Fear, Pain & Hope: Movement with Hypermobility

How we think about movement when living with hypermobiliy is a subject I’m super interested in, so I’m delighted to have had the opportunity to chat with Joint Hypermobility & Ehlers-Danlos Syndrome Movement Therapist, Jeannie Di Bon.

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Natasha: Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman.

This week we’re talking about something I have a very complicated relationship with…movement. Before I tell you about our guest, please indulge a short illustrative story.

You know that scene in The Holiday when Cameron Diaz, fresh off the plane from LA, is in a cab driving through the perfectly snowy and picturesque English countryside, is told that she’d have to get out and walk if she wants to make it to the cottage she swapped with Kate Winslet because they were both having major “shitty men” issues?

Out of the cab she pops, all perfectly blowdried hair and high heeled boots, dragging a suitcase down a charming little side road, slipping dramatically across the ice.

Yeah, so…I watch that scene from behind a cushion.

What about her poor knees! Surely that’s so dangerous?! She could slip and dislocate something!

I used to have to literally look away from the tv during scenes like this. My very own horror movie that I hadn’t signed up for.

I’d grab my own knees and sharply inhale. There’d be a sinking feeling in my chest, and my heart would start beating fast. I’d make a self-depreciating joke about people with healthy, functioning knees that stay where they’re supposed to…and then the moment would be over, Sebastian would tell me I could come out from behind the cushion, and we’d continue watching the film.

Something similar happens when I’m in the bathroom or kitchen and there’s a small wet patch on the floor and my foot starts to slip. I feel a rising sense of panic and call for help, a pair of boots – anything to make sure that I felt safe.

Now, don’t get me wrong, I am 100% fully aware of how embarrassingly dramatic and unnecessary this sounds.

But why am I scared to be near water? Why do I have such a seemingly-oversized reaction to even seeing someone else slipping on something wet or icy on the bloody television?!

What if I told you that the majority of my knee dislocations happened when I slipped on something wet? A puddle, a booze covered bar floor, the wet floor of the security room at the Holocaust Museum in Paris as I was reaching to put my bag through the scanner…not my finest moment, really.

And then there are, of course, the drier things: a hole in the sand at the beach, a piece of paper on the floor.

What they all have in common is slipping, with my foot going one way and my knee going the other.

And even thinking about slipping, thinking about those past knee dislocations is enough to remind me of that very specific feeling and to make me grab for my knee and feel physically sick.

Which means that with over 20 years of knee-related nonsense, my reaction is in part a subconscious protective mechanism based on decades of my knee sliding where it isn’t supposed to go – whether it be the “big dislocations” or the subluxations, pops and incredible pain that I have experienced throughout my life.

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When you experience mysterious pains no-one understands, and when your joints…suddenly decide to go on holiday for who knows what reason, you’re left pushing through and doing the best you can, whilst not having the slightest bloody clue what is happening in your body, or what to do about it.

Besides the pain itself, the fear becomes palpable. Who knows what will be the next thing to cause an issue? What seemingly small thing that others can shrug off in an instant can become dangerous to your body? It seemed there’d be part of my body where I was fine, and then something would happen and it would never go back to “normal” again.

Once I had my diagnosis, and didn’t have the most positive experience with the specialist physiotherapy, I didn’t know what to do. I thought “physiotherapy didn’t work for me”.

I was getting more injured, more fatigued. My joints were sliding out more than ever.

I was always scared to go out in public (a combination of my EDS and the fact that I’m 4 foot 9 and people have a habit of walking into me anyway) and my anxiety levels shot through the roof.

It got to the point where, to my mind, all movement was dangerous. After all, my formative experiences up until that point proved that to be true, I was only getting worse – and from what I had read on the Facebook groups, that seemed like an inevitable future.

Without the help that I clearly needed, I did what I thought was the safest thing of all: I took to my bed and tried to avoid being around anything or anyone that could cause more damage.

I was scared all the time. I was scared turning in bed, I was scared cooking, I was scared going out for a walk.

And it’s a vicious cycle, isn’t it? Because from everything I’ve read and everything I now know from my own experience – strengthening and movement are one of the single most important tools I have to manage my EDS.

But pain and injuries can lead to fear, lack of (or inappropriate care) can lead to worsening pain and injuries, which leads to frustration and hopelessness, which leads to more fear…and so the cycle continues until we’re left in a position, both physically and mentally, that could have been avoided if only appropriate care were provided.

Which brings us back to my outsized reactions to watching The Holiday.

My brain had learned to subconsciously overcompensate over the years in a bid to protect me from the danger of my own body.

And whilst those mechanisms developed for very legitimate reasons and probably helped me at one point, it got to the point where they weren’t anymore.

In fact, when I was able to get appropriate care, about 50% of the work we did was on making me feel psychologically safe enough to do things, and re-teaching my body that it does, in fact, have the potential to move in a safe (or at least safer) way. The rest of it was the long, slow, grinding work of undoing years of decline. Of working on stability and strength – something I didn’t think would be possible.

All of this is a complex and difficult topic, and it’s why I’m delighted to be joined by my guest, Joint Hypermobility & Ehlers-Danlos Syndrome Movement Therapist, Jeannie Di Bon who I’ve worked with a couple of times in the past and I personally found her approach to the hypermobile body so refreshing.

Today you’ll hear our wide-ranging and personal discussion about movement and hypermobility. Not only does Jeanie have mountains of knowledge and expertise in this field – she just gets it.

Jeannie also has EDS but she wasn’t diagnosed until she was in her 40’s…

Jeannie: Well, unbeknown to me until about four years ago, 2018, yeah four years ago, I also have hEDS, so Hypermobile EDS. I also have PoTS. I have MCAS and I have chronic fatigue, which is a lot to discover over the course of… from the age of 48 onwards, I’ve kind of lived my whole life not knowing any of this, but obviously having lots of symptoms and not getting the help I needed like many of your listeners probably, trying to get answers, knowing you don’t feel quite right but going to see lots of different doctors, lots of specialists, having multiple issues.
So I’ve got mitral valve prolapse. I’ve had pneumonia many times, I’ve had pain. I had pain for most of my life, all sorts of things that we now look back and go, “Oh, that makes sense now.” All the migraines, pretty much since the age of 20, my chronic pain started, my IBS started along with my chronic pain when I was 12.

So all these things we now go, “Oh, okay. That’s sort of EDS,” but yeah, I just didn’t know until… So I started working with this community. A physio started sending me clients with EDS and I was like, “Oh, I’m kind of like that. That’s familiar, that’s familiar.” And so I kind of had an inkling that there was something going on, but I wasn’t officially diagnosed until 2018.
So yeah, personally I feel I can use that personal experience. So when my clients come to see me and they’ve been through the same journey of only just getting diagnosed and all the stress and anxiety that goes with that, I really get it because I’ve been there as well. So I think I can bring that side of it to working with people, and people always say to me, “Gosh, it’s so nice to just talk to someone who gets it,” because how many times have we been to someone who doesn’t get it? And it’s like-

Natasha: I’m nodding vigorously here because I can definitely relate to that. Just for transparency’s sake, I have had a few sessions with Jeannie and we have spoken in the past. And I think one of the things that I had definitely experienced growing up before I had my EDS diagnosis and even after that was that there was no real joined up care and everything still seemed to be very joint specific. And my life, my fears, my reactions to my body, anything to do with… The scary thing. Honestly, the scary things that my body was doing that I didn’t understand was not really taken into consideration.

And like so many people with EDS, I noticed that it got worse and worse and worse through my teens, through my 20s, and eventually it just felt like every joint was… It wasn’t every joint, but it felt like every joint in my body was subluxing. I became absolutely terrified of my body and I had such a drastic deterioration, but I had been through what at the time was billed as specialist physiotherapy. I had been in some of those top clinics.
And so I was left feeling like if these things didn’t work for me, then it just meant my entire life was going to be deterioration, and my entire life meant that by the time I was in my mid-20s, I’d be basically confined to my bed, barely able to move. And I think this is where a lot of the conversations around EDS and pain and disability and deterioration can be so interesting because there’s a quote, and I think I’ve mentioned this before, but I don’t remember the specific quote, but Professor Graham who diagnosed me said that, “EDS doesn’t have to be as debilitating as it is.”

And I think that is what I found so interesting about you and your work over the years, is the way that you approach, I suppose, rehabilitation for want of a better word, I suppose, rehabilitation for EDS and how we conceptualise our bodies with this very weird condition that can manifest in so many different ways. So I’d love to talk to you just about that process and about how somebody coming in with EDS, whether they’re new to a diagnosis or they’ve been living with EDS for a very long time. How can we think about our bodies and how can we think about the potential of making improvements?
Because my PT, who is absolutely brilliant, we were having a conversation a few months ago. She said to me, “When we met, you’d given up because you said, ‘I don’t know if this is going to work but I’m going to try. I don’t think it’s going to work.'” And I said I mustn’t have given up because I wouldn’t have seen her if I’d have given up. I wouldn’t have seen her in the first place but I know I had definitely got to that point where I was absolutely terrified, and I didn’t believe that there was any point where I could make improvement. So yeah, I’d love to get your thoughts on all of that?

Jeannie: Yeah. And what you’re saying, I hear all the time as well, you’re saying a lot of things. Is there hope? Shall I just give up? And so many people are actually… Do you know what the shocking thing is? So many people are told, “Well, there’s nothing that can be done really.” You’ve got these conditions.” Someone told me today actually, I saw a client this morning. She was told, “Well, good luck. You’ve got EDS. There’s not really much you can do.”
I’m horrified. I’m absolutely horrified because I always say, I don’t care where someone is today. If they’re bedbound and several of my clients are bedbound or if they’re mobility wheelchair users or wherever, or if they’re more functional, doesn’t matter where you are. There’s always something we can do. Always, always. So being told, “Good luck and off you go,” isn’t really helping.

So like you say, you are kind of left floundering. What do I do? That I’ve been told, “Just get on with my life,” but I don’t know how to get on with my life anymore. And like you said, I’m scared. My joints are popping out, I’m in pain. I don’t know whether I can do the physiotherapy. I don’t know whether I can… whatever it might be. People are scared.
So oftentimes people come to me and it’s not just the physical that I’m dealing with because I do have people who are scared of movement, who have had terrible experiences in the past and they’re looking for some hope. And I really believe I give that to people because this is what I do. I’ve been there as well, myself. But in terms of what I do differently, you touched on it. A lot of the work out there is very joint specific, which we need.

Obviously, if people are subluxing their shoulders or hips or whatever, but at the same time, you need to put that person back together as a whole person, an emotional person, a psychological person, as a physical person. They’re not just a shoulder joint. You can’t. And the way I look at it is I call my method the integral movement method, because I want to see the whole being. I want to see how everything is impacting that person. And where does that individual person need to start? What do we need to start with? Do we just need to talk? Do we need to work on breath? Are they a little bit further along? Do we need to do some stability work?
Who knows? It’s going to be different for everyone, but yeah, it’s a very complex condition for us and it needs to be looked at as a whole picture. That’s just my opinion.

Natasha: I think the fear thing is such an interesting topic to unpack because I understand that there is a lot of hesitation for people to talk about the fear because they fear that they will be blamed for not doing something because they have an irrational fear. I think one of the most popular things I ever wrote was where I mentioned I’m scared of wet floors because the majority of the times I’ve dislocated my knee, I have slipped on a wet patch on the floor.
And even now, if there is a wet patch in the kitchen, I panickly look around for something to mop it up before I can take my foot off in case I… And I have worked so hard on not literally going, “gasp” and fully panicking. So that fear has come from a really legitimate place. It is my body trying to protect me from something that has been very painful, that has happened since I was 11. However, my brain is overreacting because it’s not unsafe every single time, and I think there is a nuance in that conversation that really needs to be had.
And I’m curious how you approach these types of topics with people because it is so emotionally sensitive and you don’t want people to feel as if you’re saying you are not moving because you are being irrationally scared, when actually those fears are there for a rational reason.

Jeannie: Absolutely. The fears are real. The fears are absolutely real. And like you said, your brain is there to protect you. The main job of your brain is to make sure you survive. So it’s going to do whatever it can to make sure you survive, but our brain can also get into patterns that aren’t serving us well. And so yeah, of course, if someone comes to see me and they’re fearful of a certain thing, it’s about understanding that.
A lot of people are made to feel guilty because they haven’t done their exercises or they’re not good enough to do their exercises. Making someone feel bad isn’t going to help. It’s just going to increase their stress levels, increase their anxiety levels, and people give up because why should I do it if I’m made to feel bad for not doing my exercises? So I think what I do, which is very different to maybe some people is I spend a lot of time helping people feel safe, whatever that means to that individual, because if the person doesn’t feel safe, so for you, for example, in your kitchen, on your wet floor, what can we do to help your brain feel safe about that? What do we need to put in place for you to feel safe?
And it’s the same. When people come to my studio, what does this person need right now to help them feel a little bit safer about working with me, about trusting me? So that we can start to maybe move, but they have to feel safe. That is so, so key because if I just say, “Right, come on, don’t be silly. Let’s just start moving.” That’s not going to work. That’s just not going to work.

Natasha: And how do you go about that when you first start seeing somebody? What does making somebody feel safe look like when… And again, I’m just going to use myself as an example. I stopped physiotherapy because physiotherapy made me worse, and actually no, a physio friend of mine told me this is not necessarily the best way of thinking about it. The specific physiotherapy tools and techniques I was being told to do were not helpful for me at that moment in time, because I think we so often will have one thing that we can try. And when that doesn’t work for us, we say that the entire thing is bad.
So I don’t want to feed into that but I was obviously… I had become so scared of any type of movement. I had been so scared of getting worse because that’s all I had known. How does somebody who feels like that even start being able to think about feeling safe and starting to feel ready to even think about approaching a movement based method?

Jeannie: So the first two elements of my method are breathing and relaxation, and I’ve always said I can’t teach someone to move if the brain isn’t on board. So you’ve got to get the brain on board first, before we even start doing movement. So oftentimes, my first session with people doesn’t even involve any movement. We are literally just again, talking, putting things out there, getting that relationship being built.
But then a lot of the times just getting them in a safe position, which would be for most people, lying supine, on the ground, on the bed, feeling the support, feeling the support of the ground, feeling their body actually feeling supported from underneath, and then we go from there really. So the breathing patterns are really, really important in helping someone feel safe because if you don’t feel safe, you’re probably going to have shallow breathing. You’re going to be breathing up in your upper chest. Your shoulders are going to be up to your ears. You’re going to have jaw tension. Your body will tell me an awful lot. When I touch someone’s tissue, it tells me an awful lot.
So I’m sensing, I use tactile. Obviously on Zoom, I have a lot of clients on Zoom, I can’t do the tactile. So I’ve got very good at seeing where people are holding tension. So yeah, it’s a lot to do with just tapping into that. Someone’s posture is telling you an awful lot about whether they feel safe, whether they’re stuck in a sort of a fight or flight position. So if someone walks in and they’re stuck in this fight or flight position and it happens, what can I do to help them come out of that fight or flight?
And typically we are going to start with the breath. It’s so important. I call it the thermometer. Your breathing will tell me so much about how you are feeling and what’s going on for you inside. So we start there, we start with relaxation and we see… I have people bursting into tears on my table because there’s a lot of pent up emotion and stress and that’s fine. Let’s get it out. Better to have it out than store all that inside, and that’s all part of the healing. There is a certain amount of healing that we have to go through.
In a sense, it’s a very lovely process. I think it’s where the magic happens because you literally can feel someone’s tissue change under your fingertips as you feel that muscular tension drop away from them and they do start to feel safe, and I just think that’s wonderful to be able to help someone do that.

Natasha: One of the things that I remember when we had our first session together is I was lying on the floor… There’s two things that I really took away from that. One, I was lying on the floor and breathing and I was a trained singer. So in theory, I know how to breathe, but I think you said that I have the standard or the really typical EDS muscle tension around there that was preventing me from breathing properly. I’ve been so mindful of that since, because it’s really interesting that even though in theory I know how to breathe, I’ve been trained how to breathe, there were muscular things that were preventing me from doing that.
And then the other thing which I think is the biggest thing that I took away, just lying on the floor, I realised how much I was holding tension and how quickly that tension just comes back. So I’d love to talk to you about just what is the process of learning to physically relax your body in a way that feels safe? Because I think when I first lay down on the floor and then you told me to pet, you said, “Okay, lie down in a relaxed way.” I was like, “I am.” And you’re like, “Okay, now let’s actually go through your body,” and I was probably tensing like 60% of my body.
So how do we go about starting to think about where we hold tension in our body and how we can really gently and safely start learning how to physically relax? Because also, I suppose that’s hard if you’ve got EDS. And one of the main things that we do is constantly trying to hold our joints in place, especially if we don’t have the muscles to support them. So that’s such a natural thing for us to do.

Jeannie: I know. I call that full stability, that sort of bracing, guarding pattern that we all do. Typically, like you said, a lot of people around the diaphragm holding themselves, they use their diaphragm as a stabilising muscle, which obviously that’s not what it’s designed to do, but that I was one of those as well. So how do we actually get in touch? The first thing is actually recognising. Like you said, we like… We lay on the ground. And I said to you, “Let’s just settle and get relaxed.” And you were like, “Well, I am relaxed.”
For many people, we don’t know that we even hold these tension patterns anymore because they’ve become so habitual. I was doing them since I was 12. So for me, I didn’t know any different. That’s how I held myself, my whole body intention. I had no idea there was another option. Actually saying to someone, putting your hands on and saying, “Look, can you fill my hand on your shoulder? Do you think you could let that just soften a little bit?” People go, “Oh my goodness. I didn’t know I was even doing that. Or I didn’t know I’m holding my breath, or I didn’t know I was clenching my abdomen.” So many different things.
So the first step is bringing someone’s awareness to it. So when you are aware that you grip your diaphragm, you can go, “Oh, I’m doing that thing again. Hold on a minute. Let’s just let it go.” And so that’s the first step, and like with anything, the more you do it, it’s not going to happen like that. So just the body will go, “Oh no, we do it this way.” So it will snap back and go, “What have you done? Just grip!” Of course, it will. It’s not going to give up overnight, but the more you practice it, the more you soften, the more you breathe, the more you become aware, you start to reprogram yourself. So you start changing your patterns. So I call them tension patterns, holding patterns. We all have them. Everyone has different patterns. Until you’re aware of your particular pattern, you’re not going to be able to change it because that’s normal for you.
So what I help people do is recognise and sense their holding patterns. Then they can let those go. And then you replace those with new functional, healthy stability, strength, whatever you want to call it. We replace them with new patterns. Then you’ve totally changed someone’s whole approach to movement.

Natasha: We’ve kind of covered the learning to feel safe or the starting points of learning to feel safe, and I will just say I’m about five years into my experience with this, and I still have things around safety that come up all the time. So it definitely isn’t something that changes overnight. And it is something like, as you said, you were 12. I was 11 when I had my first injury, but my pain started when I was nine. So it’s my entire memory of being a human.
I’d love to discuss the process of learning how to start moving safely and how to get into stability, strength, into whatever we’re talking about when we’re just talking about more movement. One of the things that I definitely experienced was that I was told that I needed to keep as active as possible, but I wasn’t taught how to do that safely. So I ended up getting more injured and I became more fearful, and it wasn’t safe for me because my body was not in the right state to be moving.
And so a lot of people do not have that support. And for a really long time, I’ve said, I know I would not be where I am today without my PT. I have had someone working with me. A good 50% of what we do has been about making me feel safe and helping me adjust and adapt to what I’m capable of doing on any given day. And I want to talk about fatigue in a bit, but just in terms of somebody that’s listening that wants to get started and wants to think about movement, how can they do that in a way that is safe and sustainable and how should they be thinking about that?

Jeannie: So I’m going to use my Zebra Club, which is my online program as an example, because there, we have lots and lots of members who have been through exactly this story. And we’ve kind of figured out the secret to this. Think of this as a big research project, what we’ve discovered, and it’s what my method… Again, we start with breathing and relaxation, to get stronger, which ultimately we all want, and we need, we do need muscular strength. We do need muscular tone to help us keep our joints supported. Of course, we do but what we’ve discovered is that you have to start with the gentle.
So we call it go low, go slow. So start and people say, “Oh, how is this going to help? I want to get on and start doing the weights. I’ve been told I need to do weights.”
No, you’ve got to be patient and you’ve got to go through this period of again, the safety, the settling, letting your bones get into the right alignment because of course, there’s no point trying to strengthen something that’s not even in the right place. So if people’s shoulders are up to their ears or their arm bone is presenting forward and they’re giving weights to do or band exercises to do, you’re strengthening something in the wrong place. It’s going to hurt and it’s not stable.
So we’ve got to spend time working on that alignment, settling the bones, building body awareness. Once you’ve got that, and of course, everyone will take different times to do that, but once you’ve got that, people find they’re able to then move on and start doing slightly… I call them moderate classes. So we have gentle, moderate. So people are able to start doing more moderate things, which start to involve the stability and the strength.
They’ve got such a better body awareness by that point, that they can do it and not get injured because I think we get injured because as we know, we lack proprioception, we lack joint control. So we tend to go end of range. We throw our limbs about. We’re not really present. We’re not really aware. So people have done so much by then on the gentle stuff that becoming aware of themselves that they do know, “Oh, I shouldn’t go that far or I can control my hip joints or I can do this.” They’re so much more confident and it works.
Find your baseline. Like you said, you’re told to do lots and lots and keep active as possible. Actually, some of my clients can only do one or two reps of an exercise and that’s okay. That’s really important that don’t put pressure on yourself to feel, “I should be doing 20. I should be doing 10 sets of whatever.” That’s not the case. If your baseline is two repetitions and you can do that with maintaining safety in yourself, not getting injured, not having a flare up, then that is brilliant. That’s your baseline. And from a safe baseline, you can add one more rep and the following week you can add another rep, and so on.
And that’s how you build a safe movement plan that doesn’t result in the boom and bust that so many of us go through because we try so hard, because we like to, we are people I think who want to do really well and we try so hard, but then we do too much, we flare up, we go down again and then it is so much harder to get going again. So I prefer to have a curve that is very, very gentle, but it’s heading in the right direction. And that’s how we do the safe, progressive movements.

Natasha: And one of the things I think is really important as well is adapting movements for the specific person. So there are a couple of videos of yours where there’re certain movements where the arms are, that for me, with where my body is right now, I can’t do them and that causes me more pain. So I adapt them in a way that is safe for me, but that is something that I had to learn how to do.
So I think whether it’s your stuff or finding things online or whatever we are doing, I think one of the really important skills for somebody with bodies like ours is really understanding what to adapt, when to adapt, and how to adapt. So I was wondering if you could talk a little bit about that process of how people can become aware of the adaptations that they need to make and how they can figure out what to do if they don’t have that kind of one-on-one support?

Jeannie: Like you say, on my YouTube channel, people often write in the comments, “Is it okay if I… I can’t do it like that. Is it okay if I do it like this?” And I’m like, absolutely. And I think that’s great. Someone’s recognised, actually like you say, “I can’t lift my arm or I can’t stand or I can’t do…” Whatever it is. Absolutely. I think the most important thing is that… So if you see a video online, whoever’s it is, and you think, “Actually, I shouldn’t really be doing that. That’s going to hurt,” but you do it anyway because you feel, “Well, they’re doing it. Maybe I need to follow the video otherwise it’s my fault.” Absolutely not. Don’t do anything that doesn’t feel right for you.
If anything increases your pain or makes you feel worse or unsafe, don’t do it. If you are looking at it saying, “Well actually, I could do a bit of that. And if I bent my arm” that’s absolutely fine. Listen to your body. Yeah. Don’t sort of push through. Never push through. Just say, “Okay, I can’t do it standing, but I’m going to sit and maybe I can do the exercises seated,” or a lot of people can’t weight bear on their hands and wrists in a quadruped position. That’s fine. We can raise your arms up on a yoga block and you can put your forearms. You can put your hands on a chair instead, so you’ve got less pressure through your wrist.
It really doesn’t matter, but please, please do adapt. Don’t feel the pressure to perform just because you’ve seen someone online able to do it. Okay, because we are all different. We’ve all got different tissue, different tolerances. So absolutely.

Natasha: You said, “Don’t push through and be really aware of your pain.” One of the things that made me think about is understanding good versus bad pain, because I feel like especially at the beginning, even if it’s not pushing through, I think if you are doing anything that is new or a bit scary for your body, that is going to be… You are going to feel that.
How can people tell the difference between what is an expected pain and an expected pushback versus something that is a bad pain? And I’m very sensitive to this as a topic because I remember saying to a physiotherapist once, “I can’t do this exercise because it will injure me.” I could tell that it was an unsafe exercise for me. And she basically said to me, “You just don’t want to do the exercise,” and I dislocated my knee that evening and I went back to see her.
And I was like, “This is your fault, because you made me do this.” And it was one of those things where I was very aware that specific movement was something that I was not physically capable of safely doing at that time. But there are other things where, for example, this is before the pandemic, I was relearning how to walk up the stairs safely. And there were movements with that, that my PT had to break down to such an extent or almost trick me by having me do a different movement that was the same functional thing.
And she was like, “You’ve just done it.” I was like, “Oh, I didn’t realise.” And so there’s that kind of what is actually unsafe and what is kind of scary but safe or just a new movement that would hurt anyone because they’re using a muscle that they haven’t used in a decade. How do we kind of go about navigating that?

Jeannie: Yeah. That’s a tricky one and I always do reassure people, it is okay to feel your muscles working. So like you say, you’re doing a new exercise, whether you’ve got EDS or not, most people are going to wake up the next day and go, “Oh, my glutes hurt or I can feel…” That would be normal. Okay. So there’s nothing wrong with feeling your muscles but if you are doing an exercise that you have that sharp sort of pain that takes your breath away, that real… That’s probably not right. Okay.
So we need to learn the difference between muscles working, which is normal, and having some soreness the next day or maybe the day after. Some people are two days later, but if someone’s doing an exercise and they say, “Actually, that’s made me feel really weird or I feel really funny or I get a really sharp, horrible pain.” I’d be like, “Okay, let’s leave that one. That we are not quite ready for that one.” Okay. So yeah. And again, everyone’s going to be different and everyone’s got different pain tolerance levels.
Okay. But yeah, avoid anything that kind of is taking your breath away. Sharp, horrible pains, because that’s probably not quite right for you at this time.

Natasha: Yeah. That’s a good way of thinking about it. I have a really good instinct with that now, where I’ll start doing something. I’ll just say no. And then we just have to move on from it.
One of the things that I also wanted to talk to you about is a bit of a thorny issue in the community sometimes I think, but it’s deconditioning and the role of deconditioning.
One of the things that I have been thinking about a lot recently is I had many, many years in bed. So on top of all of the things with my joints getting worse and my fears and all of those things combined, I physically wasn’t really moving at all. And I’d love to discuss the role of deconditioning. I understand it can be a tricky topic to discuss because deconditioning, like a lot of other things can just be thrown at people. And they’re told that, that is the reason that they’re not well and that is the reason that something has happened when obviously there’s another reason for it.
But how do you conceptualise deconditioning? And how do you talk about that with your clients?

Jeannie: I did do a little video on this, on my YouTube channel as well. If anyone wants to see it, we did a series with The EDS Society. That was one of the questions they got asked and they asked me to talk about it. What is deconditioning?
So it is a thing that exists. It does happen. But like you say, that might not be the only reason that somebody doesn’t feel well. If you’ve got PoTS, if you’ve got fatigue, if you’ve got Mast Cells, they can all make you feel very unwell.
So we can’t put everything in the camp of deconditioning, but what we do know is that it’s important that we try to avoid deconditioning. We do know that having good postural tone, good muscular tone helps support the body, obviously helps support the joints and the blood vessels and makes us more functional. And if we let that… The more deconditioned we become, the harder, obviously it’s going to be for people to get back.
Okay. So that’s why I like it when people come to see me with their sort of teenage children or young adults come because the sooner we can start working a body, the better, so that they don’t… We’ve talked about, I see many people who are unfortunately in bed and we are building up from the ground up very simple exercises, but we are trying to build that muscular tone again because it is so important.
So yeah, it’s a tricky one, but you can definitely come back from it. But yeah, I understand what you’re saying. We can’t make everything about the deconditioning, but it does have to be part of our management plan, and that’s what I do with people. I help people start to feel, like we talked about, feeling safe, start moving again so they can start building that muscle tone.

Natasha: For a lot of us who do spend a lot of time in bed or have had to spend a lot of time in bed, and so many of us with EDS have comorbidities that as you said, can be extremely disabling. One of the things that I’ve been thinking about a lot, and you mentioned it earlier, is this kind of boom or busting where we kind of try and get everything done when we feel okay, and then we can crash out for months and months on end and you almost feel like you’re going backwards.
Why is kind of consistency important? And how can people be consistent with having a movement practice, whatever that looks like for them, when they are feeling particularly unwell? What does that kind of look like? Even if we do get boom or bust under control, there’s still an element of that kind of fluctuation that can just happen. A lot of people completely knocked out by the heat wave.
I definitely noticed, especially the first heat wave. I had a ceiling fan in my room. I was completely knocked out under my fan in my bed that entire time and I had a really bad mattress then. So I noticed my pelvis had completely twisted inwards, and I was in so much pain and I still couldn’t move, but that just week or two, whatever it was of not moving, I felt much worse physically for it because of the heat wave.
So how can we start thinking about these fluctuations that are really natural with these conditions, while keeping some form of movement, whatever that looks like?

Jeannie: Yeah. That’s a really good point. Things are going to happen. We can’t control the heat wave. We can’t control whatever reactions we might be having to MCAS and things are going to flare up. Yeah, it’s really difficult. And I know how hard it is because when I have a chronic fatigue flare and the heat, I hate the heat. I certainly wasn’t jumping around my studio during those days either, but even if we’re in bed, are there very little things we can be doing? Even things like the calf pumps, the ankle circles, the leg slides, can I do some wrist circles? Can I gently lift my arm up and down?
Nothing that’s going to… Even as I said earlier, even if that’s one or two repetitions, is there something we can do?
You said, “Why is consistency important?” It’s important because the boom and the busting isn’t healthy. Every time we drop into that boom or bust, I think it gets a little bit harder as well. So even if it means, because there’s the heatwave and I’m not going to be doing my usual exercise routine, can I do some breath work? Can I do some very gentle moves? Can I do some pelvic tilts? What can I do to just keep my hand in a little bit while this thing, whatever it is, is going on? Because the consistency is key, little and often.
That’s what I always say to people. It’s better that you do one repetition for two weeks while there’s a heat wave, than try and do a two hour… Say someone goes to the gym for two hours and says, “Right. I haven’t done anything for a month, so I’m going to go to the gym and I’m going to just get it all done.” That’s not a healthy approach because doing two hours and then not doing anything for six weeks or whatever because you’ve crashed is going to not help the deconditioning.
Consistent, little and often. People always say, “I’d rather be the tortoise than the hare,” and that’s what we are. We are the tortoise and we are consistent. We might take longer than other people, but we get there in the end. Whereas the hare speeds ahead, gets exhausted, passes out. He doesn’t finish the race. Whereas we are the tortoise, we are getting there. It might just look different than it looks to other people and that’s fine.

Natasha: One of the ways I like to conceptualise this is with the no zero day, which I was taught by Claire Campbell, who is a physio that I did a series with on my podcast. And the idea is that because we have fluctuating conditions, what we can do on any given day is going to fluctuate so much that the idea is just to do something that is safe within what you can do without pushing yourself. And I think for me, just figuring out what that tiny thing is, and I try and think of different percentages of all the things that I know that I can do when I’m doing pretty well. And then what is my 1%, 5%, 10%, 20% of that type of movement or task, or whatever? And how can I start paring back or ramping up of a certain thing? And I think by having variations on things that I know are consistent for me, that has been really helpful.
So for me, on my worst days, it literally is sitting up in bed, getting out of bed for a minute because I definitely know with my pain that lying in bed all day makes me feel so much worse. And it’s such a double-edged sword and it takes me onto another topic that I wanted to talk to you about, which is fatigue.
For a lot of people with EDS, fatigue is still a really big issue. When you are fatigued, when you don’t feel like you can move, when you’re trying to think about all of these things, what do we do with fatigue?

Jeannie: Gosh. It’s really interesting because you probably know, my course, Strengthen Your Hypermobile Core was part of a research study with UCL in London and Clarkson University in the States. And this was back in 2018 and still we had so many… We had 700 people take part in this research study and they had to do my online program, if they could, three times a week and we obviously monitored them, et cetera, et cetera. And we’ve got all this data that we’re still trying to go through, but we will go through and there will be a research paper coming out.
The interesting thing was the number one reason why people couldn’t do the online program three times a week or at all was not…we were expecting them to say it was pain. The number one reason they couldn’t do the exercise program was fatigue, which was huge. It really told us a lot about our community. They were all people with EDS or HSD and the number one reason was the fatigue.
So I really think I don’t have all the answers, but I do think this is something we need to really look into. And maybe there needs to be more research around because clearly, fatigue is more debilitating for our community than maybe than we thought. We were shocked by that. Honestly, we thought it was going to be chronic pain. So what do people do? I wish I knew all the answers.
For myself, I have chronic fatigue. Every day I have to build in time for rest. So obviously I work with clients. When I finish work, I will need to go and lie down for an hour. Whether I have a little power nap or I’m just resting, I have to do that every day. And I felt guilty about doing that because I thought, “Oh, I should be… I’ve got washing to do. I’ve got things to do, cooking, blah, blah.” If I don’t take time out for myself, whatever it is I want to do, then I suffer.
And so I don’t think there’s any shame in taking time out to just rest and I think that’s really important for us because we often feel guilty about not doing stuff, but resting is crucial for us, I think if you’re someone who suffers from chronic fatigue and sometimes like you say, sometimes we do just have to rest. And if you are having a really bad chronic fatigue flare and it means that you didn’t do anything for a week, please don’t beat yourself up about it. Start low and slow and we move again. This will pass, it will pass.
There are things. I’ve got that course on my website, which is about managing fatigue. So it’s very gentle, floor based work or stuff you can do in bed. Like we were saying earlier, can I still do pelvic tilts? Could I do a couple of ankle circles? Whatever, there are things we could still do even if we are feeling we are not going to go to the gym or we’re not going to go to our yoga or Pilates class or whatever it is we do.
But yeah, it’s a million dollar question and I wish I could say, you need to do this and everything would be great. I’m still figuring it out and I think as a community, we are still figuring that out.
Joe Southall, who I know you know, she’s amazing. And we had her come and talk to our Zebra Club members recently and she’s full of amazing tips on how to manage fatigue as you know, and her website is full of amazing information, but yeah, she talks about taking micro breaks, taking time out, doing something different.
Like you say, go and sit at a window and look outside and just change scenery, change your thought process. For me, it’s not so much physical fatigue that gets me. It’s mental fatigue. So that will wipe me out. So obviously my work, I’m talking to people most of the day, very intensive, one-on-one. So it’s mentally quite tiring. So that’s why when I finish work, I go and just close my eyes and I change totally scenery or I’ll take my dog for a walk. I need to change and that’s really, really helped.
So little things like that can really, really help. But yeah, unfortunately it’s a huge topic.

Natasha: I could keep talking to you for a very long time, but I’m very aware that we’ve been talking for 50 minutes. So I’m going to respect energy levels. I’d like to kind of wind this up by bringing us back to where we started, which is hope. I’d love for you to just share your perspective on hope for improvement, of not feeling like a diagnosis is the end of your life. Because for so many people, myself included, I was very pleased to have my diagnosis, but then I got very scared when I saw what other people were saying about it. And then when I got worse and worse and worse, I didn’t believe that I could get better.
And even though I’m not back to where I was many years ago, my quality of life has improved dramatically. And I think there is a really vital need to understand how we can get the care and support that we need. And I’d love for you to be able to speak about that.

Jeannie: Yeah. Well, it’s a lovely way to finish and a positive. And like you say, people get their diagnosis and because we don’t have that, unfortunately, oftentimes people don’t have that support. Like I said, the lady I saw today, “You’ve got EDS. Basically, good luck, find your own way.” And that’s something we need to change. We need more support for our community. That’s why I do what I do. Trying to put out as much information as possible on YouTube, et cetera, on my blogs, et cetera. And like you do as well, trying to get information out there.
Like you say, having a diagnosis is good in many ways because it can take away the fear. For me, for the first 48 years of my life, I had all these symptoms, lungs, heart, muscles, digestion. I honestly started to think, “My goodness, what’s wrong with me? Every week, there’s like a new symptom, what’s going on?” Getting the diagnosis actually took away a lot of that fear and anxiety. So I could actually sit down and go… Well, actually, I was relieved because I was like, “Oh, okay.”
And then I could start to get the help and the support. I knew what sort of doctors I needed to see. I could start to get the help that I needed. So a diagnosis definitely doesn’t have to be the worst thing ever. It can actually be the start of actually getting to know your body, getting to know what support you need, building your team of who you want, whether it’s PT, nutrition and finding people who are specialists in this area. Because there are specialists, specialist movement people, dieticians, nutritionists, whatever we need.
Admittedly, it’s hard to find them sometimes. I’m not saying it’s easy, but there are people out there who get this. There are support groups out there. There are positive support groups out there. So there is hope and I always say, as we talked about this earlier, doesn’t matter where you are today. Whatever your starting point is today, there’s always something we can do. And every small step you take, whether it’s one repetition or this or that, it’s a huge emotional step to feeling safe and feeling more in control of yourself, your body, more in control of who you are, instead of feeling like your body’s doing all these crazy things to you and you don’t know why.
And I think that’s the scary bit. It’s like, “Why are all these things happening to me? I don’t know what’s wrong with me,” but actually, we do know, and we can then start to work on that. So please don’t give up hope. That’s my message. For most of us, it’s been a bumpy ride, a difficult journey maybe to get your diagnosis. I know that, but please don’t give up hope because there are people out there who can help and can offer you support.

Natasha:

A huge thank you to Jeannie for joining me for this special episode dedicated to movement. I’ll link Jeannie’s website and information about The Zebra Club in the episode show notes if you want to check her out. She’s got tons of super helpful videos on YouTube too including hypermobility travel exercises, gentle chair exercises and much, much more – just search Jeannie Di Bon.

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Aaand that’s all from me. Thanks so much for joining me in The Rest Room. Ta ta for now!

Fear, Pain & Hope: Movement with Hypermobility

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