enableme online chat transcript: Fatigue

Sue Mahony
Good afternoon everyone not sure I'm doing this right.

Dianne Speed
Afternoon.

Brenda
Sue, I am a first time chat user.

Sue Mahony
Same here, Brenda.

Dianne Speed
I am first time as well.

Mary Caran
First time too, hope I can be of help.

Brenda
Then I am in good company.

Sue Mahony
Likewise.

Simone - StrokeLine
Good afternoon everyone :-)

Richard
Welcome to the first ever enableme online chat! Sorry about the delay getting started, but we're ready to go for the next hour.
Following on from our most recent podcast, today we’ll be talking about fatigue. This is a problem that many people struggle to live with and to explain to their family and friends.
Joining us online we have two of the guests from our podcast, stroke survivor Brenda Booth and occupational therapist Simone Russell. Simone will be representing StrokeLine today.
Not joining us is our other podcast guest, Toby Cumming. Unfortunately he’s stuck in Honolulu due to a flight cancellation and can’t get online.
Instead though, we have the honour of welcoming Professor Julie Bernhardt, who is Head of the Stroke Division at the Florey Institute of Neuroscience and Mental Health. She is one of the world’s leading researchers in stroke recovery.

Brenda
Hi Julie.

Sue Mahony
Welcome Julie.

Julie Bernhardt
Hi All, I'm in now.

Richard
To take part and ask a question, simply type in the text box at the bottom of this chat screen.

Brenda
I am 15 years post stroke and still experience fatigue

Richard
Welcome Julie!
And welcome to everyone else who's joined us.
To get us started, I thought I might ask Julie about your work which I believe uses exercise in stroke recovery. Do you find that helps fatigue too?

Julie Bernhardt
Thanks Richard,
Yes we're increasingly interested in the challenge of fatigue in survivors of stroke. Exercise is just one of the areas where we need to understand the relationship between activity and fatigue, when you should exercise and when maybe to have a break. Toby Cumming is running a study right now that will help to give us information.

Mary Caran
I am 10 years post stroke and have learned to identify triggers for fatigue. It’s funny because I learned early on that exercise and pushing the body over its comfort zone helped retain my brain and body physically.

Richard
Mary has also asked about using exercise to push through her comfort zone. What do you think about pushing through?

Dianne Speed
I'm 28 years post stroke today l have learnt to listen to my body and slow down and rest as required

Diana
Great advice Dianne Speed here is a link to a great chat on here in the site http://bit.ly/20ycXNY

Julie Bernhardt
Hi Mary, if I can take that one.
We've talked to a number of survivors about the strategies they use to manage fatigue. In some cases we hear that going for a walk can make them feel better, even though they can’t think of anything worse. For others it might be horse riding, a gentle swim or do some other type of exercise.
We don’t really understand who this works for and who it doesn’t. There is good research evidence that moderate exercise programs can help fatigue in other conditions. We need more knowledge for stroke

Richard
Thanks Julie. Dianne also said that she's learnt to slow down too - Simone and Brenda, what do you think about that?

Brenda
I find pacing myself, that will look differently for each stroke survivor, as I said I am 15 years down the track, it is trial and error.

Richard
Thanks Brenda!

Mary Caran
I’m not sure why but I find if I get my heart rate up, cardio exercise, this allows the oxygen levels to increase in my blood stream. After a workout I feel less fatigued and my brain feels more clear (less foggy), I get through my day better. 

Simone - StrokeLine
I have found fatigue is very individual just as the location of stroke and specific challenges afterwards. Listening to your body is very important.
As Brenda has mentioned trial and error does come into it. Some find pushing through works, while others find pacing themselves works. 

Simone - StrokeLine
It is important for those who have recently had a stroke that it is common. It takes time to adjust and work out what works for you. 

Julie Bernhardt
Hi Mary, I've heard this before from other survivors. Sometimes the fog clears with exercise.
We know that exercise is the best 'polypill' on the market - it has whole of brain effects which we seen on brain imaging. There's also some suggestions that a bout of exercise before trying a learning task improves your ability to learn.
So it is worth a try, but monitor how much down time you get if you do too much. It may be that you only need a pretty short burst of exercise to get an effect

Mary Caran
Yes trial and error, that’s how we learn our new limits...
It took me 12 months in rehab to learn to get to a jogging level. It takes time, by my 3rd year I am now training at gym 3-4 per week. Small progress, test new limits physically and mentally and adjust accordingly.
Always listen to your body, only you will know when it’s enough for that day. Slow progress, but progress is progress.
Yes I still have off days where I feel light headed and foggy, I’ve learned what to do. 

Michelle
Been battling to link up here!

Nicola Gough
I am 3 years post stroke and suffer from fatigue all the time. The hardest part for me is that no one can see it. It's a very isolating problem. 

Simone - StrokeLine
Nicola, you mention a very common challenge and that is this feeling of isolation and the fatigue often being invisible. Some stroke survivors find it helpful to use simple terminology like brain fog or 'rubber brain'.
We have fact sheets and can also chat to family and friends on StrokeLine about the impact of fatigue.

Karen Kelsey
My question is Can you please explain what causes both physical and mental fatigue following stroke; why some people experience fatigue and others do not; and why some continue to experience fatigue many years after their stroke? :) 

Julie Bernhardt
Hi Karen, I'll try and give you some information about this.

Karen Kelsey
Hi, I am leaving the conversation as I am finding this form of communication both unwieldy and awkward. I would really appreciate a response from Julie Bernhardt to my question if possible. Maybe this could be sent to me on enableme via mail. Thank you. :)

Richard
Thanks for taking part, Karen. Your question on the causes of fatigue is a big one, we talked about it in the podcast but there's no clear answer.
Julie, do you have anything to add on that?

Julie Bernhardt
Hi Richard and Karen, I did provide a response earlier which Karen may have missed that gives a general sense of where some of thinking is in terms of cause. But you are right, we don’t really understand the cause, we have some useful directions to pursue - watch this space.

Michelle
I had a TBI and not a stroke, but I'm always interested in finding out more about the fatigue as it has been debilitating for me. I am now 7 years post and still battle!

Richard
Thank you all for your questions - keep asking and we'll get to everybody.

Michelle
Are there any other tips anyone has?

Diana
Emma Gee swims and does yoga for managing her fatigue and pain.

Michelle
One of the things that my husband recommended was to not pack too much into a day!

Heather D
Hi all - I am only 5 weeks post stroke and am really struggling with the fatigue (and using the keyboard). I am interested in hearing about coping strategies you may have used. O:) 

Michelle
Hello Heather. STAY STRONG!!!

Diana
Michelle you're gorgeous .

Heather D
Thanks Michelle!

Michelle
Thank you Diana!

Paula
I'm like Heather, I had my stroke 8 weeks ago and I too am struggling with the fatigue

Nicola Gough
Hi Heather, you will feel better, it takes time and patience. It is usually such a shock to have a stroke and accepting all the changes. Be kind to yourself, you are a survivor.

Sue Mahony
True Nicola

Heather D
Thanks Nicola. Patience is in very short supply! 

Sue Mahony
I’m 4 years post brain stem stroke & suffer fatigue, if I don’t rest up my voice becomes slurry. I take melatonin which helps me sleep.

Jo Rose
Hi everyone, I am 11 months post stroke and still struggle with fatigue. I find I go into a deep sleep but don't feel any better when I wake? 

Brenda
For me when I am fatigued my speech is my best barometer.

Jo Rose
Hi Sue, my stroke was in the brain stem too and my speech gets very slurry when I'm fatigued.

Sue Mahony
Jo Rose my speech was good for a while but then my dad died & it got worse??

Brenda
My memory is worse when I am fatigued

Simone - StrokeLine
Fatigue can exacerbate other challenges like speech, muscle weakness and thinking abilities. It can be a good indicator you may have overdone it or need to rest. 

Richard
Simone, is it like other aspects of recovery that it often improves in the first 6 months?

Simone - StrokeLine
I have found fatigue is a little different to other aspects of recovery. It varies so greatly.
Some are hit with severe fatigue in hospital while others don't notice it until they return home and back to their busy daily routines. Others may notice it when they return to work. This can leave many feeling frustrated and wondering why they are so tired if they haven't been informed fatigue is common and what might help to manage it.

Julie Bernhardt
Hi Sue, you've hit on the importance of good quality sleep as well. It's hard to work out how to sleep well if you need to rest in the day to manage fatigue.
There are some sleep researchers that we're working with on the fatigue study. We can see from some of our research that early after stroke sleep is really fragmented and this improves over time.
Some good sleep habits are really important I think.

Sue Mahony
I had sleeping tablets first up, but I still didn’t sleep all night.

Richard
Simone, do you have any sleep tips for people?

Sue Mahony
Less stress I sleep better.

Simone - StrokeLine
Regarding sleep - having a regular routine helps, switching off electronic devices (TV, phones, computers) at least an hour in advance, preparing the body for sleep. Avoiding caffeine from the afternoon, not eating too late in the evening.
Stress definitely has the potential to affect our sleep, so taking some quiet time to relax, meditate or focus on the breathing can help. If possible, journaling or noting down any worries or your 'to-do list' can also help get our thoughts out on the page before bed.
Lowering the lights can help prepare the body for sleep too.
If you're having difficulty sleeping you're welcome to call StrokeLine so we can discuss your particular challenges, is it getting up in the night, difficulty falling asleep, etc.?

Julie Bernhardt
Some great advice from Simone, that is exactly the sort of stuff that I had to do in "sleep school" to stop being an insomniac. All very sensible when you think of it.

Richard
Brenda, Sue said earlier that she got worse after her dad died. Do you find life events affect fatigue?

Brenda
Definitely, I think all the emotion and activity that happens when someone close dies is HUGE, I certainly was more fatigued after mum died last November.

Heather D
I'm also not sure how the new medications I am on, including an antidepressant, are adding to the fatigue stress

Richard
Julie, do you have any thoughts on medication as mentioned by Sue and Heather. Are there some things that help and some that make it worse?

Julie Bernhardt
Long term medication use for sleep is never recommended.
Also, just like other people with sleep disorders like insomnia (and I’m a recovered insomniac!) it’s important not to get stressed about not sleeping through the night.
Depression is tough for anyone, whether you have a stroke or not. It's important that you talk to your doctor about your depression medication if you are finding the side effects problematic. One of the side effects of some drugs is insomnia - but there are different medications to try.
We don’t have any medications that work for fatigue at this point in time although some are in testing.

Simon
Hi Julie.
I’m 43 years old and suffered a stroke approx. 8 months ago. I was very lucky and am now largely recovered with just some very slight residual weakness in my left leg. I am now back surfing and swimming every day.
One issue I do have is that I feel my sleep is different. After I first had my stroke my sleep was badly affected plus I experienced very bad fatigue. The fatigue is now basically gone, however I now rarely sleep more than 6 hours per night, despite leading a very active lifestyle.
I was wondering if it is normal for sleep patterns to be altered in the long term from strokes.
With thanks, Simon 

Julie Bernhardt
Hi Simon, I think the sleep experts would tell you that if your 6 hours a night is good quality sleep, that is probably enough.
Sleep is often altered after stroke and again we're just getting to understand it more now. Before we had some of the newer technologies, you needed to go into a sleep lab to understand sleep and that really isn’t practical. Now we have some new methods to access information about sleep, we we'll be able to tell you more in the future.
I think it's great to hear that you are so active and back to the things you love and that your fatigue has resolved! Great stuff

Simon
Thanks for the feedback Julie and that’s very reassuring.
Yes I’m certainly trying to stay as active as possible and have found doing so to be of great benefit. I normally surf most mornings and/or swim. I have found swimming incredibly helpful in my recovery and aim to swim one kilometer each day. I normally swim in ocean pools (normally DY in Sydney) too which I find very invigorating.
I’m always surprised though that I don’t feel more tired at the end of each day.

Jan
My wife Jan suffered a stroke 18 months ago and now has Aphasia. She suffers from fatigue and endures brain activity late at night which distresses because she cannot get to sleep, but it’s as if her brain is doing what it can to repair itself or so we think. Which of course adds to the fatigue syndrome.
Mal

Shelagh
Message for Mal whose wife suffers from Aphasia. Please message me. Thanks.
Shelagh 

Rosemary Leaman
I tend suffer more fatigue when I am with a group of friends and having a conversation. Probably after an hour with them.

Julie Bernhardt
Hi Rosemary, we have done some really interesting work with computer games in rehabilitation with stroke survivors and we found that after only 20 minutes of focused attention on a game, a lot of the stroke survivors felt 'exhausted' - you are probably spending a lot of energy focusing your attention when you are in a large group and that really heighted attention can be very tiring.
I think your insight into how long you can manage is good to help you manage your fatigue.

Tim
I could relate to so much of what was in the podcast, particularly Brenda’s story. Like her, I appear pretty normal on the surface and am pretty unaffected physically. There are many hidden problems though, fatigue being a big one.
Where can I go to talk to someone who understands - GP and various professionals seem to just judge everything on my ability to go back to work.

Richard
Thanks Tim, that's another excellent question. Simone, do you have any thoughts on that too?

Brenda
Tim, Stroke Support Groups are one place where the members just "get it"! You don't have to explain.

Richard
Good advice Brenda!

Tim
Thanks Brenda, yes I need to get out more...

Simone - StrokeLine
Hi Tim, it can feel very isolating as Nicola has also mentioned in the chat. Calling StrokeLine for a chat, engaging with others like this chat and on enableme can be extremely helpful.
You may also consider getting a referral to a psychologist through your GP to debrief about the impact of fatigue. The GP can write up a mental health care plan which entitles you to a number of Medicare subsidised psychology sessions.
Stroke Support Groups are also very helpful for connecting with others who understand. 

Kristi
My daughter had a stoke 2 years ago and she is only 7 years old now. Her fatigue seems to be getting worse as the demands from school and socialising get greater. She is just angry all the time at the end of the day. Does anyone have any advice with this? 

Richard
Brenda, do you have any thoughts on Kristi's question?

Brenda
I was wondering what Julie thought about the "Physical Culture" dancing, would that be of help??

Heather D
Physical culture dancing?

Richard
Hi Brenda, is Physical Culture a specific kind of dance exercise?

Brenda
Physical culture dancing is a question for Julie for the little 7 year old who had a stroke.

Julie Bernhardt
Hi Brenda, dancing is a great form of physical activity and if you love music and dancing go for it.
The only thing to consider is that dancing also has a 'thinking' component to it if you need to follow any complex steps, and that may mean you need to concentrate (focus attention) which may make it more challenging.
I'd give it a go though - it has the same potential as other more traditional exercises in a gym for example.

Simone - StrokeLine
Kristi, it does sound like your daughter may be experiencing more fatigue from the increasing stimuli at school and socially. Does she take breaks at school throughout the day?
Some schools have introduced mindfulness with programs such as the Smiling Mind. They have a wonderful app for children that may be something you could try in the afternoon when she gets home to help her manage her fatigue and anger.
I'm sure you already do this but double checking she isn't hungry or thirsty.
Art and music therapy might also be something to investigate as a way to manage her emotions. It's likely her emotions are due to the frustration of the fatigue.

Kristi
Thanks Simone. We are already doing the mediation and using Smiling Mind and they do this in the classroom too. School also gives her lots of breaks but it just doesn't seem to be helping.
Only alternative I can see is to her reduce school hours which becomes tricky as a single mum working full-time to pay for all her therapies, but I guess that's another topic!
She is not able to keep still or focus for very long so she is constantly on the go and busy. I need to work out how to slow her down before she gets too agitated & angry as once she hits meltdown it can be up to 2 hours of angry & destructive behaviour.

Julie Bernhardt
It must be hard to be so young, not able to understand what she is feeling. Your observations are really important about when your daughter is experiencing anger and fatigue.
I don’t think we have any really young folk on the line here, but you may find it helpful to get some professional advice about the best way to support your daughter and even for your daughter to get some help with her mood. 

Heather D
Kristi, do you have a support network for yourself?

Brenda
Kristi, I should have asked first if your daughter has a physical disability before I suggested exercise.

Kristi
I have my family who try their best but no-one really understands her like I do and they think she is naughty rather than understanding the real issues.
She cannot use her right hand other than for support, however we do gymnastics to try and build her strength. That's really her only physical disability and the fact she has bad balance. She is a great runner.

Simone - StrokeLine
My pleasure Kristi. It sounds like you're doing all of the right things and doing an amazing job. Are you linked in with Strokidz or CHASA?
The other thing worth considering is diet if you haven't already. Nutrition can play a big role in how we feel/emotions and energy levels. If you would like to chat offline please do call us on StrokeLine on 1800 787 653. Thinking of you. 

Kristi
Thanks everyone. We are linked in with some of those things Simone, however I have not heard of CHASA.
We see a nutritionist from time to time but she’s super fussy like most kids. I will call another time for a chat.

Simone - StrokeLine
Kristi - here is the website for CHASA http://chasa.org/
You can also find them on Facebook. It stands for Children's Hemiplegia and Stroke Association.

Shelagh
Hi. Just got on sorry. The podcast was so good thank you. Brenda’s story I feel 100%. I have increased my exercise this year and running 3 x a week and since then my brain fatigue is less and my focus is much better. Think physical exercise for me is the key.

Tim
I'm 8 months post stroke now and have recently started to slowly get back to my old sporting life. I've found its very fine balance between exercise being beneficial and it completely wiping me out for the next few days.
Is trial and error the best way to proceed or try and put a structured routine together? 

Richard
Simone, what do you think of Tim's question about a structured routine vs trial and error?

Shelagh
Hi Tim. I found that if I overworked my brain AND did physical exercise in the same day, it wiped me out too so I try to do one or the other. If that helps.

Mary Caran
Simon and Shelagh you sound very similar to me. Physical activity pretty much diminishes my fatigue. Physical exercise for me is the key too. 

Julie Bernhardt
Hi Shelagh, great to hear it works so well for you.

Shelagh
It’s taken a while to know my limits... Three years plus I am post stroke but being outdoors is what I like and I have the luxury of not having to work so I am very lucky.
I do feel that my exercise and my poetry got me back on track and positively moving forward. Happy to chat to others after this chat room is closed if they message me x

Brenda
I work part time, if I overdo the exercise it knocks me around next day at work, have to juggle & balance.

Tim
Hi Shelagh, will give it a go, thanks.

Shelagh
Keep me posted Tim. I’m no expert like these on here but can only speak from my own stroke recovery. Message me to let me know how you’re doing.

Simone - StrokeLine
Regarding routine versus trial and error, I would try to increase your endurance for exercise gradually.
In some cases this isn't always possible - if you're playing a team sport and there are no subs for example.
Gradually build up even if it feels painstakingly slow. It will avoid having too many what I call 'fatigue hangovers' where you become wiped out for days. Learn to listen to your body. Keeping a log or journal/diary of your activity and fatigue levels can help.
Spreading out your activities across the week also helps. For example if you're working all day then going out for dinner, you may find that too much and decided meals out are for the weekend only. 

Tim
Thanks Simone, good advice.

Simone - StrokeLine
I think you mention a really valid point Shelagh and other survivors also talk about this. That is doing something you love and that brings you joy. So important in your recovery.
Art, music, writing, etc. are all expressive, creative and usually mindful activities that can take us into a state of flow and minimise the effects of fatigue. 

Julie Bernhardt
Tim, remember too that you probably don’t need to do heaps of exercise to get an effect that may be helpful to your fatigue. Maybe as little as 15 minutes of moderate exercise.
I'd try and write things down and take some notes to see what works for you.

Tim
Cheers Julie. I'll Try and moderate myself! Always found that hard. Thanks to everyone - been very interesting and informative. Now time to find a support group.

Richard
Hi everybody, we have about 10 minutes left. Does anyone have any last questions for Julie, Brenda and Simone?

Julie Bernhardt
The conversation today just reinforces why it's so important that we keep trying to understand and find a cure for post-stroke fatigue. Toby Cumming and our team as well as a growing number of researchers are on the case. We hope to have some good news for you in the future. Thanks for all your questions.

Simone - StrokeLine
Absolutely Julie. Fatigue is one of the most common topics that comes up on StrokeLine and in my clinical experience. Thank you to you and your team for your work. A big thanks to you all for joining in the chat. Please don't hesitate to start conversations on enableme, Ask a Health Professional or call StrokeLine on 1800 787 653. We are all in this together!

Mary Caran
Just to add, if survivors are starting to experiment with exercise, remember to work at your own pace, get your trainers to adjust exercise accordingly for you if training in a group environment.
My philosophy is there is always something I can do. 

Brenda
Thanks for the opportunity to chat with you all :)

Sue Mahony
Thanks :) 

Heather D
Thanks everyone. Good luck Kristi!

Richard
Thank you everybody for joining us today. Sorry again for the messy start—this was our very first online chat, so it was always going to be an experiment! We do intend to do more though after each podcast, and we should get it running more smoothly.
A special thank you of course to our guests, Brenda Booth, Julie Bernhardt and Simone Russell.
If you have a question that wasn’t answered, please call StrokeLine on 1800 787 653, or go to Ask a Health Professional on enableme, https://enableme.org.au/Community/Questions
Our podcasts, including our one on fatigue, can be found at https://enableme.org.au/community/podcasts
Also Karen has started a great blog on enableme about practical ways to manage fatigue: http://bit.ly/20ycXNY
Thanks again for joining us, and please come back next time.

Heather D
Thanks Richard

Simone - StrokeLine
Bye everyone. 

Brenda
Thanks Richard, Julie & Simone, all the best everyone.