Earlier this year, I was reading Fourth Wing, and right from the first few pages, I thought that the main character, Violet really sounded like my clients who had Ehlers-Danlos Syndrome, or EDS.

If you’re not familiar with the book, Fourth Wing is a fantasy romance involving dragons and magic, and it really drew me in. I can’t wait for the third book in the trilogy, which is coming out early next year, especially after what the author did at the end of the second book.

Now no spoilers, but I was really upset at what happened at the end of the second book. If you’ve read it, let me know your thoughts, but let’s keep it spoilers light, in case anybody’s still planning on reading it, but I’m very much looking forward to when it’s coming out next year.

After reading it, I knew that I wanted to make a video about EDS for this channel, both for clients or people who might be looking for massage, so they can know what the massage therapist should be thinking of people who might be thinking of seeing us, but also for the general public who might not know what EDS is. I figured that October is a great time to do it, because it’s inspired by a book about dragons and magic.

Here’s what I’m going to cover.

First, what Ehlers-Danlos Syndrome is, broadly. It’s actually quite a big syndrome. There’s 13 different types, so we’re not going to go into the details, but just generally, what is it? How it can affect someone’s life, how we adjust our sessions at the clinic, if we’re working with someone with Ehlers-Danlos Syndrome.

Lastly, I want to share something really cool that I have noticed in working with clients who have hypermobile EDS, and my theory as to why it might be happening, but just something I’ve observed.

Hi, welcome back, or welcome if you’re new. My name is Katherine. I’m the founder and principal therapist of LSM Clinic, a sport and remedial message therapy clinic in East London. In this channel, I share information about how the body works and simple self care tips that you can do to live your life and enjoy your favorite activities as close to pain free as possible.

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So in Fourth Wing, right from the beginning, we hear about how Violet, who’s the main character, sprains a joint every other week and ‘endures more pain before lunch than other dragon riders do in a week’, that her joints dislocate easily, that the joints need a lot of support by way of strapping and strength training, and she simply has some physical restrictions that nobody else deals with.

One of the things that I really loved about Fourth Wing was that EDS is never specifically mentioned, like it’s not said she has EDS. But if you’re familiar with the condition, when you reading it, you recognize the symptoms pretty early on, and the author, who also has EDS, has confirmed that Violet has EDS in Fourth Wing. And personally, I just thought it was really cool that it’s somebody who has a chronic illness which isn’t always represented in like media that we see as a main character who it’s also really clear that she’s a badass.

Now, one thing that I didn’t love in the book, but this is really more just like what you see across like fantasy and adventure books in general, so it wasn’t necessarily specific to EDS, is this pushing through pain all the time. Even though things are really painful, she just constantly shuts down the pain.

I always want people to listen to their body, but, and this is a really important, but I think it did a really good job of illustrating how the reality for a lot of people in chronic pain is that they do have to stuff down their pain on a regular basis.

I do think that there are ways that we can interface with the pain that we carry in our body when we are having chronic issues.

However, day in and day out, if you are having pain, you can’t just sit down and do nothing until it goes away.

If you’re always having like a low level pain and then it spikes to a high level pain, you do have to push it down and keep going, because you have to function right?

Obviously we try to help people get rid of as much of pain as they can. But when you have a disorder like EDS, pain is a reality. It’s something that you’re dealing with.

Although that there was a part of me that was like ‘oh, I really don’t like that. Like when she’s in pain, she just keeps going’. At the same time, that is genuinely the reality of people who have a chronic issue, they have pain and they have to keep going because they don’t really have a choice.

Let’s talk about what is Ehlers-Danlos Syndrome. Before I talk about what it is, I just really want to make clear that while I am aware of it, I double checked my research before doing this video, I have worked with clients with it, because I don’t have it, and because it is so varied, I don’t want you to take what I’m saying as like the absolute definition.

There’s a ton of variations within it, and different people’s experiences will be different. This is kind of generally what I’ve seen and what I’ve seen in my research. But obviously, like other people who have it, will have unique experiences, and you always want to listen to people who have the disease or the issue over someone who’s just viewing it from the outside.

Ehlers-Danlos Syndrome is actually a group of 13 different disorders, and it’s mainly characterized by a genetic or chronic issue with the connective tissue in the body, as in, like the connective tissue isn’t doing what it’s supposed to. 

The most common type of EDS is hypermobile EDS, which is like hypermobility, which is something we talked about, hypermobility we talked about in the last video, which I will link below (see links from video above).

There are 13 different types. I’m not going to name all 13, but just to give you a little example, there’s vascular EDS, musculo contractual EDS, and, yes, I practiced that a few times before recording this video, periodontal EDS, cardiac valvular EDS, and brittle cornea syndrome are just a few of what’s included in this group of syndrome disorders under the EDS umbrella.

In general, I’ve mostly worked with hypermobile EDS. I think I had one client who was classed as classic EDS, but mainly my frame of reference is around the hypermobility.

Now, what does it mean when we say it’s a connective tissue disorder?

Basically that means that the connective tissue in the body is not working the way that it’s supposed to. It is not supporting. There’s just something where it’s not working. I’ve had clients where their joints dislocate so easily. They just give out from under them because they have no support in their joints. I’ve had clients where they have really bad digestion problems, because it’s not like it’s not able to move through.

I just want you to think about like there is connective tissue everywhere in your body. There’s connective tissue around your muscle, in your ligaments, in your tendons, around your organs, around your digestive organs, in your blood vessels, like around your blood vessels everywhere. So you could literally have EDS affecting almost any function that happens in the body.

There’s also connective tissue in the skin, so often, people with EDS have really fragile and delicate skin, and it might bruise easily or it might get irritated easily.

Let’s just look at the symptoms from the NHS, which I’ll include the link for this below as well the symptoms for EDS include joint hypermobility, which we talked about, loose, unstable joints that dislocate easily, joint pain and clicking joints, extreme tiredness, fatigue, which I think makes sense, but it can both be from the physiological aspect of like the connective tissue around, say, your blood vessels not working the way that they’re supposed to, and also just being tired because you’re in pain all the time, skin that bruises easily, digestive problems such as heartburn and constipation, dizziness and an increased heart rate after standing up.

Problems with internal organs, such as mitral valve problems or organ prolapse problems, with bladder control, urinary incontinence.

That is a lot to deal with, and that’s not to say that every single person with EDS has every single one of those symptoms, but just to give you an idea in what you might be dealing with if your connective tissue is not working properly in various parts of your body. No wonder people with EDS are often living in chronic and debilitating pain.

Now, before I talk about how we support our clients who have EDS in clinic, in sessions, and the one thing that I’ve observed that I think is super interesting about working with EDS clients. I want to talk to any of you watching who have friends or family or coworker or acquaintance or you know somebody with EDS.

One of the things about having a chronic illness is that it is very isolating and like because nobody understands what it’s like. I have a plan to make a whole video about living with chronic pain and chronic illness, so that people can have a better understanding.

But just specifically for the purposes of this video, if you know someone with EDS, if you work with someone with EDS, if you’re aware of someone like there’s someone in your life, I just want you to think about how they are existing.

They’re probably in low to high levels of pain all the time, all the time. You might not be able to tell because it’s not a visible thing. Some people with EDS are going to be in wheelchairs or have mobility devices. But not everybody does. They’re used to it, so they are used to having to function. They also have probably gotten used to people getting tired of them complaining about being in pain, so they’ve learned to just keep their mouth shut, shut and keep going.

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I want you to imagine the extra energy that it would take you to walk around if your joints were not supported naturally by the ligaments in your body, if they could dislocate easily, if your digestion didn’t work the way that it should, if like the valves in your heart and the tissue around your blood vessels wasn’t working. So every single movement,even the ones that seems super easy to you, may be way more effort for someone with EDS thinking about like just walking around and, you know, moving from place to place, going up and down stairs, just like and the thing is, it is so easy to forget, especially when it’s not visible what someone might be going through. But I just wanted to insert that little bit so that if you are around someone who has this, you can just be a little bit more mindful and compassionate, but maybe why they’re tired, maybe why they can’t do the same things as you can why their energy is up and down, that kind of thing.

So let’s talk about how we adjust our sessions. So first of all, we don’t do stretching with people with EDS, hypermobile EDS. We do not do stretching. There are quite a few massage techniques that involve stretching, that are stretch based, like muscle energy techniques, just passive stretching, some range of movement stuff, and in general, we will avoid doing those. There may be some exceptions for very small like range of movement assessments, but we don’t do stretching because a lot of times things are already stretched, right? They already are loose in a lot of places. And we don’t want to just globally stretch the tissue. Stretching releases and massage are often not helpful and can be harmful because it will pull on already stretched or loose connective tissue. There is a massage technique called attraction, which is gently pulling on a joint. So we might do that on like a neck, sometimes you doubt on the arms and where you have good end legs and where you have good support in your ligaments. It’s a really nice technique. It kind of opens up the joint. It can help with mobility. It’s lovely, not good for people with EDS or Hypermobility syndrome.

Side note, Hypermobility syndrome disorder and hypermobile EDS. Some places you see will say that they’re two different things, that they’re two separate syndromes. Some people believe that Hypermobility syndrome disorder, I think that’s what agency stands for. Some people believe that extreme hypermobility is part of EDs, and it’s like on a spectrum. And other people think it’s separate. So for the purposes of today, if I’m talking about Hypermobility syndrome, I’m talking about it in the idea that it’s part of the hypermobile EDS spectrum. So yeah, so if you do attraction on someone who has EDS that could dislocate their joint and that includes moving the body around by pulling on a part of the body that is far away from what we’re moving. So for example, we might need to bend the hip when we’re doing a specific position, and we know we can bend the hip safely, but we’re not going to grab the ankle to move it or below the knee. We’re going to probably do above the knee so that we are only interfacing with the joint that we’re trying to work with, and not accidentally pulling on joints down the chain, because we know that with EDS, you can have very sensitive skin, and it can be kind of like tissue papery or easily irritated. We will assess that in a session, I found that it really varies from person to person. Some people you can do like the normal kind of movement massage techniques of like effleurage and maybe some deep tissue movement, and it’s fine. And for other people, it’ll be irritating. So we’ll work with this specific person to make sure what feels comfortable on their skin, as far as any kind of. Movement based massage techniques, because for some people, that movement can be really like rhythmic and calming and nice for the nervous system, but obviously, if the skin is really delicate, then it’s going to be irritating.

What we do do in a session with EDS is we really focus on pointed, specific, targeted pressure on muscles that are probably compensating for the joint. So what that means is that, so let’s say that somebody has elbow pain, and we want to just release above and below the elbow, where the muscle might be tight because it’s compensating. So we’ll just do kind of holding techniques to release the muscle, because that allows us to be really specific, and then we’re not like doing loads of stuff to other muscles. One thing that we do emphasize with people is, what is ideal range of movement? So it’ll be like, try not to let yourself straighten past this point. Try not to let yourself turn past this point. We’ll show people like this is kind of within your ideal range of movement. So start to think about keeping yourself in this range, like I talked about in the hypermobile video last week. And we really emphasize with our EDS clients that strength and support is really important, especially for postural muscles. Now we can do some of that. We can do, like glute activation and lower ab activation, but we’ll usually recommend that they either go to a Pilates class that is very specific, focused on small deliberate movements to target the posture, so not like really big stretches and big movements, because that’s not going to be great for someone with EDS, or you find a personal trainer who’s aware of it, who can work with you specifically, because that strength can really help.

When you have strength in the correct muscles to support the joints, you often don’t get as much tension around the joints. That’s like the tension that will cause pain, not all the time, but it can help. So like, if I wanted to sum all of that up about how we help people with EDS, we are aware of my what might set them off or might cause problems. We don’t do techniques that will pull or tug on the joints or pull or tug on any connective tissue. Really. We’re very targeted with where we’re releasing specifically, and we also really make sure not to over release, right? So you never it’s not a good idea in general to work a muscle so much that it’s like overworked, but especially not with uhh Stanley syndrome. Now let me tell you what the cool thing is that I found.

I know this is a long video, so I’ll be putting time stamps in it. So one of the really cool things that I found working with EDS clients is that they will often come in and they will have a lot of pain, and they will have a lot of range of movement. So like most of the time, if somebody has neck pain, for example, they’ll be like, Oh, I’m stuck. I’m stuck. I can’t go any further. They have pain. Someone with early downloads will often have a ton of pain in their neck, as an example, but be able to, like, go fully back this way, and fully back this way, and it’s just like, that’s like, actually more range of movement than you should have, even if you don’t have neck tension. And this, you know, that’s because of the connective tissue, right?

We can say the same things with the arms, like, well, if you have really bad shoulder pain, but they have beautiful range of motion, almost to the point of maybe going further than is ideal, and yet still have this pain. And so the cool thing, or the interesting thing, I think, that happens, that I’ve noticed, is that when we then work on wherever the pain is, where they have this extreme range of motion, that we can reduce the pain when we’re working on these muscles in this targeted way, like I talked about, but also it reduces their range of movement. Now this is opposite to what happens to someone who doesn’t have extreme hypermobility or EDS. When we release someone’s muscles, they get more range of movement, right? They get more flexibility. They get more mobility. It’s better, but with someone who has hypermobility, extreme hypermobility, hypermobile EDS, when I release their tissue, they lose range of movement. And the reason that I think it’s so cool is because it makes me think that somehow, by stimulating the tissue in the way we do, we’re encouraging it to be more structurally supportive, to not allow for that excessive range of movement. And we do see sometimes in massage where we release something and the muscle functions better. And I don’t know if the same thing happens with fascia. Which fascia is a type of connective tissue, if releasing fascia helps it to be more supportive, but it’s actually become one of my favorite things.

Now, if somebody comes in and they either have EDS or extreme hypermobility, and I do the release, I love seeing. Reduced range of movement, because it tells me that that joint is getting more supportive. And that’s just something I think is super interesting that I have only seen really with like EDS clients or clients who are so hypermobile that I would suspect that they actually have EDS but haven’t been diagnosed, because that’s one of the things you’ll find on the EDS website. They think that it’s very under diagnosed. So that’s the cool thing. This has been a long video. So thank you so much. If you’re here at the end or longer than usual, I hope you enjoyed it. I hope that if you’re not familiar with EDS, that you learned something. And I hope if you have EDS, it gave you some kind of insight about, like, what you should look for in a massage therapist, or kind of things to think about when you’re working with yourself. I also have a video on hypermobility that I’ll link below that talks a little bit more about how restricting your range of movement can help protect your joints. If you have hypermobility again, please Like this video if you enjoyed it. Subscribe if you want to see more. Share if you know someone you’d like. It really helps me. Thank you. And the channel, it helps me. It’s very helpful to me. It helps me get this information out to more people. And you know, our goal is to have as many people living pain free or in less pain as possible. So thank you so much for your time. I hope you have a great day, and I’ll see you in the next one you.