My Leg Won't Stop Shaking (Reflex Sympathetic Dystrophy) | Our Life

Jessica Grace is 14, and her problem is a puzzle. No one at Great Ormond Street has seen anything quite like this before. It's been diagnosed as a form of Reflex Sympathetic Dystrophy, or RSD, a disorder in which abnormal pain messages are sent to the brain. Well, I have RSD in my leg, and it's atypical, so it's constantly sort of spasming and shaking. Jessica's symptoms are completely different from the usual ones. She's being treated by specialist physiotherapist Sue Maillard. What normally happens in RSD is the body, because it hurts, keeps everything really still, and that's a body's normal response to pain. What's happening in Jessica's case is that the opposite, it's causing her leg to shake enormously. The causes of the condition are not fully understood, but the effect is that sufferers experience extreme pain in one of their limbs. Gentle touch can irritate it, you know, clothes can irritate it, movement can irritate it. There's no obvious physical cause for the pain, and when Jessica is asleep the shaking stops. Treatment for regular RSD involves re-educating the brain to ignore the pain, combined with physiotherapy to get limbs moving again. Jessica needs to fight the pain messages and learn to control the movement in her leg. Since she arrived at Great Ormond Street two weeks ago, they've been trying to get Jessica used to wearing a sock and a tubey grip to teach her brain to fight through the pain even such light contact causes. It's been difficult for Jessica's mum, Sue. Without exaggeration it was like wrestling with a crocodile, because of the pain sensation we had to hold her leg down, her foot down, and then she had to just bear that pain. It's sort of all your senses turned up to the very extreme, so it feels like it's burning and tingling and you get pins and needles. So when I first had the tubey thing on, it just felt like my leg was stuck in a fire. The pain is there all the time. The RSD has completely changed Jessica's life. She's gone from being a very independent young lady to being immobilised in bed needing to be cared for completely by her mother. That must be enormously difficult to contend with, as well as having the most painful condition that there is and this leg that just seems to have a life of its own. Sue Maillard's a leading research physiotherapist and has attended many international conferences, but even she has never come across these symptoms before. She's decided to try out something new. You can give her a kiss now. Jessica's being given a general anaesthetic, and while she's sedated her leg is still. Now they'll put a plaster cast on it to see if that will control the movement. What we want to do is make a splint that's going to hold her foot into this position so that when she does stand up her heel and her toes will both touch the floor and her knee will remain straight. And then what we want to do is keep her foot in this position when she wakes up and her knee in this position so that hopefully we can maintain the non-shaking that she's got now. Because this case is so unusual, no-one knows whether the plan will work. There's two scenarios that are going to happen when she wakes up. One will be that this is successful in stopping the shaking of her leg, in which case that will be absolutely fantastic. The other scenario is that it won't stop the shaking of her leg at all, but what it will do in either case is keep her foot and her knee in the correct position that we're going to need it in for weight-bearing again when we start that activity. The cast will be split and held together with bandages. We've split it again so that if she wakes up and she's in absolute agony and her leg's shaking, then we want to be able to take it off quite quickly. Whereas if we've got to do all this palaver while she's awake and screaming in pain, then that's going to be worse for her. But we don't want to take it off completely in case she does wake up and everything's absolutely fine. The symptoms are exceptional and this treatment's an experiment. Now everyone is waiting to see what will happen when Jessica wakes up. Three hours ago at Great Ormond Street, Jessica Grace had a cast put on her leg under general anaesthetic. Her physiotherapist Sue Maylard hoped the cast would control the wild movements being caused by Jessica's reflex sympathetic dystrophy, or RSD, a condition in which abnormal pain messages are being sent to the brain. But Jessica's woken up, her leg's still shaking and she's in agony. Sue knows the pain Jessica's in but she won't let her give in to it. But it's so painful. I know it's so painful because your leg's in a position it's not been. Well, we don't know what's going to happen when it comes off, OK? If we keep thinking negative, the worst things, then they're more likely to happen, OK? Because what's happening is your subconscious that's making your leg do that, OK? We know that now because in theatre your leg didn't shake, OK? So what you're going to have to do is use your conscious, constantly telling your subconscious that the positive things are going to happen. Because the leg didn't shake when Jessica was unconscious, Sue's convinced that if Jessica can fight through the pain, it will begin to lessen. It's all about regaining control of the leg. There's no pathology causing the shaking of the leg and in fact it's a sort of misfunctioning of her brain that's causing the shaking. She's quite tearful and she's asking to have it removed because the pain's worse. But actually she was able to talk and was coping with her pain much, much better than she would have been doing it two weeks ago. I know it's tough, all right? But you're doing fantastically. You really are doing absolutely superbly. What I'd like to do is to leave it a bit longer, OK? Because if we take it off straight away, it will make the whole of what we've done, you know, not so effective, OK? But I'm going to keep coming back and checking on you this evening and we'll make those decisions hour by hour. I know we were all hoping for it to be completely still, but that didn't quite happen. But what it isn't doing is throwing it all over the place. That does mean there's absolute clear light at the end of the tunnel. Jessica's mum Sue has to cling to that hope. It's very, very difficult to watch somebody in pain and the only way to go forward is to inflict more pain because that is the way you've got to recover. So, yeah, it is very hard. 14-year-old Jessica's had a few days to get used to the cast that was put on her leg and now she's ready to begin some physiotherapy under the supervision of Jesse Cope. OK, do you want to come forward? Jessica's been confined to her bed for over two weeks so she desperately needs to exercise both legs with control. OK, you keep this left leg straight. OK, I'm going to help you with this right leg, OK? And I want you just to do as much as you can, OK? We'll hold just behind the knee. OK, so let's lift up. Already she's coping much better when her leg's touched. OK. And up. Four more, OK? Really try and work that hip. Just trying to keep the leg in a straight line because the hip tends to rotate either way and it's harder for it to relax in that position. Just so we can try and do some of the exercises in the most normal way, trying to promote normal movement. But I'm just going to give her a little chance to relax down now because it's hard to do the exercise when it's shaking a lot. Jessica's feeling much more positive than she was last week. It's going well, yeah. I've done all the exercises for my left leg, which is good to get the strength up. And I'm trying to do them with my right leg as well. OK. Are we ready? Wearing the cast still takes an effort. It's got easier, yeah, because when I first put it on it was a lot harder to sort of cope with the pain of my knee being straight and my ankle being up. But it's still very painful. The leg settles down quite a lot when it's in the splint and we've done quite a lot today and we don't want to overdo it. So we're going to do another session this afternoon. So it's better to do a little bit and often rather than just do a big session. Jessica will have physiotherapy sessions like this twice a day. It's going to take a lot of effort to regain control of that leg. It's been six days since 14-year-old Jessica had a cast put on her leg to try to stop its constant movement. Think sweet thoughts. The leg's still moving, but Jessica's coping well with the pain. Specialist physiotherapist Sue Maylards decided to try something different. A tilt table to help Jessica stand upright for the first time in weeks. So this is actually doing some of the work so Jessica doesn't have to do it, so at least we can get some weight-bearing. And the idea is that by getting your foot in the right place, the same as with the splint, that we can actually stop the shaking. Because obviously if you're standing on it, the shaking can't come from down below and it's much harder to do. Let's get your leg in the right place before we stand up, this right one. So I want your heel down on here. Remember, it's just like your splint, OK? My knee doesn't like being straight, so everything really, really hurts. But it's just a question of doing it, really, because otherwise where am I? Trying not to scream and just sort of getting on with it and knowing that that's going to help in the long run, really. You're going to have to put that heel down, OK? So right down, come on, get that heel. Sue has to be tough on Jessica if she's to make any progress. But that's going to make the pain worse, and I've done nothing. I haven't done anything down here, OK? Nothing. You're in control, OK? So you have to control your screaming, OK? You let that scream go, all right? I know it might make you feel better, but it really doesn't help managing this pain, OK? With reflex sympathetic dystrophy, the causes of the pain aren't physical, but that doesn't mean the pain's imaginary. OK, bring this foot across. That's it, good. You're doing well, OK? Squeeze my hand, don't scream. Keep going. RSD is probably the most painful condition that there is. So the pain is extremely severe, and that person really is feeling pain. You know, Jessica really does feel pain, and that makes it really difficult because our normal response would be to give painkillers, but painkillers just don't help in this condition. You're doing great. Let this foot just relax a bit so I can move it. Good. OK, now we can start tilting. Who's got the tilty thing? Can you put your head the other side, though, please? OK. OK, you're doing fantastically. Really good, OK? Let's move this leg round. OK. Now, Jess, you need to control your breathing, OK? All right, we're not going anywhere else, but don't move anything. Don't move anything, OK? The muscles that we're trying to exercise are beginning to start to work. It's not a conscious control, but subconsciously they are beginning to work. Now you need to bring your leg down again, OK? What we're also now trying to do is desensitise with the brain. And by verbally keep going, this is the right thing to do, this is OK, keep going, you know, you're working really hard, all of that's great, is we're trying to give her brain the right information that, in fact, touch, movement, those sorts of things are what she's supposed to be feeling, not pain. But still, it's all moving in the right direction, and that's really positive. Might not feel like it all the time, but it is. Cool. Sue's determined to get Jessica walking again, but it's impossible for anyone to say exactly how long that's going to take. A month after she was admitted to Great Ormond Street, 14-year-old Jessica's almost ready to take a big step too. Sue Maylard's convinced she's ready to stand. Don't move anything else. Jessica's legs definitely stopped shaking an enormous amount, and part of that's due to the fact that she's worked so hard on her desensitisation. There's just a very slight twitch left, which does cause the whole leg to still move, but it's just still a very slight twitch, so that's a fantastic improvement. What we're working on now is gaining active control so that the twitch will go away and the whole leg will remain, well, go back into Jessica's full control, which is where we're nearly at now. It's great. It still takes enormous effort to overcome the pain sensations Jessica's brain registers. Let this go down. Stop it instantly. You can do it. That's it. Good. You need to stop crying, though, Jess, because this is going to take quite a bit of emotional energy because we've got to try and get your head to start thinking straight, if that makes any sense. Come on. Well done. Okay, so put your foot down. It doesn't need to do that, though. It doesn't do it with the splint on. Okay, now put your heel down. Good. No, no, no, Jess. Absolutely don't do that, okay, because all that says is your brain is it's okay for this to hurt. Is it okay for it to hurt? Okay, see, it was easy. You've got all your weight through there. On the mat. You have good control over your leg. Keep that control. Go on. No, don't let that shaking happen. Okay, now slowly turn around and sit down. Slowly turn around and sit down. I've done it before I'd even finished a sentence or a grimace at me, one or the other. Right, ready? Oh, my word. I was expecting a yes. Foot on the floor. Don't lean so much over to the left. And slowly turn around and sit down. And sit down and stay sitting. Don't leap out of the way. Put your foot in the right place, though. Perfect. That's really good. Fantastic. Perseverance has paid off for Jessica. It was really a case of pushing forwards on the way to walk as well as pushing forwards on the stamina. So Jessica's really getting some really good control of her muscles now, which she didn't have last week and she does have now. The pain hasn't changed at all, but I've learnt to be relaxed with it and sort of cope with it. But even if it's still there, I'm aware of it, but I can't sort of let it get to me. Better. Again, just try and... smooth. It is incredible, but she's actually, as you know, she's incredibly determined, so obviously that strength suddenly comes. Trust your right foot a bit more. Your foot is strong enough. Yeah, it's amazing. I'm pleased, obviously. Better, much better. Nice and slow. Up tall, head up. Jessica's been at Great Ormond Street for six weeks. Now she may be allowed to go home for a weekend, but first she has to prove to physiotherapist Jesse Cope that she'll be capable of getting around the house. Posture. You've been taught how to walk like a model. We want her to have a bit of normal function when she goes home because she needs to be able to go up and down the stairs for her bedroom and the bathroom. As she goes home long-term, we're going to want her to get back into normality. It's been three months since 14-year-old Jessica Grace was admitted to Great Ormond Street, unable to control the wild movements of her leg and in agonising pain. It's taken all that time and an enormous effort to learn to walk almost normally again. OK, now everyone's going to do up and down, and Jessica and Hannah are counting. Now Jessica's been told she can go home. This is her last physiotherapy session. Jessica has just come on leaps and bounds. She's walking good distances. She's, you know, just made enormous progress. It is quite an amazing feeling watching Jessica walking because, you know, from the very beginning, it was such an extreme reaction. She's done an amazing job, and, you know, without being too boastful, I think we've all done an amazing job. It's been a real rollercoaster of emotions for everybody. So you might miss me a little bit then. Hey! You've done so well, haven't you? Out of all the people that we've had, you know, going through these rehab programmes over the years, I think you've had to work the hardest out of just about everybody. And, you know, there you are. Be back to school in September. It'll all be a distant memory. Even for such an experienced professional as Sue Maylard, it's been an exceptional journey. There is no textbook that you could go and look up what to do about Jessica's leg. There was no answer. There wasn't really anybody who'd seen that type of condition before. So I really, and my team really, had to think about every bit of knowledge that we had and try to see if it was going to be useful and effective for Jessica. So very challenging on all fronts, plus the enormous amount of pain involved. I mean, right at the beginning, getting her on the tilt table and the agony that she was in, I mean, that was very challenging to keep going with that and to keep pushing that forward. Even though in my heart of hearts I knew it was the right thing to do, it's really difficult to do that. Even if it's not your own child, it's really hard to put another child through that. Jessica's condition remains something of a mystery. How and why she came to show such extraordinary symptoms is still unknown. She'll need to stay in touch with Great Ormond Street and she may need further physiotherapy if there's any sign of a relapse. But for now at least, she can return to her life again. I'm really looking forward to getting back to normal and seeing my friends and just getting back to school and everything, yeah. It'd be nice to have a life. No, yeah, it would just be nice to let Jessica to go back to normal and, yeah, pick up where she left off.