis, and looking for someone like that — in person ideally, if not then online as a second best option — that's really what you want to do.
One little tidbit: something that is also more common in hypermobility is that, in my experience, most people with scoliosis have an unevenness in the pelvis. If your pelvis is not straight but is tilted — think of your pelvis as a flower pot and your spine as the flower stalk — that's going to grow sideways. And just like the flower tries to get up to the sun, our body has very strong righting reflexes that want to get the head over the body, and now you have a scoliosis.
[58:04] So if you see a scoliosis developing in a kid who's still growing, especially, it can be very useful to have someone look at their pelvic alignment and see if there's some contributing factor there. I've had patients who were still prepubertal and were starting to develop a scoliosis. One girl, for example, had both a leg length discrepancy and an ilium — her hip bone — that kept rotating, and that seemed to be creating the scoliosis. As I followed her through her growth spurt and through puberty, every summer when she didn't attend physical therapy and didn't use her heel lifts, the curvature came back. And then during the school year, it straightened out as she kept growing and we kept everything below the spine level. In the end she was able to go through puberty without developing a scoliosis. But for someone who's already an adult and looking for the best possible outcome, see if you can find someone who is an expert in that area.

[59:19] Dr. Linda Bluestein: Okay. That's a great analogy about the pelvis and the plant and the flower pot. That makes perfectly good sense. I like that. So can you let us know where people can learn more about you after this episode? And also, someone asked if you had any informational documents that people can share with their own physical therapists?

[59:43] Lilian Holm, DPT: One of the places where you can find me is my website, and that's simply my name — Lillian Holm, one L in the middle. And there is a tab about hypermobility, and there is a document — admittedly a work in progress — that you can download. It starts with "Dear colleagues," so it's directed to a physical therapist who may not be familiar with hypermobility disorders. There's a brief description of what they are and how they may affect the patient, and some of the most important things to keep in mind. So that exists there. And then you can find me on Instagram as @hypermobility and on Facebook as well.

[1:00:34] Dr. Linda Bluestein: I will link that in the show notes so everyone can find those places very easily. And last question — can you tell us some of your favorite hypermobility hacks?

[1:00:47] Lilian Holm, DPT: Sure. How many can we list?

[1:00:51] Dr. Linda Bluestein: As many as you want.

[1:00:55] Lilian Holm, DPT: I would say that the most important one is: start where you are. Please don't try to start with the activity that you eventually want to be able to tolerate. Start where you are. You can find out where you are perhaps best with the help of a therapist. But even if you're not having physical therapy — if you want to run, you need to be able to walk first. The level that you want to achieve, that will come later. The starting point is where you find yourself right now. And if you've fallen off from exercise or activity, there's a very natural inclination to jump back right where you left off. But you are not there anymore. We need to be humble enough to admit and recognize where we are in the moment, start working there, and that way we won't risk injury.
[1:01:57] There's actually a wonderful Swedish saying that translates roughly to "hurry slowly," and what we mean by that is that we are getting where we want to go as quickly as possible, but thoughtfully and mindfully — not just rushing ahead.
[1:02:16] The second hack kind of ties into what we talked about already. Don't wait to feel inspired to exercise. That moment may not come, or it may not come often enough for you to get the exercise done as often as it should. Just see it as one of the non-negotiable tasks. You brush, you floss, you exercise. And over time it just gets easier and easier. Once you get a habit going, the habit carries you very far.
[1:02:44] And then I want to share something that I use myself as well. When you know that it's time to do your therapeutic exercises — your physical therapy homework — don't think about the whole workout. Don't think about all the exercises you're going to do. That can feel overwhelming and will just be too high of a threshold and will hold you back. So just think about the first step. For me, for example, that would typically be hopping onto my stationary bike to warm up. Because once you've gotten going, you're not the same person anymore. Once you've gotten going a little bit, your adrenaline level's a little higher, and you've overcome that hesitancy of getting started. And now it's so much easier to continue through the rest of the exercise. So just think about the first step — kind of like ascending a flight of stairs, you do it one step at a time.

[1:03:59] Dr. Linda Bluestein: That's fabulous. I find that even though I love my physical therapist, and I know that I have to keep doing the exercises — like I said, when I travel sometimes it's hard to figure out what door I can attach these bands to without pulling off the doorknob, that kind of thing — I know it's really important, but sometimes getting myself motivated is hard. I find myself it's like I'm getting ready to go to bed and it's like, oh, I haven't done my exercises yet. So I'm really going to apply that one myself. I think those are really great tips.
[1:04:32] Okay, well you have all been listening to Bendy Bodies with the Hypermobility MD Podcast, and your guest today was Dr. Lillian Holm, who goes by Hypermobility Doctor online. You definitely want to make sure to follow her. And Dr. Holm, I'm so grateful to you for coming on the Bendy Bodies Podcast today and sharing your vast wisdom and knowledge with us. I think a lot of people are going to find this information so incredibly helpful. I think people hear "physical therapy is so important," but they've tried it and it hasn't always worked out the way they had hoped. And I think you just shared some incredible information that is going to help a lot of people really get the outcomes that they want.

[1:05:14] Lilian Holm, DPT: Thank you. It's been great. Thank you for having me.

[1:05:15] Dr. Linda Bluestein: Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast. Visit our new website at bendybodiespodcast.com where you can now view guest profiles and show notes with links to products and journal articles. Leave me a comment, sign up for updates, leave a review or a voicemail, and access the podcast on your favorite player, all directly from our website. You may hear your voicemail in a future episode where we answer your question or dive into your gracious feedback.
[1:05:46] Follow us on Instagram at bendy_buddies. We love seeing your posts and stories, so be a buddy and engage our community by using the hashtag Bendy Buddy — that's hashtag B-E-N-D-Y B-U-D-D-Y. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, Twitter, or LinkedIn at HypermobilityMD. Visit hypermobilitymd.com for information about medical services and one-on-one coaching.
[1:06:12] This podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. Do not disregard or delay obtaining medical advice for any medical condition you have. Opinions shared are that of the guest and do not necessarily represent the views of the host or any particular organization. Sponsorship of the podcast does not necessarily mean an endorsement. Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.