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Pain after stroke

14 March 2017

Read the transcript below

Pain is common after stroke. It can start while the body is healing, but it can also stick around long term. When it does, it makes daily life difficult, and can wear you down over time. But even if you can't make your pain go away, it's still possible to do something about it.

In this podcast, we speak to pain experts about reducing pain levels and improving your quality of life. Our guests are:

  • Brendon Haslam, a physiotherapist and researcher on pain after stroke, focusing on neurological causes and treatment of upper limb pain.
  • Emma Gee, a stroke survivor, occupational therapist, inspirational speaker and author of Reinventing Emma.
  • Simone Russell, an occupational therapist from the Stroke Foundation’s StrokeLine.

You can purchase Emma’s book at her website, emma-gee.com (use the code RE2017NSF at checkout to get free shipping within Australia).

To take part in Brendon’s research on upper limb pain, see his Stroke Laterality Study web page.

Online chat
On Wednesday 22 March 2017 we held an online chat with the guests from this podcast about pain after stroke. Download a transcript of the chat.

Podcast transcript

Download the transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: If you're experiencing pain after a stroke, you're not alone. Pain is very common. It can start while the body is healing, but it can also stick around long-term. And when it does, it makes daily life difficult and it can wear you down over time.

But even though it can be hard to get rid of pain, you can still do something about it. In this episode, we're going to talk about ways to reduce your pain levels and improve your quality of life.

We'll be speaking to physiotherapist and researcher Brendon Haslam about the neurological causes of pain and the treatment of upper limb pain, and we'll talk to occupational therapist Simone Russell from StrokeLine.

But first we're lucky to have young stroke survivor and author Emma Gee. Emma is also an occupational therapist, but since her stroke she's become an inspirational speaker who presents on person-centred care and resilience. She's also written a book about her stroke journey, it's called Reinventing Emma. Thank you for joining us.

Emma: Thank you.

Chris: I mentioned that you've written a book all about your experiences, but could you just give us a brief overview of your stroke story?

Emma: I was working full-time as an occupational therapist. When I was 24 I was diagnosed with a malformation in my brain stem and, in removing that, I actually had a stroke, a haemorrhagic stroke, and went into a coma. And so therefore woke up with quite a few deficits including pain, chronic pain, and underwent quite a few years of rehabilitation. That was 11 years ago now.

Chris: Eleven years. That is quite a while. Pain has been a major challenge for you in that time.

Emma: Yeah.

Chris: Has it changed much over the 11 years?

Emma: Definitely, with reflection. It's definitely something that's been very prevalent over a decade now but it is something that, as time has gone by, the experience I've learned, what my body's telling me and what strategies do work for me. It definitely is not just adapting to my new life as a stroke survivor, but also really factoring in more of a holistic approach and being mindful of the emotional impacts that pain does really present you with. Being able to accept where I was at and what I could do about that.

Chris: What sort of pain have you had and what does it feel like?

Emma: When I woke from my coma, it was just a really burning hot ... like skidding on hot concrete. So intense I didn't want to move my body and I found it really difficult, having worked in pain management as an occupational therapist thinking I knew what to do. I didn't understand fully why a lot of my own patients would not use limbs and would cradle their limbs and avoid doing activities. Suddenly when I was experiencing that pain, I realised how debilitating it was and that I had to try and move beyond that. A really difficult thing.

Yeah, so it went from that high level of pain which really clouded everything I did and really impacted how I went about activities. Gradually, over the years, learning that it was not going away and I was going to be ridding it. I came to a more, I guess, way of doing activities that helped me manage my pain a lot better and working out that in my circumstance, medication wouldn't help. But all that was trial and error, and also educating those around me about how they could help me. So yeah, many different strategies I’ve used and it took me a while to work out what helped and what didn't.

Chris: Right. You mentioned that you got activities that help you. What kind of things do you do that you find help?

Emma: Because my balance was really affected from my stroke, I couldn't tolerate a lot of the medications as I would sort of domino my balance. Because I, following my case, didn't touch my pain, I commenced doing swimming and doing yoga, which I do now. Most days I would do yoga or swimming or, if I'm travelling or I can't get out for some reason, I just do meditation. So mindfulness and really doing everything I can to ensure that I can do all I can do to manage it.

Chris: I guess as well as these things that you do that help improve the pain, you said that there are some things you find that bring it on or make it worse.

Emma: Yes.

Chris: What kind of things do you think triggers it?

Emma: It took me years to work out but I now definitely know that if I have a huge drop in temperature, it really throws me. My body interprets every sensation, I think, as pain. So if it's a hot rail, I can't feel temperature so if I'm touching it and I get a pain response. It's like an electric shock up one arm. Which is probably a good thing, in a way.

If I'm too tired, if I'm stressed, if I'm ... Basically, if I don’t have balance in my life, everything, my sleep goes, my pain goes up. So definitely, every single aspect of my life is probably a contributor if it's out of balance.

Chris: I guess that comes back to what you were saying before about accepting it and not letting it stop you because, in these circumstances, clearly you have to do something to get back into balance.

Emma: Definitely, and I think I always had the mindset throughout my recovery that I needed to rid my pain before I could get on with life. You know, many people I meet and who have chronic pain do go about their days thinking that they've got to find an answer, they've got to fix it. But I think for me, with time, I learnt that rather than putting all my energy into fixing it, I had to accept that it was there and that I could still function. I just had to acknowledge it and travel with it, rather than let it sort of dictate where I went in life.

Learning ways, and it took me ages to really accept that. It wasn't a sudden realisation. I had to practise it and live that way. But, like everything, with practise it did. I know going for a swim early is hard a lot of the time but I know I'll gain from it. So, yeah.

Chris: Is there any other advice then that, based on this, you would give to other stroke survivors who may be experiencing chronic pain?

Emma: I think there are so many things I could say about it, but I think one of the huge important things is in educating others around you to support you through it. Because I guess invisible deficits like pain, it's really hard for you and others particularly to really understand. I know people in my life around me, my close supports, know that if my pain is not managed properly, everything else goes out. So they know, and I get more irritable, I get more tired, you know? And they know that.

I guess in letting them know and getting their support, so my close family might go, "Okay Emma, go to the pool", or, “Go to yoga.” You know, when I'm in a vulnerable state and my pain is really high, that they can go, "Yep, just do it". And that's helpful for me. So I think a lot of our energy when we're grappling with managing our pain goes towards saying, "I'm feeling awful and my pain is high". Everything is focused on the pain, how awful it is and how no-one understands, and it only isolates us more.

So I think, you know, instead being proactive and going, "Yep, this is how I can control it rather than let it control me".

Chris: Thank you for that. I'll ask you to stick around while we speak to our other guests.

Emma: Thank you.

Chris: But in the meantime, anyone listening out there who wants to find out more about Emma's story, you can purchase her book, called Reinventing Emma, and it can be purchased in paperback and e-book format at her website, which is emma-gee.com. That is emma hyphen gee – G double E I should say is how it's spelt – dot com. The book is $29.99 and if you use the code RE2017NSF at the checkout, you will receive free shipping within Australia. Thanks again, Emma.

Emma: Thank you.

Announcer: Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work.

EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you're progressing and celebrate your successes.

You can also connect with other people who set goals similar to yours. And challenge or inspire each other.

You can even set up a blog to write down how you are feeling and share your own story.

And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke. Visit enableme.org.au.

Chris: Now our next guest is Brendon Haslam. Brendon is a physiotherapist who specialises in pain after stroke. He is a faculty member of the Neuro Orthopaedic Institute and he is currently doing his PhD at the Florey Institute in Melbourne on the neurological causes and possible treatments for upper limb pain. Thank you for joining us, Brendon.

Brendon: Thanks, Chris.

Chris: Now pain after stroke, it does come in different forms. We've heard a bit about Emma's experience, but what are the main types of pain that people might have?

Brendon: The main types of pain, I think, officially we tend to turn them into that sort of coming from the tissue, so it's the normal pain that we associate in response to injury. So where there's tissue damage, the signals ... and this is referred to as nociceptive pain, where they talk about danger in the tissues.

The other, which is a complicating factor with stroke, is more the term neuropathic, where because of damage to the nervous system, the actual processing of the information that is coming in is processed in a slightly different way. So those messages can be interpreted differently and then can, for some people, really prime them to regard it as higher danger signals coming in, and they're more likely to experience pain.

Realistically, with a lot of people sort of ongoing post-stroke, we're really dealing with contributions from both types, both from the tissues and from this altered processing.

Chris: Are there other complications as well? I'm thinking of things like spasticity and subluxations and that sort of stuff where you get that kind of pain from changes in body limbs, or…

Brendon: Yeah, absolutely, and post-stroke we know that for a lot of people their awareness of their body parts and body ownership is affected as well, and that certainly can be a contribution with regards to people going on to develop pain. Spasticity, lots of muscle spasm, can I guess get firing from the tissues a little bit more. It's safe, but the signal is very, very strong.

The interesting thing with subluxations of shoulders, which are obviously quite common post-stroke, all of the thinking originally was that shoulder pain was classically because of this subluxation of shoulders. The link between that isn't actually as strong as what we first thought. There's a lot of people out there with subluxed shoulders who don't experience pain, and a lot of people that experience pain who don't have a subluxation.

So it's not a hard and fast rule. It's really a matter of looking at each person and their individual contributions, and then trying to work out what are the things that are contributing to that person responding in the way where they're experiencing pain.

Chris: Look, I'll just throw in a quick plug there for our own podcast. We did a podcast a few months ago on spasticity, so people can go to our website at enableme.org.au and track down that one if you want to find out more about spasticity in particular. But I guess I want to ask you more, Brendon, about this neuropathic pain, which is caused by the stroke itself and its effects on the nerves and the brain. Is there a particular part of the brain, a particular type of damage, that is involved?

Brendon: Look, it would be great if we could put it down as something as straightforward as that. Classically, the thinking of the thalamus, which is a bit of a gateway of processing the sensory information coming from the body to the brain, was considered to be the real cause of this neuropathic pain or this central pain post-stroke.

Again, the thinking has now needed to shift a little bit and while having damage to the thalamus or a lesion to the thalamus certainly increases the chance of someone experiencing this ongoing pain, again there are plenty of people out there with thalamic lesions who don't experience pain. And not everyone whose lesion is outside of the thalamus necessarily experiences pain or not.

So having the thalamus involved and the pathways that go through there certainly is a factor that makes someone more likely. But it's not a hard and fast rule.

Chris: We did put a call out to our listeners for questions for this podcast and we had quite a few responses from people saying they had leg pain. I know though that you specialise in arms and shoulders and that sort of thing more. Are there particular parts of the body that are more affected than others, do you think?

Brendon: Actually, this is something that is pretty well researched. There's lots of research out there saying how much of a problem pain is post-stroke. There's lots of these incidence studies and, overwhelmingly, the most common pain symptom post-stroke is with shoulder and upper limb pain in general. But really, any of us can experience pain in any part so it really depends on things. I know through EnableMe there's been lots of leg discussions, and that's a very significant part, but the upper limb is actually much more common with regards to that.

But also, people can experience multiple areas with pain so, yeah, as a general rule the shoulder is the classic first one but the incidence of other areas is very common and we just take each one on its merit.

Chris: We're talking about pain that can be caused by something that's happening in the brain itself. It doesn't really follow from that that it's all in your head. However, it does seem like there is this relationship between pain and people's mood. And we've heard from Emma that when her life is out of balance, when something is not right with stress or something like that, then that could cause pain as well. Is there a cause and effect relationship, do you think, between these things?

Brendon: There's definitely a relationship there. I guess just to jump on this idea of "it's all in your head", I think is a really dangerous sort of thing to say, I think. Certainly, the experience of pain is created by the brain based on the information that is coming into it. So if the information is coming in and is processed in a way where there is an idea of danger to those various body parts, then it's a logical conclusion for someone to experience pain.

When we start to go into things like mood, it's really well detailed actually that people with low mood, in chronic pain generally outside of the stroke population, there's a strong association with low mood and ongoing chronic pain. If one causes the other, it can work both ways. What we do know is that having chronic pain is not good. It's not fun and therefore it's quite reasonable that people would go on to, for some cases, experience depression. Also, we know that those with depression have a higher likelihood of developing ongoing pain.

I think one of the big things to understand with regards to low mood is that the chemical balance in the brain starts to change from a release of endorphins or 'happy hormones', or things like that. Lots of different sorts of chemicals. They are produced when people are actively engaged in meaningful activities and particularly in enjoyable activities. If that is reduced, then that chemical balance starts to change. But also, that chemical balance is really important as a way of quietening down some of the information that's coming in from the body.

So in low mood states, we tend to lose that ability to quieten down some of the information. So that information coming in from the body is perceived in that louder state and more threatening. So we really need to engage in these meaningful activities, as Emma was saying.

Chris: With these types of pain, what sort of things can people do about it?

Brendon: In looking at what to do with regards to pain, Emma really hit it on the head. It needs to be holistic. We can't just take a single approach, we need to look at things across the board. First of all, we need to assess to make sure that there hasn't actually been tissue damage, okay? Stroke survivors, like any of us, can suffer injuries and sprained ankles and various things, so we still need to look at that to exclude that that hasn't happened.

Then it is about assessing what's going on and what are the different contributions that are going on. But from a treatment perspective, looking to educate someone, trying to develop an understanding of what triggers it, what is more comfortable, looking at a psychological component. So getting people engaged in tasks like meditation, mindfulness, yoga, combining the physical sort of things as well, and engaging in meaningful physical activities. so that we get the system primed to be able to take on more. Okay? Help with mood. Help with some of this production of other hormones.

But then there are some specific physical strategies that we can also look at now, and some of this idea of the sensory information being processed slightly differently. What we're seeing is that in situations there's some medication studies that are going on in Europe, where the sensory system has been showing that the better the sensory system is, the more effective some of the medications are.

So we can start to tailor things and we need to look at addressing the sensory system to try and get everything going as well as it can, so it can tell the difference between hot and cold and it's not so threatened by some of these other things which, if it doesn't understand, it has a much higher threat value.

Chris: Look, I'm going to ask you about some of the techniques that you've used in your own practice. But just some of the things that we might turn to initially, we're looking at medications and those sort of things. Generally, are there painkillers and things that can work, or is it not the path to go down for this kind of pain?

Brendon: Most of the research that is out there is looking at medication studies, and certainly in chronic pain in general, there's a shift in medications to go away from those classical opioids and things like that to look at more medications that look to quieten down the nervous system. And that's the same with regards to pain post-stroke. There are medications out there that unfortunately have been named by their first use, so anticonvulsants and antidepressants, that seem like they're addressing something else but that have been shown to have effect with regards to pain.

Unfortunately, many people post-stroke, just like Emma's saying, have difficulty tolerating those medications because they tend to quieten down the whole system and can leave people quite fatigued, and different things like that. For some people these medications can be really effective at quietening down the system, helping with the processing of that information. But we need to be mindful of the side-effects for some of those people as well.

Chris: How about other things people might ... I suppose if they've got a pain in their leg, for instance, or in their arm, they might think about having a massage of those muscles. Is that any use to them?

Brendon: In ongoing pain states, so in chronic pain, we know that massage, things like that that can quieten down the tissues, and use of heat can be really helpful in providing short-term relief. For that longer-term effect, we need to actually make sure that we engage the person and that we get the brain and their nervous system to not only hear information coming in, but to do something with it. Whereas massage or use of heat is a passive thing, people lie there, what we'd be looking at is that maybe use of massage or heat can produce a really nice short-term effect. But we'd then want people to engage in starting to do some of those other activities as well to start to try and change the system and activate that active system that we need to be able to self-regulate and quieten down the information.

Chris: Emma, I believe you have something that you wanted to ask.

Emma: I just wanted to ask Brendon, there was in my experience with my pain, you were speaking before about the prevalence of upper limb pain more than lower limb pain in stroke studies. I myself have more, it's all left-sided pain, but I found that over the decade or so I've dealt with my pain that it has actually shifted. So whereas it was once worse in my lower limbs, it's now a lot worse in my left hip. Is it fair to say that that happens?

Brendon: Absolutely. It's actually quite common that people's symptoms change with regards to things, as they're doing things, because also their activity has changed. They engage in different things and they utilise different body parts in different ways, particularly when people aren't walking as much. To start with, they're not getting as much information coming in and using that information in that output of different movements.

We know that as people's activities change and what they engage in, that it is actually really common for their symptoms—just like their movement performance to change and improve—we know that their symptoms can change in one way or another. This is actually really common in chronic pain for non-stroke populations as well, is that we start to get more of a spread of pain to include other surrounding areas and other sides even, sometimes.

And depending on the activities, the danger system and that experience of pain will shift, based on what's being engaged in.

Emma: I think, as Chris said before, is there something that you would recommend to other listeners? I think for me, as a stroke survivor, hearing, knowing that things were going to change, that I would adjust. Because it's really important in my recovery if I'd have known that when, two years into my recovery, I was laying on the ground and couldn't even lift a pillow because my pain was so high, and went to look into so many other treatments like deep brain stimulation to help manage that. Which I didn't go ahead with. If I'd have known that it would settle and that I could do my activity and it would change, that would have been really helpful at the time.

Brendon: I think this is a crucial sort of thing. When we're looking at being effective therapists and health professionals engaging in the area of pain, the most important thing that we can do to start with is educate...

Emma: Yes.

Brendon: ...about what is going on. The more that it is a mystery, the more scary it is and the more unknown and that we lack control, we lack the potential to have control. So the fundamental thing that is coming through in lots of different groups with chronic pain is the most effective thing is education first. Even just with providing education, what we see is then some of those other therapies, like physical therapies and psychological strategies and medications, then start to become more effective.

Emma: Yes.

Brendon: Because people understand what they're trying to do and that we're looking for that change over time. So the key thing is this understanding and that's what we really need to be getting the message out. Which is why I'm so excited about today.

Chris: Well, I suppose this is a good time to talk about some of your own research, Brendon, because this is helping to expand our understanding and our knowledge for survivors as well as their health professionals. What kind of things are you working on at the moment?

Brendon: There's two main studies that I'm certainly involved with. One is actually a sensory training study that we're running here in Melbourne at the Florey Institute with people with sensory deficits, particularly in their upper limb, and looking at the influence of training that sensation to be better for people to be able to pick out better differences and things like that. And see how that affects their sensory functions but also with regards to their pain. The exciting thing with that is that we're able to provide a treatment intervention for it, and the effect is measured at periods over time. Which also includes the use of functional MRIs so we can actually see the changes in brain activity as they're performing different things and see how good they are at using those particular bits. But also at their ability to maybe quieten down some of the other areas, because we know that in pain it's a bit like a fireworks sometimes with the whole area sort of lighting up.

That's a really exciting study that we're doing here. Another study that we're leading is an online study really looking at, as Emma was saying, a lot of the treatments were based on trial and error. Let's try this to see if it works, let's try this to see if it works, and find some things like that. What this study is, and it's an online study so I urge anyone with stroke pain or without pain to participate, is trying to identify the different contributions that are going on and start to develop profiles of psychological contributions, sensory contributions, but also the ability of body ownership and being able to recognise different areas of their body, and start to own that, so that we can ultimately—sorry, as well as with their medication use—so that we can ultimately start to identify which potential treatments might be more appropriate for a particular person, based on their symptoms.

There's been some really nice research just published about a month ago looking at the use of imagery techniques. So mental imagery, this motor imagery and use of things like mirror box and stuff like that. That's giving us another avenue that we've been using for a while, but we still need to be able to identify who is going to respond best to what, so that it's not just all trial and error. This is really replicating similar stuff that's been done in medication studies where they're looking to develop these profiles. So that's a really exciting thing, but to get effective of that we need some pretty big numbers to be able to make those comparisons and really develop this effective targeted strategies that we're after.

Chris: It's interesting that it is so individual and so targeted. I'm obviously not saying that anything we talk about here is a good treatment... everyone is different and will need a different approach. But can you explain a bit more about some of this imagery techniques and the mirror box? What does that mean and how does that help with pain?

Brendon: I guess the mirror box is the classic example that gets a lot of media attention, and it's been used in TV series and in various sorts of things. It was initially utilised for people with phantom limb pain who had a missing limb but continued to experience pain in that part. The use of the mirror is actually giving visual information where the person sees that that limb is still intact. They see the reflection of the other side and, actually, we know that that activates the area of the brain associated with the missing part.

In essence, we're really trying to train the brain, get into that area in ways that would otherwise be quite difficult, and try and improve the ownership and the organisation of that so that it's able to process again this information and more towards a normalised sort of situation. So there's some really logical references with regards to stroke in this thing. In this sort of situation, not many people can go straight into mirror box therapy. A lot of people find that quite challenging and it can be a bit overwhelming.

There are a number of stages of imagery that we can do along the way so that they potentially can get a better effect from the mirror box treatment as well. So we're trying to really marry the imagery techniques, as I've just discussed, along with the sensory techniques to try and improve people's sensory abilities to pick the information out. All of it is about creating better body ownership of the affected area in order to be able to understand it, utilise the information better. And better responses, better experiences.

Chris: Recognising that parts, that is part of your study, that you're looking for people to take part in the survey?

Brendon: Absolutely, so very much designed to complement some of the other studies that are going on, really to be able to target, okay, who's going to going to respond best to what?

Chris: We will put more information on how to take part in that project on our website. You can find it on, I believe it's on the Neuro Orthopaedic Institute website at research.noigroup.com. Is that correct?

Brendon: That's right, that'll take you. There's a link there that will go to the stroke laterality study which is the one that we're doing. Yeah, thank you for putting it on the website. That'll be a really nice thing.

Announcer: When you or someone you love has a stroke, you are instantly bombarded with a whole lot of medical terms. And it's pretty hard to take them all in. It's like learning a whole new language.

To help you, we've created Strokasaurus, a glossary of stroke terms. It's an A to Z guide of the language used around stroke. From atrial fibrillation to webster pack, it explains key terms in simple language. You can access it on your computer, smartphone or tablet, at enableme.org.au

Chris: Finally today, we have Simone Russell, an occupational therapist and one of the voices that you can hear on the Stroke Foundation's StrokeLine. Thank you for joining us once again, Simone.

Simone: Thanks, Chris.

Chris: We've heard from Brendon as a physiotherapist, but you are an occupational therapist. What can OTs like yourself, what role do you have in helping people manage pain?

Simone: We like to work, obviously, as a team anyway, but as an occupational therapist in particular we will look at the whole person. So, as both Brendon and Emma have touched on, a really holistic approach. Looking at, really, I guess how the pain is impacting on their day-to-day activities and their quality of life. Also their mood, that's been touched on already. And looking at some of the things that have been mentioned. You know, the location of the pain, is it an acute pain issue or is it something that is going to be a longer term neuropathic pain?

You know, what are the triggers? Is it change in temperature, as Emma has experienced? Is it fatigue? Stress? All sorts of different factors might come into what might trigger the pain, and really working with the individual to come up with appropriate strategies and also a routine that works for them. I think Emma's really touched on what works for her and given a really good example of how that has helped her to manage her pain, but to also live a better quality of life rather than letting the pain rule her.

We will also implement strategies that Brendon has touched on, so that might be mirror box therapy. It also has a large component of education really, informing the patient about what's happening at a brain level with the pain perception, and also looking at other strategies that might be relevant for that person.

Chris: It sounds like one of the challenges, though, is getting someone to help you with the pain, someone who understands how it works. The question we've had, a lot of people have trouble explaining to their health professionals what they're going through and getting that understanding. How can people find someone to help them with their pain?

Simone: Yes, it is a really common enquiry we get to StrokeLine and also on enableme, and through our Facebook page. I think that there is still a lot more education that's needed around pain, particularly in the area of stroke, and I would say yes, GP is often a good starting place. But if you're not finding that you're getting anywhere, if you are still involved with a rehabilitation team or if you have a rehabilitation physician or doctor that you're seeing, they can be also a really good starting point.

If you're a little bit further down the track after your stroke and pain is continuing to be a concern for you, and you're not getting anywhere with your current doctor, I would look at contacting Pain Australia, who have a great list of pain management clinics. You can get a referral to a pain management clinic. You can also call StrokeLine and we can help brainstorm what might be the best option for you specifically, depending on your location, your state, what services are around you.

Often, even in smaller country areas, there may be someone that's well known for working with people with pain, or at least working with people after stroke that we can at least get them linked into.

Chris: So the people are out there, it's just a matter of finding them?

Simone: Exactly. That's right.

Brendon: Also, this is a real priority for us is educating health professionals. Allied health, medical, nursing, across the board with regards to this about pain in neurological conditions such as stroke. There is now more of an educational push as we start to roll some of that out. So hopefully that will become more and more common.

Chris: It sounds like it's a rapidly developing area and there is a lot of knowledge for people to keep on top of.

Brendon: I think so. Hopefully we're seeing an end to the days of, "You've got pain and you've had a stroke, deal with it." That's no longer a good enough answer now and we need to be better and we need to be able to provide advice and offer strategies, and that is a bit of a cop-out now I think.

Chris: Yeah, well that's a great message that we hope gets across. Simone, what are your top tips that you would want stroke survivors to take away from this podcast today?

Simone: I think that Brendon and Emma have captured a lot of the top tips that I would also cover with stroke survivors that call in to StrokeLine. But the first one I would say is don't go it alone. I think a lot of people out there in the community living with pain feel very isolated. Many feel misunderstood. They don't get the support, perhaps, from the people around them or from their doctors in some cases. They don't really feel that there's, I guess, a positive outcome for them.

So I'd say don't go it alone. Get help, whether that's through experts working in pain and stroke management, whether that's face-to-face peer support through a peer support group and really talking to other survivors who may be experiencing pain themselves. As well as our online support as well. So we've got EnableMe as a great source of support. There's some fantastic conversations on there around pain and what works for different stroke survivors. I know, Brendon, you're also on there as well, so there's a range of supports that I would suggest, but certainly working out whether face-to-face or online support is an option. But getting that support really helps.

The second one would be, which has also been touched on, is really educate yourself. Pain can be complex and if you're new to stroke and you're new to pain, it's something that does require a little bit of education. There's certainly education available out there. Once you get the right access to that education, it really helps you to understand and map out a pathway for you to manage the pain.

That, as I said, can be working out what's the cause of the pain, what's the type of pain I'm experiencing, is medication an option, are my medications working? Is there a study I can participate in that might actually give me some extra benefits and strategies that I can use?

And looking at all of those strategies that we've touched on, in addition to medication but yoga, mindfulness, physical exercise is really important, as we've touched on. And some of the more psychological help, so cognitive behavioural therapy and distraction techniques, as well as the motor imagery and mirror boxes, other options as well. There's so many options and I think having education to work out what might be the best option for you is obviously something that's important.

Third tip is really around knowing what works for you. This is touching on from, I guess, the second tip as well. So finding out, listening to your body, starting to notice what does work for you. And I think Emma has painted the perfect picture of, you know, she knows when things are out of balance that the pain also increases, and that keeping that life balance is so important. Trial and error is sometimes unavoidable for most people in their pain journey, but we're hoping with more evidence and research that that will become a little less of a trial and error or hit and miss in the pain journey. But it could be different from one person to the next, as well, so understanding that each person is individual and really taking that holistic approach. As we've touched on, sleep, even diet and what you eat, stress levels, all of those things come into play at well.

My last tip would really be just to be kind to yourself. You know, it's not easy when you're faced with a stroke, first of all. But then to have pain and potentially chronic pain on top of that, particularly if it's debilitating, it's a big challenge for a lot of stroke survivors in addition to all of the other factors that come into adjusting to life after stroke. So I'd say be kind and compassionate to yourself and make sure you do reach out for support, whether that's through peers or through health professionals and experts in the area.

Chris: Thanks, Simone. That is some excellent advice and does really fit in with the stories that we've heard from Emma and Brendon as well. Now, if anyone wants to ask further questions of Simone and our other health professionals, they can call StrokeLine on 1800 787 653 or 1800 STROKE, or I believe people can ask questions via enableme.org.au as well.

That's all we have time for today. If you like what you've heard, please help us out. You can give us a good rating and a review on iTunes. We'll also be holding an online chat on this topic so that you can ask your own questions. If you register as a member at enableme.org.au you can get an email alert which will tell you when the chat will be held. You can also find transcripts of our previous chats we've had on other topics. They're also available on the website.

Thank you once again to our guests. We've had Emma Gee, Brendon Haslam and Simone Russell. Remember, you can buy Emma's book Reinventing Emma at her website emma-gee.com, and if you use the code RE2017NSF at the checkout you can receive free shipping within Australia. And of course, Brendon's study, looking for as many participants as he can get to help him with his research. That can be found at research.noigroup.com, and we'll put a link to both Brendon's and Emma's website on our podcast page.

Thank you again, Brendon and Simone and Emma.

Simone: Pleasure.

Brendon: Thanks very much.

Simone: Thanks, Chris.

Announcer: That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at our website enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from StrokeLine who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au.

This EnableMe podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.

Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement. But you might also be experiencing tight muscles or stiffness in your arms, fingers or legs. It's called spasticity. 

You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture or unusual limb positions. And it can cause pain. It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback and muscle relaxing medication.

What is important is to start your rehabilitation as soon as possible after a stroke, and to discuss your goals and progress with your rehabilitation team at every stage. Allergan is proud to bring you this EnableMe podcast.

Pain after stroke

14 March 2017

Read the transcript below

Pain is common after stroke. It can start while the body is healing, but it can also stick around long term. When it does, it makes daily life difficult, and can wear you down over time. But even if you can't make your pain go away, it's still possible to do something about it.

In this podcast, we speak to pain experts about reducing pain levels and improving your quality of life. Our guests are:

  • Brendon Haslam, a physiotherapist and researcher on pain after stroke, focusing on neurological causes and treatment of upper limb pain.
  • Emma Gee, a stroke survivor, occupational therapist, inspirational speaker and author of Reinventing Emma.
  • Simone Russell, an occupational therapist from the Stroke Foundation’s StrokeLine.

You can purchase Emma’s book at her website, emma-gee.com (use the code RE2017NSF at checkout to get free shipping within Australia).

To take part in Brendon’s research on upper limb pain, see his Stroke Laterality Study web page.

Online chat
On Wednesday 22 March 2017 we held an online chat with the guests from this podcast about pain after stroke. Download a transcript of the chat.

Podcast transcript

Download the transcript

Announcer: Welcome to the EnableMe podcast series, where we bring together stroke survivors, health professionals and researchers, providing you with practical advice to enable you on your journey to reclaim your life after stroke.

You can join the conversation at enableme.org.au.

This series is presented by Australia's national Stroke Foundation and sponsored by Allergan.

Chris: If you're experiencing pain after a stroke, you're not alone. Pain is very common. It can start while the body is healing, but it can also stick around long-term. And when it does, it makes daily life difficult and it can wear you down over time.

But even though it can be hard to get rid of pain, you can still do something about it. In this episode, we're going to talk about ways to reduce your pain levels and improve your quality of life.

We'll be speaking to physiotherapist and researcher Brendon Haslam about the neurological causes of pain and the treatment of upper limb pain, and we'll talk to occupational therapist Simone Russell from StrokeLine.

But first we're lucky to have young stroke survivor and author Emma Gee. Emma is also an occupational therapist, but since her stroke she's become an inspirational speaker who presents on person-centred care and resilience. She's also written a book about her stroke journey, it's called Reinventing Emma. Thank you for joining us.

Emma: Thank you.

Chris: I mentioned that you've written a book all about your experiences, but could you just give us a brief overview of your stroke story?

Emma: I was working full-time as an occupational therapist. When I was 24 I was diagnosed with a malformation in my brain stem and, in removing that, I actually had a stroke, a haemorrhagic stroke, and went into a coma. And so therefore woke up with quite a few deficits including pain, chronic pain, and underwent quite a few years of rehabilitation. That was 11 years ago now.

Chris: Eleven years. That is quite a while. Pain has been a major challenge for you in that time.

Emma: Yeah.

Chris: Has it changed much over the 11 years?

Emma: Definitely, with reflection. It's definitely something that's been very prevalent over a decade now but it is something that, as time has gone by, the experience I've learned, what my body's telling me and what strategies do work for me. It definitely is not just adapting to my new life as a stroke survivor, but also really factoring in more of a holistic approach and being mindful of the emotional impacts that pain does really present you with. Being able to accept where I was at and what I could do about that.

Chris: What sort of pain have you had and what does it feel like?

Emma: When I woke from my coma, it was just a really burning hot ... like skidding on hot concrete. So intense I didn't want to move my body and I found it really difficult, having worked in pain management as an occupational therapist thinking I knew what to do. I didn't understand fully why a lot of my own patients would not use limbs and would cradle their limbs and avoid doing activities. Suddenly when I was experiencing that pain, I realised how debilitating it was and that I had to try and move beyond that. A really difficult thing.

Yeah, so it went from that high level of pain which really clouded everything I did and really impacted how I went about activities. Gradually, over the years, learning that it was not going away and I was going to be ridding it. I came to a more, I guess, way of doing activities that helped me manage my pain a lot better and working out that in my circumstance, medication wouldn't help. But all that was trial and error, and also educating those around me about how they could help me. So yeah, many different strategies I’ve used and it took me a while to work out what helped and what didn't.

Chris: Right. You mentioned that you got activities that help you. What kind of things do you do that you find help?

Emma: Because my balance was really affected from my stroke, I couldn't tolerate a lot of the medications as I would sort of domino my balance. Because I, following my case, didn't touch my pain, I commenced doing swimming and doing yoga, which I do now. Most days I would do yoga or swimming or, if I'm travelling or I can't get out for some reason, I just do meditation. So mindfulness and really doing everything I can to ensure that I can do all I can do to manage it.

Chris: I guess as well as these things that you do that help improve the pain, you said that there are some things you find that bring it on or make it worse.

Emma: Yes.

Chris: What kind of things do you think triggers it?

Emma: It took me years to work out but I now definitely know that if I have a huge drop in temperature, it really throws me. My body interprets every sensation, I think, as pain. So if it's a hot rail, I can't feel temperature so if I'm touching it and I get a pain response. It's like an electric shock up one arm. Which is probably a good thing, in a way.

If I'm too tired, if I'm stressed, if I'm ... Basically, if I don’t have balance in my life, everything, my sleep goes, my pain goes up. So definitely, every single aspect of my life is probably a contributor if it's out of balance.

Chris: I guess that comes back to what you were saying before about accepting it and not letting it stop you because, in these circumstances, clearly you have to do something to get back into balance.

Emma: Definitely, and I think I always had the mindset throughout my recovery that I needed to rid my pain before I could get on with life. You know, many people I meet and who have chronic pain do go about their days thinking that they've got to find an answer, they've got to fix it. But I think for me, with time, I learnt that rather than putting all my energy into fixing it, I had to accept that it was there and that I could still function. I just had to acknowledge it and travel with it, rather than let it sort of dictate where I went in life.

Learning ways, and it took me ages to really accept that. It wasn't a sudden realisation. I had to practise it and live that way. But, like everything, with practise it did. I know going for a swim early is hard a lot of the time but I know I'll gain from it. So, yeah.

Chris: Is there any other advice then that, based on this, you would give to other stroke survivors who may be experiencing chronic pain?

Emma: I think there are so many things I could say about it, but I think one of the huge important things is in educating others around you to support you through it. Because I guess invisible deficits like pain, it's really hard for you and others particularly to really understand. I know people in my life around me, my close supports, know that if my pain is not managed properly, everything else goes out. So they know, and I get more irritable, I get more tired, you know? And they know that.

I guess in letting them know and getting their support, so my close family might go, "Okay Emma, go to the pool", or, “Go to yoga.” You know, when I'm in a vulnerable state and my pain is really high, that they can go, "Yep, just do it". And that's helpful for me. So I think a lot of our energy when we're grappling with managing our pain goes towards saying, "I'm feeling awful and my pain is high". Everything is focused on the pain, how awful it is and how no-one understands, and it only isolates us more.

So I think, you know, instead being proactive and going, "Yep, this is how I can control it rather than let it control me".

Chris: Thank you for that. I'll ask you to stick around while we speak to our other guests.

Emma: Thank you.

Chris: But in the meantime, anyone listening out there who wants to find out more about Emma's story, you can purchase her book, called Reinventing Emma, and it can be purchased in paperback and e-book format at her website, which is emma-gee.com. That is emma hyphen gee – G double E I should say is how it's spelt – dot com. The book is $29.99 and if you use the code RE2017NSF at the checkout, you will receive free shipping within Australia. Thanks again, Emma.

Emma: Thank you.

Announcer: Setting goals is crucial to stroke recovery. Goals can be as simple as walking to the letterbox to check the mail, or bigger goals like getting back to work.

EnableMe has a unique tool where you and your carer or family can plan what you want to achieve, track how you're progressing and celebrate your successes.

You can also connect with other people who set goals similar to yours. And challenge or inspire each other.

You can even set up a blog to write down how you are feeling and share your own story.

And don't forget, our professionals from StrokeLine can help with personalised and confidential advice to help you grow stronger after stroke. Visit enableme.org.au.

Chris: Now our next guest is Brendon Haslam. Brendon is a physiotherapist who specialises in pain after stroke. He is a faculty member of the Neuro Orthopaedic Institute and he is currently doing his PhD at the Florey Institute in Melbourne on the neurological causes and possible treatments for upper limb pain. Thank you for joining us, Brendon.

Brendon: Thanks, Chris.

Chris: Now pain after stroke, it does come in different forms. We've heard a bit about Emma's experience, but what are the main types of pain that people might have?

Brendon: The main types of pain, I think, officially we tend to turn them into that sort of coming from the tissue, so it's the normal pain that we associate in response to injury. So where there's tissue damage, the signals ... and this is referred to as nociceptive pain, where they talk about danger in the tissues.

The other, which is a complicating factor with stroke, is more the term neuropathic, where because of damage to the nervous system, the actual processing of the information that is coming in is processed in a slightly different way. So those messages can be interpreted differently and then can, for some people, really prime them to regard it as higher danger signals coming in, and they're more likely to experience pain.

Realistically, with a lot of people sort of ongoing post-stroke, we're really dealing with contributions from both types, both from the tissues and from this altered processing.

Chris: Are there other complications as well? I'm thinking of things like spasticity and subluxations and that sort of stuff where you get that kind of pain from changes in body limbs, or…

Brendon: Yeah, absolutely, and post-stroke we know that for a lot of people their awareness of their body parts and body ownership is affected as well, and that certainly can be a contribution with regards to people going on to develop pain. Spasticity, lots of muscle spasm, can I guess get firing from the tissues a little bit more. It's safe, but the signal is very, very strong.

The interesting thing with subluxations of shoulders, which are obviously quite common post-stroke, all of the thinking originally was that shoulder pain was classically because of this subluxation of shoulders. The link between that isn't actually as strong as what we first thought. There's a lot of people out there with subluxed shoulders who don't experience pain, and a lot of people that experience pain who don't have a subluxation.

So it's not a hard and fast rule. It's really a matter of looking at each person and their individual contributions, and then trying to work out what are the things that are contributing to that person responding in the way where they're experiencing pain.

Chris: Look, I'll just throw in a quick plug there for our own podcast. We did a podcast a few months ago on spasticity, so people can go to our website at enableme.org.au and track down that one if you want to find out more about spasticity in particular. But I guess I want to ask you more, Brendon, about this neuropathic pain, which is caused by the stroke itself and its effects on the nerves and the brain. Is there a particular part of the brain, a particular type of damage, that is involved?

Brendon: Look, it would be great if we could put it down as something as straightforward as that. Classically, the thinking of the thalamus, which is a bit of a gateway of processing the sensory information coming from the body to the brain, was considered to be the real cause of this neuropathic pain or this central pain post-stroke.

Again, the thinking has now needed to shift a little bit and while having damage to the thalamus or a lesion to the thalamus certainly increases the chance of someone experiencing this ongoing pain, again there are plenty of people out there with thalamic lesions who don't experience pain. And not everyone whose lesion is outside of the thalamus necessarily experiences pain or not.

So having the thalamus involved and the pathways that go through there certainly is a factor that makes someone more likely. But it's not a hard and fast rule.

Chris: We did put a call out to our listeners for questions for this podcast and we had quite a few responses from people saying they had leg pain. I know though that you specialise in arms and shoulders and that sort of thing more. Are there particular parts of the body that are more affected than others, do you think?

Brendon: Actually, this is something that is pretty well researched. There's lots of research out there saying how much of a problem pain is post-stroke. There's lots of these incidence studies and, overwhelmingly, the most common pain symptom post-stroke is with shoulder and upper limb pain in general. But really, any of us can experience pain in any part so it really depends on things. I know through EnableMe there's been lots of leg discussions, and that's a very significant part, but the upper limb is actually much more common with regards to that.

But also, people can experience multiple areas with pain so, yeah, as a general rule the shoulder is the classic first one but the incidence of other areas is very common and we just take each one on its merit.

Chris: We're talking about pain that can be caused by something that's happening in the brain itself. It doesn't really follow from that that it's all in your head. However, it does seem like there is this relationship between pain and people's mood. And we've heard from Emma that when her life is out of balance, when something is not right with stress or something like that, then that could cause pain as well. Is there a cause and effect relationship, do you think, between these things?

Brendon: There's definitely a relationship there. I guess just to jump on this idea of "it's all in your head", I think is a really dangerous sort of thing to say, I think. Certainly, the experience of pain is created by the brain based on the information that is coming into it. So if the information is coming in and is processed in a way where there is an idea of danger to those various body parts, then it's a logical conclusion for someone to experience pain.

When we start to go into things like mood, it's really well detailed actually that people with low mood, in chronic pain generally outside of the stroke population, there's a strong association with low mood and ongoing chronic pain. If one causes the other, it can work both ways. What we do know is that having chronic pain is not good. It's not fun and therefore it's quite reasonable that people would go on to, for some cases, experience depression. Also, we know that those with depression have a higher likelihood of developing ongoing pain.

I think one of the big things to understand with regards to low mood is that the chemical balance in the brain starts to change from a release of endorphins or 'happy hormones', or things like that. Lots of different sorts of chemicals. They are produced when people are actively engaged in meaningful activities and particularly in enjoyable activities. If that is reduced, then that chemical balance starts to change. But also, that chemical balance is really important as a way of quietening down some of the information that's coming in from the body.

So in low mood states, we tend to lose that ability to quieten down some of the information. So that information coming in from the body is perceived in that louder state and more threatening. So we really need to engage in these meaningful activities, as Emma was saying.

Chris: With these types of pain, what sort of things can people do about it?

Brendon: In looking at what to do with regards to pain, Emma really hit it on the head. It needs to be holistic. We can't just take a single approach, we need to look at things across the board. First of all, we need to assess to make sure that there hasn't actually been tissue damage, okay? Stroke survivors, like any of us, can suffer injuries and sprained ankles and various things, so we still need to look at that to exclude that that hasn't happened.

Then it is about assessing what's going on and what are the different contributions that are going on. But from a treatment perspective, looking to educate someone, trying to develop an understanding of what triggers it, what is more comfortable, looking at a psychological component. So getting people engaged in tasks like meditation, mindfulness, yoga, combining the physical sort of things as well, and engaging in meaningful physical activities. so that we get the system primed to be able to take on more. Okay? Help with mood. Help with some of this production of other hormones.

But then there are some specific physical strategies that we can also look at now, and some of this idea of the sensory information being processed slightly differently. What we're seeing is that in situations there's some medication studies that are going on in Europe, where the sensory system has been showing that the better the sensory system is, the more effective some of the medications are.

So we can start to tailor things and we need to look at addressing the sensory system to try and get everything going as well as it can, so it can tell the difference between hot and cold and it's not so threatened by some of these other things which, if it doesn't understand, it has a much higher threat value.

Chris: Look, I'm going to ask you about some of the techniques that you've used in your own practice. But just some of the things that we might turn to initially, we're looking at medications and those sort of things. Generally, are there painkillers and things that can work, or is it not the path to go down for this kind of pain?

Brendon: Most of the research that is out there is looking at medication studies, and certainly in chronic pain in general, there's a shift in medications to go away from those classical opioids and things like that to look at more medications that look to quieten down the nervous system. And that's the same with regards to pain post-stroke. There are medications out there that unfortunately have been named by their first use, so anticonvulsants and antidepressants, that seem like they're addressing something else but that have been shown to have effect with regards to pain.

Unfortunately, many people post-stroke, just like Emma's saying, have difficulty tolerating those medications because they tend to quieten down the whole system and can leave people quite fatigued, and different things like that. For some people these medications can be really effective at quietening down the system, helping with the processing of that information. But we need to be mindful of the side-effects for some of those people as well.

Chris: How about other things people might ... I suppose if they've got a pain in their leg, for instance, or in their arm, they might think about having a massage of those muscles. Is that any use to them?

Brendon: In ongoing pain states, so in chronic pain, we know that massage, things like that that can quieten down the tissues, and use of heat can be really helpful in providing short-term relief. For that longer-term effect, we need to actually make sure that we engage the person and that we get the brain and their nervous system to not only hear information coming in, but to do something with it. Whereas massage or use of heat is a passive thing, people lie there, what we'd be looking at is that maybe use of massage or heat can produce a really nice short-term effect. But we'd then want people to engage in starting to do some of those other activities as well to start to try and change the system and activate that active system that we need to be able to self-regulate and quieten down the information.

Chris: Emma, I believe you have something that you wanted to ask.

Emma: I just wanted to ask Brendon, there was in my experience with my pain, you were speaking before about the prevalence of upper limb pain more than lower limb pain in stroke studies. I myself have more, it's all left-sided pain, but I found that over the decade or so I've dealt with my pain that it has actually shifted. So whereas it was once worse in my lower limbs, it's now a lot worse in my left hip. Is it fair to say that that happens?

Brendon: Absolutely. It's actually quite common that people's symptoms change with regards to things, as they're doing things, because also their activity has changed. They engage in different things and they utilise different body parts in different ways, particularly when people aren't walking as much. To start with, they're not getting as much information coming in and using that information in that output of different movements.

We know that as people's activities change and what they engage in, that it is actually really common for their symptoms—just like their movement performance to change and improve—we know that their symptoms can change in one way or another. This is actually really common in chronic pain for non-stroke populations as well, is that we start to get more of a spread of pain to include other surrounding areas and other sides even, sometimes.

And depending on the activities, the danger system and that experience of pain will shift, based on what's being engaged in.

Emma: I think, as Chris said before, is there something that you would recommend to other listeners? I think for me, as a stroke survivor, hearing, knowing that things were going to change, that I would adjust. Because it's really important in my recovery if I'd have known that when, two years into my recovery, I was laying on the ground and couldn't even lift a pillow because my pain was so high, and went to look into so many other treatments like deep brain stimulation to help manage that. Which I didn't go ahead with. If I'd have known that it would settle and that I could do my activity and it would change, that would have been really helpful at the time.

Brendon: I think this is a crucial sort of thing. When we're looking at being effective therapists and health professionals engaging in the area of pain, the most important thing that we can do to start with is educate...

Emma: Yes.

Brendon: ...about what is going on. The more that it is a mystery, the more scary it is and the more unknown and that we lack control, we lack the potential to have control. So the fundamental thing that is coming through in lots of different groups with chronic pain is the most effective thing is education first. Even just with providing education, what we see is then some of those other therapies, like physical therapies and psychological strategies and medications, then start to become more effective.

Emma: Yes.

Brendon: Because people understand what they're trying to do and that we're looking for that change over time. So the key thing is this understanding and that's what we really need to be getting the message out. Which is why I'm so excited about today.

Chris: Well, I suppose this is a good time to talk about some of your own research, Brendon, because this is helping to expand our understanding and our knowledge for survivors as well as their health professionals. What kind of things are you working on at the moment?

Brendon: There's two main studies that I'm certainly involved with. One is actually a sensory training study that we're running here in Melbourne at the Florey Institute with people with sensory deficits, particularly in their upper limb, and looking at the influence of training that sensation to be better for people to be able to pick out better differences and things like that. And see how that affects their sensory functions but also with regards to their pain. The exciting thing with that is that we're able to provide a treatment intervention for it, and the effect is measured at periods over time. Which also includes the use of functional MRIs so we can actually see the changes in brain activity as they're performing different things and see how good they are at using those particular bits. But also at their ability to maybe quieten down some of the other areas, because we know that in pain it's a bit like a fireworks sometimes with the whole area sort of lighting up.

That's a really exciting study that we're doing here. Another study that we're leading is an online study really looking at, as Emma was saying, a lot of the treatments were based on trial and error. Let's try this to see if it works, let's try this to see if it works, and find some things like that. What this study is, and it's an online study so I urge anyone with stroke pain or without pain to participate, is trying to identify the different contributions that are going on and start to develop profiles of psychological contributions, sensory contributions, but also the ability of body ownership and being able to recognise different areas of their body, and start to own that, so that we can ultimately—sorry, as well as with their medication use—so that we can ultimately start to identify which potential treatments might be more appropriate for a particular person, based on their symptoms.

There's been some really nice research just published about a month ago looking at the use of imagery techniques. So mental imagery, this motor imagery and use of things like mirror box and stuff like that. That's giving us another avenue that we've been using for a while, but we still need to be able to identify who is going to respond best to what, so that it's not just all trial and error. This is really replicating similar stuff that's been done in medication studies where they're looking to develop these profiles. So that's a really exciting thing, but to get effective of that we need some pretty big numbers to be able to make those comparisons and really develop this effective targeted strategies that we're after.

Chris: It's interesting that it is so individual and so targeted. I'm obviously not saying that anything we talk about here is a good treatment... everyone is different and will need a different approach. But can you explain a bit more about some of this imagery techniques and the mirror box? What does that mean and how does that help with pain?

Brendon: I guess the mirror box is the classic example that gets a lot of media attention, and it's been used in TV series and in various sorts of things. It was initially utilised for people with phantom limb pain who had a missing limb but continued to experience pain in that part. The use of the mirror is actually giving visual information where the person sees that that limb is still intact. They see the reflection of the other side and, actually, we know that that activates the area of the brain associated with the missing part.

In essence, we're really trying to train the brain, get into that area in ways that would otherwise be quite difficult, and try and improve the ownership and the organisation of that so that it's able to process again this information and more towards a normalised sort of situation. So there's some really logical references with regards to stroke in this thing. In this sort of situation, not many people can go straight into mirror box therapy. A lot of people find that quite challenging and it can be a bit overwhelming.

There are a number of stages of imagery that we can do along the way so that they potentially can get a better effect from the mirror box treatment as well. So we're trying to really marry the imagery techniques, as I've just discussed, along with the sensory techniques to try and improve people's sensory abilities to pick the information out. All of it is about creating better body ownership of the affected area in order to be able to understand it, utilise the information better. And better responses, better experiences.

Chris: Recognising that parts, that is part of your study, that you're looking for people to take part in the survey?

Brendon: Absolutely, so very much designed to complement some of the other studies that are going on, really to be able to target, okay, who's going to going to respond best to what?

Chris: We will put more information on how to take part in that project on our website. You can find it on, I believe it's on the Neuro Orthopaedic Institute website at research.noigroup.com. Is that correct?

Brendon: That's right, that'll take you. There's a link there that will go to the stroke laterality study which is the one that we're doing. Yeah, thank you for putting it on the website. That'll be a really nice thing.

Announcer: When you or someone you love has a stroke, you are instantly bombarded with a whole lot of medical terms. And it's pretty hard to take them all in. It's like learning a whole new language.

To help you, we've created Strokasaurus, a glossary of stroke terms. It's an A to Z guide of the language used around stroke. From atrial fibrillation to webster pack, it explains key terms in simple language. You can access it on your computer, smartphone or tablet, at enableme.org.au

Chris: Finally today, we have Simone Russell, an occupational therapist and one of the voices that you can hear on the Stroke Foundation's StrokeLine. Thank you for joining us once again, Simone.

Simone: Thanks, Chris.

Chris: We've heard from Brendon as a physiotherapist, but you are an occupational therapist. What can OTs like yourself, what role do you have in helping people manage pain?

Simone: We like to work, obviously, as a team anyway, but as an occupational therapist in particular we will look at the whole person. So, as both Brendon and Emma have touched on, a really holistic approach. Looking at, really, I guess how the pain is impacting on their day-to-day activities and their quality of life. Also their mood, that's been touched on already. And looking at some of the things that have been mentioned. You know, the location of the pain, is it an acute pain issue or is it something that is going to be a longer term neuropathic pain?

You know, what are the triggers? Is it change in temperature, as Emma has experienced? Is it fatigue? Stress? All sorts of different factors might come into what might trigger the pain, and really working with the individual to come up with appropriate strategies and also a routine that works for them. I think Emma's really touched on what works for her and given a really good example of how that has helped her to manage her pain, but to also live a better quality of life rather than letting the pain rule her.

We will also implement strategies that Brendon has touched on, so that might be mirror box therapy. It also has a large component of education really, informing the patient about what's happening at a brain level with the pain perception, and also looking at other strategies that might be relevant for that person.

Chris: It sounds like one of the challenges, though, is getting someone to help you with the pain, someone who understands how it works. The question we've had, a lot of people have trouble explaining to their health professionals what they're going through and getting that understanding. How can people find someone to help them with their pain?

Simone: Yes, it is a really common enquiry we get to StrokeLine and also on enableme, and through our Facebook page. I think that there is still a lot more education that's needed around pain, particularly in the area of stroke, and I would say yes, GP is often a good starting place. But if you're not finding that you're getting anywhere, if you are still involved with a rehabilitation team or if you have a rehabilitation physician or doctor that you're seeing, they can be also a really good starting point.

If you're a little bit further down the track after your stroke and pain is continuing to be a concern for you, and you're not getting anywhere with your current doctor, I would look at contacting Pain Australia, who have a great list of pain management clinics. You can get a referral to a pain management clinic. You can also call StrokeLine and we can help brainstorm what might be the best option for you specifically, depending on your location, your state, what services are around you.

Often, even in smaller country areas, there may be someone that's well known for working with people with pain, or at least working with people after stroke that we can at least get them linked into.

Chris: So the people are out there, it's just a matter of finding them?

Simone: Exactly. That's right.

Brendon: Also, this is a real priority for us is educating health professionals. Allied health, medical, nursing, across the board with regards to this about pain in neurological conditions such as stroke. There is now more of an educational push as we start to roll some of that out. So hopefully that will become more and more common.

Chris: It sounds like it's a rapidly developing area and there is a lot of knowledge for people to keep on top of.

Brendon: I think so. Hopefully we're seeing an end to the days of, "You've got pain and you've had a stroke, deal with it." That's no longer a good enough answer now and we need to be better and we need to be able to provide advice and offer strategies, and that is a bit of a cop-out now I think.

Chris: Yeah, well that's a great message that we hope gets across. Simone, what are your top tips that you would want stroke survivors to take away from this podcast today?

Simone: I think that Brendon and Emma have captured a lot of the top tips that I would also cover with stroke survivors that call in to StrokeLine. But the first one I would say is don't go it alone. I think a lot of people out there in the community living with pain feel very isolated. Many feel misunderstood. They don't get the support, perhaps, from the people around them or from their doctors in some cases. They don't really feel that there's, I guess, a positive outcome for them.

So I'd say don't go it alone. Get help, whether that's through experts working in pain and stroke management, whether that's face-to-face peer support through a peer support group and really talking to other survivors who may be experiencing pain themselves. As well as our online support as well. So we've got EnableMe as a great source of support. There's some fantastic conversations on there around pain and what works for different stroke survivors. I know, Brendon, you're also on there as well, so there's a range of supports that I would suggest, but certainly working out whether face-to-face or online support is an option. But getting that support really helps.

The second one would be, which has also been touched on, is really educate yourself. Pain can be complex and if you're new to stroke and you're new to pain, it's something that does require a little bit of education. There's certainly education available out there. Once you get the right access to that education, it really helps you to understand and map out a pathway for you to manage the pain.

That, as I said, can be working out what's the cause of the pain, what's the type of pain I'm experiencing, is medication an option, are my medications working? Is there a study I can participate in that might actually give me some extra benefits and strategies that I can use?

And looking at all of those strategies that we've touched on, in addition to medication but yoga, mindfulness, physical exercise is really important, as we've touched on. And some of the more psychological help, so cognitive behavioural therapy and distraction techniques, as well as the motor imagery and mirror boxes, other options as well. There's so many options and I think having education to work out what might be the best option for you is obviously something that's important.

Third tip is really around knowing what works for you. This is touching on from, I guess, the second tip as well. So finding out, listening to your body, starting to notice what does work for you. And I think Emma has painted the perfect picture of, you know, she knows when things are out of balance that the pain also increases, and that keeping that life balance is so important. Trial and error is sometimes unavoidable for most people in their pain journey, but we're hoping with more evidence and research that that will become a little less of a trial and error or hit and miss in the pain journey. But it could be different from one person to the next, as well, so understanding that each person is individual and really taking that holistic approach. As we've touched on, sleep, even diet and what you eat, stress levels, all of those things come into play at well.

My last tip would really be just to be kind to yourself. You know, it's not easy when you're faced with a stroke, first of all. But then to have pain and potentially chronic pain on top of that, particularly if it's debilitating, it's a big challenge for a lot of stroke survivors in addition to all of the other factors that come into adjusting to life after stroke. So I'd say be kind and compassionate to yourself and make sure you do reach out for support, whether that's through peers or through health professionals and experts in the area.

Chris: Thanks, Simone. That is some excellent advice and does really fit in with the stories that we've heard from Emma and Brendon as well. Now, if anyone wants to ask further questions of Simone and our other health professionals, they can call StrokeLine on 1800 787 653 or 1800 STROKE, or I believe people can ask questions via enableme.org.au as well.

That's all we have time for today. If you like what you've heard, please help us out. You can give us a good rating and a review on iTunes. We'll also be holding an online chat on this topic so that you can ask your own questions. If you register as a member at enableme.org.au you can get an email alert which will tell you when the chat will be held. You can also find transcripts of our previous chats we've had on other topics. They're also available on the website.

Thank you once again to our guests. We've had Emma Gee, Brendon Haslam and Simone Russell. Remember, you can buy Emma's book Reinventing Emma at her website emma-gee.com, and if you use the code RE2017NSF at the checkout you can receive free shipping within Australia. And of course, Brendon's study, looking for as many participants as he can get to help him with his research. That can be found at research.noigroup.com, and we'll put a link to both Brendon's and Emma's website on our podcast page.

Thank you again, Brendon and Simone and Emma.

Simone: Pleasure.

Brendon: Thanks very much.

Simone: Thanks, Chris.

Announcer: That's all for today's EnableMe podcast. You can find out more on this topic and continue the conversation or listen to other podcasts in the series at our website enableme.org.au.

It's free to sign up and you can talk with thousands of other stroke survivors, carers and supporters. We also have health professionals from StrokeLine who can answer your questions and give evidence-based advice.

The advice given here is general in nature and you should discuss your own personal needs and circumstances with your health professional. If you would like to suggest a topic or provide feedback, contact us via the website enableme.org.au.

The music in this podcast is “Signs” by stroke survivor Antonio Iannella and his band The Lion Tamers. It was recorded at Antonio's studio, which you can find out more about at www.studiofour99.org.au.

This EnableMe podcast series is produced by the national Stroke Foundation in Australia with the support of Allergan.

Announcer: At Allergan, we know every stroke is different and so is every recovery. After stroke, many people have muscle weakness and loss of movement. But you might also be experiencing tight muscles or stiffness in your arms, fingers or legs. It's called spasticity. 

You might have muscle spasms or uncontrollable jerky movements in your arms or legs, changes in your posture or unusual limb positions. And it can cause pain. It can be treated though. Physiotherapy or occupational therapy can help you adapt and improve your movement. There are other possibilities too, such as injections with botulinum toxin type A, electrical stimulation of the muscles, electromyograph or EMG biofeedback and muscle relaxing medication.

What is important is to start your rehabilitation as soon as possible after a stroke, and to discuss your goals and progress with your rehabilitation team at every stage. Allergan is proud to bring you this EnableMe podcast.