Story Time

My Leg Won’t Stop Shaking (Reflex Sympathetic Dystrophy)

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 normal pain messages are sent to the brain.

Well, I have RSD in my leg and it’s atypical, so it constantly sorts of spasming and shaking.

Jessica’s symptoms are completely different from the usual ones. She’s being treated by specialist physiotherapist Sue Mellard.

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 the opposite. It’s causing her legs 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, clothes can irritate it, movement can irritate it.

Okay, no, don’t think about it.

There’s no obvious physical cause for the pain. And when Jessica is asleep, the shaking stops. Treatment for regular RSD involves reeducating 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.

If I give you the ends.

Since she arrived at Great Ormond Street two weeks ago, they’ve been trying to get Jessica used to wear a sock and a Toby grip to teach her brain to fight through the pain. Even such light contact causes it’s been difficult for Jessica’s mum to sue, without exaggeration.

It was like wrestling with the crocodile because of the pain sensation. We had to hold her leg down, her foot down, and then she had to just bear that paint.

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 TV 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 immobilized 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 just seems to have a life of its own.

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Sue Meylard is 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. Jessica is being given a general anesthetic, 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 nonshaking that she’s got now because this case is so unusual no one knows whether the plan will work. There are 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 would 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 legs shaking then we want to be able to take it off quite quickly whereas if we’ve got to do all this Palava while she’s awakened 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 is an experiment. Now everyone is waiting to see what will happen when Jessica wakes up. Jessica 3 hours ago at Great Ormond Street Jessica Grace had a cast put on a leg under a general anesthetic her physiotherapist Sue Mellard hoped the.

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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 legs still shake, King, and she’s in agony, which fit soon knows the pain Jessica is in, but she won’t let her give in to it.

I know it’s so painful because your legs in the position are not being well, we don’t know what’s going to happen when it comes off, okay? If we keep thinking negatively about the worst things, then they’re more likely to happen. Okay? Because what’s happening in your subconscious that’s making your leg do that.

Okay?

We know that now because, in theater, your leg didn’t shake. Okay? 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 is 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 this shaking. She’s quite tearful, and she’s asking to have it removed because the pain is 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 just to leave it a bit longer, okay? Because if we take it off straight away, it will make the whole of what we’ve done not so effective. 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 an absolute clear light at the end of the tunnel.

Jessica’s mum, sue, has to cling to that hope.

It’s 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.

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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.

Okay.

Jessica’s been confined to her bed for over two weeks, so she desperately needs to exercise both legs with control.

Okay. You keep this left leg straight. I’m going to help you with this right leg, okay? And I want you just to do as much as you can, okay? Hold this behind the knee. Okay, let’s lift up.

Already. She’s coping much better when her legs are touched.

Up. Four more. Okay? Really trying to work that hip just trying to get the leg in a straight line because the hip tends to rotate either way and it’s harder for us to relax in that position 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 that because it’s hard to get close when it’s.

Jessica’s feeling much more positive than she was last week.

It’s going well yeah, I’ve done all the exposure to my left leg which is good to get the strengths up as well.

Okay. Are you ready?

I’m 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 then we don’t know if we do it 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 16 days since 14-year-old Jessica had a cast put on a leg to try to stop its constant movement. Thanks for reading.

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