enableme online chat transcript: Pain after stroke

Chris Lassig
Hello everybody, the chat will start in 9 minutes so get your questions ready.
Diana
Hi Em
Emma
Hi Chris, I'm hoping my eyesight & typing will keep up with this conversation! I'll do my best;) Looking forward to it
Emma
Hi Diana
Chris
Hi Emma, great to have you here!
Emma
;)
StrokeLine
Hi everyone :-)
Brendon Haslam
Also, high to everyone, looking forward to a great session
Chris Lassig
Hi everybody, our chat on pain after stroke is now live.
Joining us online today is physiotherapist and pain researcher Brendon Haslam, inspirational speaker and young stroke survivor Emma Gee, and occupational therapist Simone Russell from StrokeLine.
As usual, we ask that you mention the name of the person you're replying to when you type, so that we can follow who's talking to whom.
Emma
Thanks Chris;)
Chris Lassig
You're welcome Emma
stay@peterallenmotorinn.com
How long can I expect muscle pain/discomfort to last after a brain stem bleed? Any ideas for treatment?
Chris Lassig
Hi stay@peterallenmotorinn.com, we'll be kicking off in 5 minutes, so your question will be answered then.
stay@peterallenmotorinn.com
Suzanne is stay@peterallenmotorinn user. Hi everyone
Chris Lassig
Sorry Suzanne - welcome to enableme!
Emma
Hi susanne:)
Emma
Hi Suzanne, To respond to your query about how long to expect muscle pain/discomfort to last after brain stem stroke. I think it’s so important to remember that everyone is different. I had a brain stem stroke 10.5 years ago & still experience pain. However, have adapted to this overtime & my relationship to it has changed;)
Brendon Haslam
Suzanne, thanks for your question, regarding muscle pain post brain stem bleed. The big thing in the early days is to make sure that you continue to have plenty of opportunities to touch and feel things in the area of discomfort, and also where possible, the opportunity to use the muscles intermittently, so that they have plenty of on/off moments, without overdoing it. Plenty of normal inputs, opportunities for rests, and opportunities for doing things little and often. There's no set time frame, but we certainly want to prevent the pain/discomfort from becoming chronic.
Some of the sensory strategies looking to improve sensation are quite effective in decreasing the overall sensitivity as well
stay@peterallenmotorinn.com
Thank you. I try to stretch and move often during the day sometimes better often not. Is it pain or unusual sensation?
Brendon Haslam
Suzanne, whether it is pain or unusual sensation depends on what you experience, many people have unusual sensation but don't report pain. We know that the better people's sensory abilities are, and the ability to feel the difference between things (discriminate) have a significant impact on people's pain. Pain itself is not a hardwired sensation, it is more of an experience consisting of many different things, that's what makes it so tricky.
Emma
Hi Brendon, I also found in the early stages of my stroke recovery, sensory activities were really effective in desensitising my pain. i.e. putting my left hand in rice / exposing it to new sensations...
stay@peterallenmotorinn.com
Emma, you said you adapted to your pain over ten years, how did you adapt?
Brendon Haslam
Thanks Emma, absolutely. What is becoming clearer is that we need to go further than desensitising (exposure to sensations) and actually demand that the person needs to do something in response to that stimulus - even if it is just saying what it is (i.e. that the sensory information is processed, and understood), then it becomes more potent
StrokeLine
Hi Suzanne, When was your stroke and where are you experiencing most of the pain and discomfort currently? Are you finding anything helpful so far in your recovery and managing pain? Are you still seeing a team of health professionals for rehabilitation or pain management? Emma makes a great point on the podcast about how her pain has changed over the years as has her management of it. It can take time to find what works best for you, would you agree Brendon?
Brendon Haslam
Further to strokeline: things are always changing and that can be both positive or negative. Through life our interests and abilities change, and this will then affect what situations we deal with, which areas of our body we use, and what skills we develop. It follows that then we need to handle different information, and that pain experiences may change in nature, or even in location. It is important to be able to address the things that are going on at that time, and often that is best done by a guided therapist with pain experience in order to introduce potential strategies.
stay@peterallenmotorinn.com
Thanks strokeline my bleed was 2 years ago now. I lost all sensation on my right side, but now have pain and pins and needle feelings. I struggle to walk as my balance is very poor so need and have regular physio sessions and attend yoga and balance classes. My initial list of deficits is too numerous to mention and my recovery is at the speed of a glacier moving.
Emma
Thanks Brendon, so true of the ever changing nature of our lives - my situation and pain levels have varied a lot but I think amongst those inevitable changes, learning overtime the triggers for my pain and what helps, really grounds me. It took me years to figure this out (I’m still learning!)
Brendon Haslam
Thanks Suzanne, firstly the increase in your sensory abilities is encouraging, we are always able to make changes (no matter what people tell you about time frames), learning is ongoing through life. I think it would be great to try and access some sensory retraining strategies to see what further learning you can achieve.
stay@peterallenmotorinn.com
Thanks Brendon. What do you mean sensory retraining strategies? Where do I find?
StrokeLine
Thank you for sharing Suzanne. It is wonderful you are still seeing a physio and attending yoga and balance classes. As Brendon has mentioned it would be useful to access sensory retraining as part of your therapy. Is this something you could ask your physio about incorporating into your program or referring on to an occupational therapist if the physio is focusing on your walking and balance?
Brendon Haslam
Hi Suzanne, there is a program called SENSe which is an evidenced based sensory program that was developed by Leeanne Carey at the Florey Institute
stay@peterallenmotorinn.com
Learning to walk again is my main goal. But I guess my balance ability and often my pain in right leg and arm are quite distracting.
Thanks Brendan I'll look it up.
Emma
Hi Suzanne, It's amazing how much you do get used to your body & how (even though many are told that recovery stops after a certain timeframe) we continually grown. Only yesterday I was able to stand in a split stance in yoga - I wobbled a lot but it's hugely about giving it a go, persisting - tough but neuroplasticity is amazing!
Hi Suzanne, whatever your goal might be, be gentle on yourself - something that I try to remind myself daily to do;)
stay@peterallenmotorinn.com
Emma I am determined to find a way back to a normal me and will be open to any initiatives to help that process. I have learnt in the last 2 years that this is not going to happen overnight.
Brendon Haslam
Rewarding yourself is also important, make sure you make the time for good things.
StrokeLine
Suzanne, what state do you live in? Your pain would no doubt be influencing your walking and worth looking into more. Juggling priorities and goals in your recovery must be challenging. Emma, do you have any suggestions for Suzanne on how you've managed this? Being gentle on yourself and rewarding yourself are so important, great points Brendon and Emma.
Brendon where can people like Suzanne find more details about SENSe?
stay@peterallenmotorinn.com
i live in NSW in a small town Tenterfield
Emma
Great to hear your determined Suzanne, an attribute that I think helps a lot in one's recovery! I found that accepting what i couldn't change but changing what i could was & is so important. Not expecting a sudden cure for my pain & relying on it to go to be happy, but rather accepting & acknowledging it's presence but doing my best to enjoy life with it there 'now'
Brendon Haslam
If people go the Florey website (www.florey.edu.au), they can go the stroke division and SENSe therapy through that page. There it will detail the therapy, but also provide a contact if people have any queries. Currently there are training sessions for therapists being conducted in order to get the message and skills out there. We'll look to include the actual link in the transcript
Chris Lassig
We'll put links to the Florey and other resources in the chat transcript.
Diana
Hi Emma I am interested in hearing about how you manage your pain daily?
Emma
Hi Diana, I find that in my daily routine I incorporate activities to manage it like swimming & yoga. Moving I've found really helps and has big emotional benefits too. Meditation is another means of pain management for me.
So activities in my day where I can control it, rather than let it dictate my performance/ how that day pans out?
StrokeLine
Hi Emma, I'm interested to know more about what type of meditation you practise and what that looks like? I think that might be helpful for others too. Is it more mindfulness, do you allocate a set amount of time each day?
Brendon Haslam
In response to strokeline: the key is to find a method that is meaningful to each individual. Some people find great results by engaging in mindfulness, others yoga, relaxation strategies or even gentle movement arts like Tai Chi. The key is that the person finds purpose and meaning in the performance of the task itself. This is going to be most effective if it is practised regularly as part of a routine.
Emma
Thanks Strokeline, I travel a lot so my 'normal' means of managing my pain does mean that when I'm away from my usual environment & routine, I have an meditation app called headspace - amazing. It's guided meditation!
Brendon Haslam
I love the headspace app! There are other similar ones available. Smiling minds is also worth looking at
StrokeLine
Thanks Brendon, great points about strategies needing to be meaningful, particularly important for encouraging consistent participation.
Diana
Hi Emma, you talked about your emotions being important in how you manage your pain. What did you mean?
Emma
Hi Diana, in referring to 'emotions' when dealing with my pain, I mean looking at your pain holistically. I think it's easy to stop doing things when we have pain as we physically don't want to make it worse but the emotionally impact of that mindset is HUGE. Being scared to move means we stop ourselves from participating in life, perhaps we become isolated & our confidence to drop - does that make sense. We need to consider or thoughts in holistically managing our pain I think..
I think for me, when my pain levels are higher, the effort to manage it it is harder! I'm more sleep deprived & unmotivated so going to a yoga class or knowing I can listen to guided meditation 24/7 as a back-up is reassuring.
Brendon Haslam
Emma, you highlight an important point, with the link to pain and effort. We know that pain is obviously very distressing, and can contribute to ongoing stress, but also that ongoing stress contributes to pain, it is a two way thing, and we need to address whichever point we can in the different environments that we are, so the mobile links/apps are great
Emma
Very true Brendon, managing that balance is an ongoing challenge for me. For example, just this Sun I slept little due to pain, due to weather & subsequently was so tired monday & more irritable. Whilst moving helps me, I chose to do a meditation & go shopping - do more distracting activities. Swimming would've made me more tired & likely heightened my pain.
Chris Lassig
Just a reminder for those following the conversation, please ask any questions you may have.
Hi everybody, we have 20 minutes left in the chat, so get your questions in now!
Brendon Haslam
Another thing for people to consider includes potential use of psychologists to help in developing strategies, such as mindfulness. Other approaches can include things such as graded motor imagery, which has just had a positive result published in a small pilot study that they did. There are increasing numbers of therapists in Australia who are trained in Graded Motor Imagery, so that is worth looking into.
Emma
Strokeline - I'd suggest to Suzanne that it's great to learn, even take a diary, of what triggers your pain - also what helps. Although we don't want our lives to be ruled by it, i think becoming aware of what helps & exacerbates it is really effective. Also so we can educate others. I did this daily for a while & learnt that in fact I'm better moving early, the weather changes hugely impact me etc knowing this I can plan my days better - does that make sense
StrokeLine
That is a wonderful achievement Emma! It goes to show recovery doesn't stop, you are living proof of this. I've also found some don't see or notice the subtle changes or improvements as much as family, friends and therapists might. Getting their feedback can be helpful to encourage you to keep going.
Emma
sorry i'm a slow at typing:)
StrokeLine
Fantastic advice Em! Thank you :)
Emma
Feedback is a good means in knowing what you're body is telling you & what you can do about it. I saw overtime that by looking back on my progress I (& others around me) could see patterns & improvements.
Ahmed Khan
Thanks Emma..Yes I have a note pad that I record what triggers the pain and what activites I can tolerate.
Brendon Haslam
I think a huge thing is also in education of ourselves and others
Leah
Here in the StrokeConnect team we encourage stroke survivors to look for triggers for their pain. Everyone is different. Fatigue and stress can play a big part, as can changes in routine. It sounds like despite a lot of regular change with your travel Emma, you have a good routine that helps in the management of your pain, and have worked out what works for you. Having the support of family and friends is really important.
Emma
I do speak about my thoughts & experiences re pain in detail in my book, 'Reinventing Emma'
Chris Lassig
Thanks Leah, it's great to have your perspective, and welcome to the chat!
Brendon Haslam
Whoops, pressed the button too early. Education is important to understand that having pain does not necessarily mean that the body part is injured. Often post stroke, the processing of information is altered, so some information gets understood as being threatening, when actually you are perfectly safe in what you are doing. Pain does not always mean injury (and often doesn't). Each time we have people experience pain, it is worth them asking "Have I just done anything that makes me think I have injured myself?" if the answer is no, then it can be quite a relieving thing in itself, to know that although you may be sore, you are safe.
Chris Lassig
Welcome to Ahmed too, and thanks for your tip.
Brendon Haslam
In addition to Emma's book, there is a great book called "Explain Pain" by Butler and Moseley, but I think this book is most helpful when people are guided to it with support of a therapist with good knowledge about chronic pain, in order for it to have full impact.
Emma
Hi Leah - yes, I feel reassured now that when I'm out of my normal routine & in a random environment where I can't control so much, there are things now I can do that I know will help. For example, next week I’m working in New Zealand so I'll take my own pillow as that helps me sleep (which I need to manage my pain)... Its a lot about planning ahead i think. Even for me, travelling solo is hard, so I've even had friends collect me international custom slips to get my family to fill out ahead - as I find hand writing taxing and only heightens my ataxia, pain etc etc
StrokeLine
I highly recommend the Explain Pain book, it really helps to understand pain in more detail and in simple terms.
Emma
Brendon, you mentioned the importance earlier about education. I think 'invisible symptoms like pain are really hard for others (& ourselves) to understand. Knowing your triggers means that we can also educate people around us so they feel they can help. As I’m quite 'physically' impacted many people understand if I'm tired or in pain but I think this lack of understand for many survivors that don't have visible deficits, is a big frustration.
Ahmed Khan
Thanks Emma, Yes your carers and people around you should know what triggers your pain and what precautions you taking
Brendon Haslam
This invisible symptom point that Emma makes is really important, and I think highlights the concept of "efficiency" of movement, function, etc. The more efficient that we can take on daily things, the less that this will contribute to ongoing stress states, and invisible symptoms like pain.
Emma
True Ahmed, especially as (not to excuse it) but in knowing that maybe your more irritable they are perhaps (??) more tolerant. My close networks often will say, 'Em definitely go to yoga" when I’m too tired because of my pain or if I'm stressed as they know It'll help me
stay@peterallenmotorinn.com
Thanks for all the advice and info. Thanks enableme you do a great job.
StrokeLine
For everyone: You can find a psychologist either via a pain management clinic or privately. If working with a private psychologist it is important to ensure they have experience in working with pain. You can find a pain management clinic here: http://www.painaustralia.org.au/for-everyone/pain-clinics.html
Most pain management clinics have a multi-disciplinary team made up of physios, occupational therapists, doctors, psychologists and in some cases nurses.
You can find a private psychologist by clicking on ‘general health’ as the issue and selecting ‘pain management’ here: http://www.psychology.org.au/FindaPsychologist/
You can see your GP for a care plan to access Medicare subsidised sessions.
Chris Lassig
Thanks Simone (StrokeLine), I'll make sure those links are active in the chat transcript.
StrokeLine
Thanks Chris, that would be great. If we could add a link to the book too that would be helpful. People can also request their local public library get the book in if purchasing a hard copy or electronic copy is not an option.
Chris Lassig
Can do, Simone.
http://www.noigroup.com/en/Product/EPBII 
Emma
The meditation application I spoke about earlier can be downloaded here - https://www.headspace.com/register/free-trial
oops - not sure if that link worked!
Chris Lassig
No worries Emma, we'll check the link for the transcript.
Ahmed Khan
Emma, I just downloaded the app.
StrokeLine
'Simply Being' is also a good app.
Chris Lassig
That's the end of our chat today. Thank you to everyone for an hour of interesting conversation.
Thanks especially to our special guests, Emma Gee and Brendon Haslam.
Remember you can purchase Emma's book, "Reinventing Emma", at her website http://emma-gee.com. Use the code RE2017NSF at checkout to get free shipping within Australia.
You can take part in Brendon's online study on upper limb pain at http://research.noigroup.com/?_p=stls 
Ahmed Khan
Thanks you every one
Chris Lassig
And you can find out more about the SENSe program at the Florey Institute at https://www.florey.edu.au/Neurorehabilitation-and-Recovery-Group. 
If you have any other questions on this or other topics, please call StrokeLine on 1800 787 653.
Emma
Thanks Everyone ;)
StrokeLine
Thanks everyone, great conversation :) I love your preparation tips for travelling too Em.