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

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Linda Bluestein, MD (00:04.171)

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. Lilian Holm, DPT, who wrote a guest blog post for the Hypermobility MD 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.

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.

Lilian Holm (01:12.258)

Thank you, I'm thrilled to be here.

Linda Bluestein, MD (01:15.583)

Wonderful, wonderful. Well, so many people have questions about physical therapy, right? They may have tried it or they didn't try it and wanna make it work the best that they possibly can. So what can physical therapy do for people with symptomatic joint hypermobility?

Lilian Holm (01:34.186)

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 hypomobility 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 few people want to feel pain.

But the way we get to the pain relief is by correcting function. So, uh, 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 they showed. And once you get there, I think a very important benefit is that then we can start to tolerate what I call regular people exercise, facetiously. 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 or depression 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

Lilian Holm (03:26.678)

one of the benefits and then it can be a very supportive and injective 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 in your body where your physical body is involved. So thinking back to previous patients, it's been everything from just being able to return back to gain full employment, be able to get back to running, and for one patient even being able to climb a mountain for her children's wedding.

Linda Bluestein, MD (04:19.346)

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? For real? Wow. And this is...

Lilian Holm (04:22.42)

Yeah.

Lilian Holm (04:26.582)

Yes, yes, yes. Interestingly enough, yes, but she would have hated to miss it. So that was a goal that we worked towards.

Linda Bluestein, MD (04:35.591)

Yeah, of course. Of course. No, no one wants to miss their own child's wedding.

Lilian Holm (04:42.301)

No.

Linda Bluestein, MD (04:45.823)

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 and that kind of thing. And we're gonna get into that later in the conversation because I know a lot of people had questions about that, finding the right physical therapist and how do you know you found the right one, et cetera. But maybe you could give us.

some reasons why physical therapy sometimes does not lead to the expected outcome.

Lilian Holm (05:21.41)

So the main reason is really that the system fails the patient. And what I mean by that is that a hypermobile patient, the symptomatic hypermobile patient, requires a very specific approach. And as you know, we as health care professionals don't learn anything about EDS and HSD during our educational process, at least not enough for it to be actionable.

and hypermobile patients need to turn to specialists, but very logically, of course, assume that they can just go to any clinic and meet any therapist and receive appropriate treatment. But just like other professions, there are...

Physical therapy is a very broad area and one person can't specialize in everything. So you can't be simultaneous. We specialize in pediatrics, pelvic floor therapy, sports therapy, neurological rehab, et cetera. So we each choose our area of interest and specialization. So really the hypermobile patient should ideally turn to someone with

expertise in the area, but that can of course be hard to find. We can talk later more about how to go about that. But the other most common reason, apart from various more detailed reasons, is something that hypermobile patients have in common with all other patients in physical therapy. And that is the startling number of patients who don't complete their

therapeutic process. So 70% drop out somewhere along the way. And that can of course also happen due to a variety of reasons. But a big contributing reason is probably that there is a bit of a

Lilian Holm (07:26.21)

there's an expectation of physical therapy, maybe looking different for what it ends up looking like.

Linda Bluestein, MD (07:27.147)

So Lillian, I'm getting a message having issue.

Linda Bluestein, MD (07:33.687)

I'm sorry, I'm going to have you back up just a little bit because I got a message having difficulty communicating with the server. So could you start back where you were saying 70% dropout because I want to make sure that we get that part. Now we're back to 99% uploaded, but I got that error message. So sorry about that. I'm going to say the word mistake so I can find this easier.

Lilian Holm (07:42.535)

Okay.

Lilian Holm (07:52.148)

Okay, no problem.

Lilian Holm (07:56.436)

Okay.

All right, 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. And that can of course 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 gonna 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.

Linda Bluestein, MD (09:09.015)

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, right? Yeah, yeah. So I wonder what it would be for people with EDS and HSD. I bet it's higher.

Lilian Holm (09:21.358)

Correct, correct. Yeah.

Lilian Holm (09:30.238)

Yeah, I've never calculated in my practice, it's not quite that high, but it's certainly, you know, it is a high percentage. And sometimes it's just that I think patients go along with therapy for a while, start to feel better. And what I see happening often is that they guess that they are now ready to start working out, for example, and they don't realize.

Linda Bluestein, MD (09:36.526)

Mm-hmm.

Linda Bluestein, MD (09:56.414)

Mm.

Lilian Holm (09:57.998)

that they could use me as a resource because we have for many activities, there are very objective tests and measures that can tell us whether your body is ready for the activity or not.

So instead, they may kind of 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. 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. So.

Linda Bluestein, MD (10:37.815)

Right, right, that's a good analogy. I like that analogy 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, like you said, to exercise on their own or do movement on their own. Or they could feel like the physical therapy that they're doing is actually, at least I hear this a lot from my patients, that they feel like it's making them worse. Or...

that it's exacerbating their symptoms and rather than going back to the physical therapist and giving them that feedback and giving them the opportunity to change up the home exercise program. Instead, sometimes it seems like they probably stop going. I think that happens probably to quote normal people if there is such a thing, as well as people with EDS and HSD.

Lilian Holm (11:05.148)

Mm-hmm.

Lilian Holm (11:25.542)

Yeah. 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. So we're not there to please the therapist. The therapist is in the service of the patient. So

Linda Bluestein, MD (11:35.156)

Right.

Lilian Holm (11:54.782)

That's of course a very important point.

Linda Bluestein, MD (11:58.379)

Right, right, absolutely. Okay, so speaking of, 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?

Lilian Holm (12:17.478)

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 or what have you. You would go to the endodontist for your root canal. And in the same way, I do feel very strongly that it's important that people with EDS and HSD

understand that they need to be treated very differently with a good understanding of everything from comorbidities to possible central sensitization, the whole shebang.

Lilian Holm (13:04.318)

I think to look for someone who's either specialized is 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, maybe through online support groups, through a web search. You could familiarize yourself with practitioners on social media sometimes, if they're active there, that sort of thing.

what you don't want to do is just make an appointment at any random, you know, 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 or something that isn't really within the area of expertise of that family practitioner. And

A lot of people will of course say, well, there is no such person in my geographical area. And that can often happen. And, and what do you do then? And 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. So that is a really, really good option. I have to admit that prior to COVID.

Linda Bluestein, MD (14:05.195)

Yeah.

Lilian Holm (14:27.366)

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. And it actually saves time too, because you don't have to travel anywhere, sit in the waiting room and that sort of thing. You just connect from the convenience of your own home and save time as well. And if the therapist is licensed in your estate, then those services tend to be covered by your insurance as well.

Linda Bluestein, MD (14:32.814)

Mm.

Lilian Holm (14:57.63)

both Medicare and private insurers pay for telehealth services. If those options don't work, then the last one would perhaps be a little bit imperfect, but might work as well, depending on the severity of the condition. That would be to find someone who is not 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. And you could maybe direct them to the ADS Associations website. And if you're a very knowledgeable patient, which a lot of people are very knowledgeable about their condition, or you could ask them if they're open to you telling them a bit about your specific condition and your previous experiences and that, and then work with them. And sometimes you can get that

therapist to accept some input from someone. So I have worked that way with a patient where I've done a consultation with them. They're not in my geographical area, that sort of thing, and they want to work with a local therapist. And then I can, you know, consult that local therapist a little bit on hypermobility if they're open to that. And that can be a third option.

Linda Bluestein, MD (16:28.731)

That sounds like a good way to go if somebody is, yeah, I get messages all the time from people that are in remote areas and have difficulty finding someone for sure. So that seems like those are really nice options to lay out. And another thing that I often tell people is find out what the model is for that particular clinic because I myself, having like I said, been in physical therapy in and out since I was a teenager, some places you'll see the physical therapist the first time and then you're gonna work with

Lilian Holm (16:38.672)

Mm-hmm.

Linda Bluestein, MD (16:58.319)

physical therapy assistant a number of times and 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. And I personally right now, I'm going to a physical therapist, I'm paying cash, I'm 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. And also

The other thing I want to mention is a lot of physical therapists do listen to this podcast. I've gotten messages from lots of physical therapists that have found the podcast helpful, so it's another great way for people to learn how to work with hypermobile bodies.

Lilian Holm (17:43.646)

Yeah, this is really such a great resource, really, I think the best resource out there for all things hypermobility. So I'm really happy to hear that. And 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, again, 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 falsely may get the impression that they can't be helped.

It contributes to the fear of the healthcare system in general, and it's just not something we want to have happen.

Linda Bluestein, MD (18:42.551)

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?

Lilian Holm (18:53.834)

Well, again, 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 is, it has something in common with sports medicine in that.

Usually you don't need for your practitioner to have your disease. You don't want your cardiologists to have heart disease necessarily. But just like with sport medicine, it actually helps if the sports medicine therapist is active in an athletic endeavor. That they're actually personally familiar with sports and not just in a theoretical sense. And I find that is also true for EDS and HSD, that there it's actually helpful because it's very hard.

I think to understand this from the outside. And other good signs would of course be that you have a very good and open communication, that you feel that the therapist is taking you seriously, listening to your input, and again is very interested in learning how these conditions have to be treated.

a little differently.

Linda Bluestein, MD (20:23.099)

And being on the receiving end of physical therapy, I really like working with a physical therapist who's creative. They might say, I want you to, let's try doing this particular exercise. And I've had wrist surgery and I've had major elbow surgery and I've had a lot. So I've had so many different surgeries. So sometimes they'll have to adapt the exercise for me. And I hear other people say, well, sometimes the physical therapist gets annoyed with them. So if the physical therapist is very...

Lilian Holm (20:50.391)

Mmm.

Linda Bluestein, MD (20:51.227)

is like immediately, okay, let's figure out how we can do this in a way that's not so hard on your wrist or that kind of thing. I feel like that's a really big sign, a really good sign, I should say.

Lilian Holm (21:01.602)

Yeah, absolutely. That's so important with hypermobility, because there's so many different things that get in the way, you know, the wrist, the neck, this, that, and the other. So we constantly have to find ways to personalize the treatment, right? There's no one fits all approach that you can apply. It has to be incredibly individualized.

Linda Bluestein, MD (21:17.967)

Mm-hmm.

Linda Bluestein, MD (21:25.099)

Right, 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 and that kind of thing. Is there a different approach that you take with people who don't want to exercise per se?

Lilian Holm (21:55.702)

I actually think that it's not natural for us to want to exercise. You know, when you think about it, no adult mammal expends energy if they're not hunting or running away or something like that. 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'll be using up energy and need to go hunt again sooner.

Linda Bluestein, MD (22:01.8)

Mmm.

Lilian Holm (22:25.496)

vicious cycle. So as an adult human being, you don't have the same desire to run around and learn and practice like a kid. So we actually

would get our exercise under, you know, 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, 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. 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 that we're not trying to have, you know,

be drawn to the exercise per se, but withdrawn forward, we pulled forward by our goal, by our understanding of what it's gonna do for us. So I recommend just seeing it as a non-negotiable, like brushing your teeth or washing your clothes, because that's how important it is, right? Just get it done. And the great thing is that...

We have scientific data showing that our ability to motivate ourselves or at least overcome lack of motivation, to be a bit more disciplined, for example about exercise, grows as we overcome that hesitancy. So there's an area in the brain called the anterior midcengulate.

Lilian Holm (24:11.842)

that is very strongly connected to willpower, tenacity, perseverance, that sort of thing. 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.

And I actually personally enjoy that thought a lot. So 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. You know, 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 wanna stay healthy. I wanna stay functional.

Linda Bluestein, MD (24:54.699)

Huh.

Lilian Holm (25:01.678)

uh that becomes more and more obvious as you get older to need it and I want to continue aging well so that's what draws me and then that little I'd rather stay in bed I know that it's gotten easier and easier and easier and now I know why because we actually change um as we

Linda Bluestein, MD (25:05.911)

Mm-hmm. Yes, definitely.

Lilian Holm (25:25.31)

as we act with discipline. And 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? Like think forward in time a little bit.

Linda Bluestein, MD (25:41.311)

Yeah, that is very good advice. I really appreciate that and will be good motivation for me as well. I feel like some people are more naturally driven to exercise more and have like 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 actually will make it easier if you just keep doing it and everything. So.

Lilian Holm (25:59.353)

Mm-hmm.

Linda Bluestein, MD (26:07.867)

If people have tried to exercise or attended physical therapy, but then felt more tired or kind of more sore afterwards or resulted in more pain, what can they do?

Lilian Holm (26:20.522)

So when things go in the wrong direction, then that's a clear sign that the therapy was not properly calibrated, right? You weren't ready for what you were doing. And I often like an exercise to, especially prescribed therapeutic exercise, but really all exercise could be thought of in the same way as we think of prescription medication.

you are prescribed a medication specifically based on your needs, your symptoms and whatnot. You are prescribed a specific dose that you'll take at a specific frequency for a specific duration of time. So all exercises need to be calibrated and just like when you 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. Exercise is a little bit like that, that you can't always know precisely what's going to happen. So, if there are any negative outcomes, then we need to recalibrate. And 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 it's bothering your mind. Something is going wrong and you are either performing an exercise that is too demanding for you, 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 symptom, any negative outcome always means that something is going on and it needs to be recalibrated. Maybe we have missed what I call a weak link, right? We all have some weak links and a typical

Lilian Holm (28:34.594)

hypermobile patient has multiple, multiple weak links at the beginning of therapy. Maybe the hip is not well stabilized. Maybe the lumbopelvic area, the lower 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.

Linda Bluestein, MD (28:59.839)

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 we do have dysfunction or weak links in multiple different parts of the body and everything's connected, right? So a weak link someplace else is going to affect exercises for a different part of the body potentially.

Lilian Holm (29:25.462)

Very, very true, yeah. And I notice from what patients tell me about their previous experiences online, and even sometimes with my 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 me 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. I don't wanna hear that. There's always a better way of doing it that is specific and well suited to you in this moment.

Linda Bluestein, MD (30:12.047)

And that's a perfect lead in to a question that someone had asked online, which was 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?

Lilian Holm (30:25.086)

Mm hmm. Yeah, the muscle failure is a term that can easily be misunderstood. So in order to strengthen muscles, we do need to fatigue them. And I think that's a better concept that's going to communicate 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. But fatigue is very clearly and specifically defined as when you can no longer perform the exercise with good form.

So soon as your form starts to change and not look quite so perfect anymore, that by definition means that the muscle that 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

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.

Linda Bluestein, MD (32:02.203)

and probably reinforce suboptimal neuromuscular patterns and things like that as well.

Lilian Holm (32:08.649)

100%. Yes, exactly right.

Linda Bluestein, MD (32:13.287)

Okay. Are there other common misconceptions about physical therapy for joint hypermobility that we should be aware of?

Lilian Holm (32:22.93)

So again, I think that one of the most common ones is that physical therapy should hurt. And one of the names we're given is physical terrorist, right? And no, I'm glad to hear that. Or physical torture or something like that. So, again, leaving, leaving other specialty fields aside, maybe there's a place for

Linda Bluestein, MD (32:29.696)

Mm-hmm.

Linda Bluestein, MD (32:35.063)

Oh, I've never heard that actually.

Linda Bluestein, MD (32:43.135)

Right, right.

Lilian Holm (32:52.258)

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 that you go, you get your exercises, these are your hypermobility exercises, and now you do them. And

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. And that way you're progressing constantly, and at the end of this progression you have your long-term overall goal. And just like...

If a kid was placed in third grade instead of first grade at first, they would not be able to pick up on the material and they would fail and 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, when we try to start too far out, even start where we want to end up, then failure is the most likely option. And then we believe that we can't be helped.

So if you think of therapy as a school, the first exercises that you're given, you want to see those as your homework. Your task is to master them, get rid of them, and move on to the next exercise, which builds on the first, and 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...

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.

Linda Bluestein, MD (35:02.323)

Okay, and are there other things that patients can do in order, especially keeping in mind these common problems that people with joint hypermobility face? Are there other things that people can do in order to achieve the best possible outcome from their physical therapy besides the fabulous things that you've mentioned already?

Lilian Holm (35:23.03)

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 changes, desirable changes that move you closer to your goals. Another very important thing

is to remember to communicate very closely with your therapist. It's impossible for the therapist to kind of 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? That sort of thing. The more we know.

the more we can help you. And there are no stupid questions. So it's always better to ask. And I even tell my patients, they get an exercise app to use. So I encourage them to contact me through the app between sessions even.

so that 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 whatever your overall goal is.

Linda Bluestein, MD (36:54.547)

Okay. And we got some really great questions from people online that knew that I was gonna be interviewing you, so I'd love to go into some of those. People asked about, multiple people, asked how to reset the boom and bust cycle and how to know when to rest versus keep going with gentle exercises.

Lilian Holm (37:18.326)

The boom and the bust, yes. Well, the simple answer is just don't, just don't, 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 and 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. So just again you can use your therapist if 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, very broadly. So I do 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. 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, to pace yourself, especially if you're still at the stage where it's difficult to tolerate an upright position, for example, if what you're doing is something in the kitchen or by 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. And 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 minutes or even five 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.

Linda Bluestein, MD (39:11.326)

Bye.

Lilian Holm (39:36.594)

if it's something that you really do have to take care of.

Linda Bluestein, MD (39:45.387)

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 anxiety so that we kind of don't listen to our body's signals and if we're in pain a lot of the time, then we're just kind of so used to having kind of a low level, 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 to really be able to, as you said, avoid that boom and bust to say, okay, maybe I need to just take a little rest, let my muscles relax before I continue going on with this, like you said, work in the kitchen or whatever it is that a person is doing.

Lilian Holm (40:24.133)

Mm-hmm.

Lilian Holm (40:39.654)

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 a sympathetic nervous system overdrive in fight or flight? Because hypermobile people tend to spend a lot of time in that mode. There are so many factors that push us towards that. So go take a look in the mirror. Are your pupils really dilated?

Linda Bluestein, MD (40:53.483)

Mm-hmm.

Lilian Holm (41:05.01)

Maybe you're just in sympathetic nervous system overdrive and not really energized and ready to be super active. And another way to find out if you truly are rested and energized is to go relax, do a relaxation guided meditation or just do some deep breathing or relax your body. And if you get sleepy when you relax, if you start yawning and just feel tired, you did not, you were actually

you are just high 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 in all cylinders. And we should be spending much more time in parasympathetic nervous system mode and not always be revved up.

Linda Bluestein, MD (42:03.575)

What a fabulous point. Yes, I think that probably applies to a lot of people. Think a lot of people can probably relate to that.

Lilian Holm (42:12.859)

I would think so, yes.

Linda Bluestein, MD (42:13.347)

Okay. Another question that multiple people asked was they wanted to know what your professional opinion was about the Muldowney physical therapy protocol.

Lilian Holm (42:27.302)

Yes, that's an interesting question. So I would start out by saying that, 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 that keeps it dynamic and keeps us going in the right direction. And when it comes to the Muldowney protocol, I'm not very fond of it for a number of reasons. It's just that I look at things differently and I go about things differently. So it's not something that I would recommend. A couple of reasons would be that rather than...

doing some predetermined exercises, the same for everyone. I like to be more specific, individualized and granular. Just like you previously mentioned the faulty movement patterns, that's 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 gonna 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. So again, I think of that as finding those weak links and correcting them. And...

The other part that I don't agree with is bringing a book to your therapist and asking them to watch you perform exercises out of a book. That's a little bit like, you know, bringing an instruction manual to tell your dentist how to drill your teeth or bringing expecting someone to do surgery with a manual that you brought along. You would not trust that surgeon. And if you

Linda Bluestein, MD (44:26.519)

Mmm.

Linda Bluestein, MD (44:39.948)

Right.

Linda Bluestein, MD (44:45.631)

Right, right. Right.

Lilian Holm (44:49.502)

If you find a therapist that would agree to work that way, you have probably not found the right therapist. So I don't, the sort of one size fits all and just doesn't really, it's not a good match for how I think about things. 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 gonna take a while and we need to progress gradually and gradually 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.

And I've actually developed techniques for that myself where I don't use any force at all. 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.

Linda Bluestein, MD (46:15.095)

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 they said 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 that metrics.

Lilian Holm (46:37.238)

Mm-hmm. Great question. So we would have an overall goal. So let's say the patient's goal is to end up tolerating a specific type of physical activity.

And let's say for argument's sake that 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. Then what would happen, there's actually a very, very illogical progression to that goal. You could almost think about it as a staircase that you need to start here, take the first step, start working on

certain areas of the body that are prerequisites for the next area. So, and this actually happens to coincide with how we develop as babies. We need to have trunk stability first and then, so the first thing a baby does is maybe turn over on the floor and then they start to creep and crawl, developing stability in the shoulders and hips, and then after that they start to stand up and that's when they learn to control their knees.

and their feet, and only then do they develop fine motor control in the hands. So, and this is not random, it's for biomechanical reasons. So that same order is very much visible in physical therapy too, when we're progressing up that staircase towards that long-term goal. So how do we measure success? We want to see each and every level conquered.

So 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 lumbar pelvic area to hold your spine up. Then you need to have a stable rib cage.

Lilian Holm (48:41.498)

and your arms are not attached to your rib cage, attached to your shoulder blades. So the next step would be to develop stability and control around the shoulder blades. And then from there on, 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 would be a very, very straightforward process to make sure that we have met all of those steps. Now,

If you are starting from a very unstable place, you are of course not really feeling strong yet, right? 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 the stabilization exercise. So if you're getting a little anxious during the rehabilitative process about that,

Again, talk to the therapist and then you'll find out that you will get to the strengthening phase. And that perhaps if you feel like you want a little more exercise in your life, you need it for mental emotional reasons and just work to work on your aerobic conditioning. You could, for example, include a stationary bike, for example. So there's flexibility there. But we don't get from point A to Z.

without going through all the other stepping stones in between. And that's very, very measurable.

Linda Bluestein, MD (50:18.775)

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 various different – or you 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? That we can – five steps forward, two back, six forward, five back. But hopefully we're building.

Lilian Holm (50:43.783)

Mm-hmm.

Linda Bluestein, MD (50:48.624)

on some success.

Lilian Holm (50:51.862)

That's very true. And that's of course true throughout our life too. Things can happen, but there's a setback and then we're making a comeback again. But during those times when you're busy or traveling or what have you, illness for example, I encourage my patients to do what I call treading water. Meaning that if you're metaphorically swimming across the lake for example, 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. So I had a patient recently who was home sick with COVID for a while, and I had been seeing her for a while. So 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, right? Not dropping the ball 100%, but understandably not working on her normal level.

Linda Bluestein, MD (52:02.303)

Wow, 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 to people. Hey, I just made a comeback. So I think oftentimes we, people with EDS and HSD, we tend to get hard on ourselves and beat ourselves up for the things that we haven't accomplished and forget the things that we have. And I think in a lot of cases, we're actually very resilient because we've...

Lilian Holm (52:07.979)

Yeah.

Lilian Holm (52:12.099)

Yeah.

Linda Bluestein, MD (52:28.063)

had to overcome so many things, especially at younger ages, compared to people that have not had these problems.

Lilian Holm (52:34.938)

Absolutely. And all we just need to remember to do is to look back and say, I have faced this before and I overcame it and I will overcome it again. Definitely.

Linda Bluestein, MD (52:42.588)

Mm-hmm, right.

Linda Bluestein, MD (52:47.911)

Yeah, yeah, I think that's a great point. So what about balancing, yeah, lots of comebacks, exactly. 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 so everything just, I know part of it's neurologic, but everything just like tightened up so much. So how do you advise people with hypermobile bodies

Lilian Holm (52:50.846)

Lots of comebacks.

Lilian Holm (52:55.605)

Yeah.

Linda Bluestein, MD (53:17.375)

to balance those two things.

Lilian Holm (53:21.858)

Yeah, 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. But stretching and strengthening, they bring their own important benefits. So it's like saying, how do you balance carbohydrates and protein? Well, maybe you need both and you need them, you know.

Linda Bluestein, MD (53:32.575)

Bye.

Linda Bluestein, MD (53:37.024)

Right.

Lilian Holm (53:48.35)

on an individual basis. So if you're very physically active, you might need more carbohydrates. And in the same way, how much stretching, what you need to stretch specifically, is just determined on your individual needs, your findings, right? Some people have very, very tight hip flexors that get in the way. And 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, which in that case would be the glutes. So both are important, but they're also interdependent. So a muscle will often become tight when its opposite muscle is underactive. So all muscles in the body have

an opposite one. So if something moves you this way, there's an opposite muscle that moves you in the other direction. And we, as a general rule, 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 tends to become weak. So

Linda Bluestein, MD (55:06.871)

Oh.

Lilian Holm (55:10.506)

You can see how in those cases you might stretch one side and then you would strengthen the opposite side and that combination would give you the best results. But then if the person who's asking is thinking about conquering more range of motion, that your shoulder has been very tight and now you're regaining that mobility, then it's of course very important to work on your stability in that range. So you don't want to...

be able to do, you know, fall into the splits but not have muscle control in that position. So that's another important consideration.

Linda Bluestein, MD (55:51.811)

Okay. I'm sure you have seen this before. I certainly have, especially sometimes with young people. They end up getting so many accumulated medical problems and for a variety of reasons end up spending most of the time in bed or becoming bedbound. Of course, you don't know any one individual person 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?

Lilian Holm (56:22.21)

First, you have to have hope and a belief that it can be done. So 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. And then you start building back on your body kind of in that same logical, biomechanically determined order that we discussed previously.

Lilian Holm (56:52.164)

step exercises can be done in bed. And so 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. And then you just think about the fact that your body needs to vary gradually, both in terms of orthostatic tolerance, being able to be upright against gravity.

in terms of your mitochondrial functioning, your ability to produce energy, there's a lot of separate partial comebacks built in there that you need to work on. But again, it's not about just trying to stand up and walk off, it's, it's a, your overall goal is to get up and become mobile again, and you wanna strategize with someone who can help you about the partial steps.

along the way so you can get there.

Linda Bluestein, MD (57:55.827)

Yeah, there's probably a lot of steps in between there, 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?

Lilian Holm (58:12.108)

Mm-hmm.

Lilian Holm (58:17.906)

So again, ideally, I think that's a great example of where you can find expertise, and that's going to serve you the best. So there are physical therapists that are specialized in the treatment of scoliosis and looking for someone like that, again, in person, ideally, if not.

second best option online, that's really what you want to do. One little tidbit there that is also more common in hypermobility is that in my experience, most people with scoliosis have an unevenness in the pelvis. So if your pelvis is not straight, but it's tilted, see your pelvis as a flower pot.

and then your spine like the flower stalk, and that's going to grow now sideways. And just like the flower tries to get up to the sun, our body has very strong writing reflexes that want to get the head over the body, and now you have a scoliosis. So if you see a scoliosis developing in a kid, in someone who's still growing,

It can be very useful to have someone look at their pelvic alignment and see if there's some contributing factor there. And I've actually had patients that were still pre-pubertal and were starting to develop 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. And as I followed her through her growth spurt, through puberty, and every summer when she didn't attend physical therapy and didn't use her heel lifts, then 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. And in the end, she was able to go through

Lilian Holm (01:00:27.598)

tidbit, but for someone who's already an adult and looking for the best possible outcome there, see if you can find someone who is an expert on that.

Linda Bluestein, MD (01:00:43.227)

Okay, that's a great analogy about the pelvis and the plant and that flower pot. That makes perfectly good sense. I like that. So can you just 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.

Lilian Holm (01:01:04.902)

Mm hmm. So one of the places where you can find me is my website. And that's simply my name, Lilian Holm, one L in the middle. And there is a tab about hypermobility. And there is a document, admittedly, work in progress. But there is a document that you can download that starts with dear colleague. So it's, it's directed to a physical therapist who

may not be familiar with hypermobility disorders. And there's a brief description of what they are and how they may affect the patient. And, you know, some of the most important things to keep in mind. So that exists there. And then you can find me on Instagram as hypermobility doctor and on Facebook as well.

Linda Bluestein, MD (01:01:58.923)

Fabulous and I will definitely link all of that in the show notes so people can find that easily and last question. How can you? Mistake

Lilian Holm (01:02:10.026)

Heh.

Linda Bluestein, MD (01:02:11.039)

I will link that in the show notes so everyone can find those places very well, very easily I should say. And last question, can you tell us some of your favorite hypermobility hacks?

Lilian Holm (01:02:23.566)

Sure. How many can we list? So I would say 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. And again, you can find out where you are, perhaps best with the help of a therapist. But even if you're not having physical therapy,

Linda Bluestein, MD (01:02:28.034)

As many as you want.

Lilian Holm (01:02:53.822)

If you want to run, you need to be able to walk first. So the level that you want to achieve, that will come later. So that's something you wanna see as your long-term ultimate goal, but the starting point is where you find yourself right now. And if you've kind of 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. So you need to be, we...

Linda Bluestein, MD (01:03:22.155)

Yeah. Yep.

Lilian Holm (01:03:23.526)

we need to be humble enough to admit and recognize where we are in the moment and start working there and that way we won't risk injury. 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 so not just rushing ahead.

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 get done. So 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.

And then I want to share something that I use myself as well. So when you think about exercise, you're going to work out right now if that's what you do, or 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 that will just be too high of a threshold and it will hold you back.

So just think about the first step. So for me, for example, that would typically be hopping on 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, you've activated yourself, maybe your adrenaline levels a little higher and you've overcome that hesitancy of getting going. And now it's so much easier.

Linda Bluestein, MD (01:05:24.412)

Mm-hmm.

Lilian Holm (01:05:26.466)

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.

Linda Bluestein, MD (01:05:40.927)

That's fabulous. I find I often, even though I love my physical therapist, 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 can I attach these bands to without pulling off the doorknob and that kind of thing. So I know it's really important, but sometimes getting myself motivated to do it is hard. And so 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 gonna apply that one myself.

Lilian Holm (01:05:54.934)

Sure.

Linda Bluestein, MD (01:06:11.583)

I think those are really great tips. Okay, well, you all have been listening to Bendy Bodies with the Hypermobility MD podcast, and your guest today was Dr. Lilian Holm, and goes by Hypermobility Doctor Online. You definitely wanted 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, incredible information that I think is gonna help a lot of people really get the outcomes that they want.