My mum is 77 and had a massive stroke back in February. After a very tough time in hospital followed by an unsafe discharge from Ipswich Hospital’s stroke unit (still furious with them), she’s miraculously doing OK.
She’s doing SALT and physio at home - I’m paying for private therapists at the moment (as obviously the NHS are under resourced). But she suffers from severe fatigue which caused her to ‘plateau’ in hospital - it’s improved since returning home, but it still knocks her out for 2 or 3 days at a time. I’m juggling appointments for her as she’s often too tired to do her therapy which of course causes problems for therapists who can’t always work around her, but they try their best which I appreciate.
I understand neurofatigue as I’ve had it myself - it’s awful but it’s there for good reason as we know.
However, on a practical level the rehab system isn’t inclusive, and is therefore discriminatory of this aspect of stroke-related disability which is the most ironic thing ever.
I’m keeping a log of her fatigued days in case we can spot a pattern. But I’m also wondering whether it’s diet related - she’s got a PEG and is on continuous overnight feed.
Has anyone had success managing severe fatigue? How have you done it?
Hi there,
there are masterclasses and talks that cover the subject of fatigue, from the gut biome to hormesis on https://www.brain.rehab/ The course is free (you want the free Rehab training portal) and by far the best stroke resource on the net, in my opinion. I have completed the course 100% and still revisit to it. Good luck, Roland
Fatigue seems to be the one consistent symptom of brain injury, for most stroke survivors. How fatigue affects the survivor will, I imagine, depend on the person. Often, a survivor will go about their daily activities and then get hit by a wave of fatigue that can last days. It depends on what the person has been doing prior but, in my experience, there are many ways to reset the brain’s energy bank. It’s about incorporating these into the daily schedule. Once again though, the brain will use up energy if it is overthinking, stressing, anxious, or overstimulated by external stimulus. Mind blanking is a good technique, sensory deprivation, music, repetitive activity like cleaning or sorting, rest but not sleep, meditation, Mindfullness practice, procedural memory activities, &c. These brain resetting activities can be tailored to the individual. Sometimes the brain is just so exhausted, it needs to just rest and reinvigorate itself. If a person gets worried or despondent, that too uses brain energy. There’s no quick fix, just management and a bit of trial and error.
Thanks.
I have ME following a mental breakdown in 2018 (now suspect it was a mini stroke now i know more aboit it) and so I suffer with fatigue so at least i know a bit about how it feels; like you’re made of stone, and you have to give in to it. It can take ages to fully wake up sometimes (anyone had that feeling of fighting through layers of fatigue to become fully conscious?).
My mum is 77 - almost 78 - so that’s a factor. I’m not expecting miracles but I’m keen to break the cycle enough so she can engage in her rehab and slowly become less fatigued.
She has a sea view which is nice meditation in itself.
I’ve had that a lot just lately, normally I manage my fatigue quite well as it’s only ever mild these days. But recently we had a couple a couple of bereavements we are still getting over and that is what I’m putting it down to. And I think the fatigue is starting to lessen now. But I don’t try to fight it, so unless I have appointments and other places to be, I just tend to go with the ebb and flow of it.
Your mum however, is 77 and just gone through a massive life threatening trauma, she’s not getting any younger. She will never be as she was prior to her stroke, and there’s always the danger in doing too much or pushing too much. Just as we all are, your mum is still at risk of another stroke.
Her brain is still recovering, it’s under a lot of pressure maintaining all her currently functionality…the internal as well as external. Whilst at the same time, the brain is healing, repairing, rerouting neurons if/where it can and relearning and trying to re-activate lost functions. That’s not all going to happen in just 6 months, you are looking at years when we say it’s a marathon not a race.
You could ask her gp what her current nutrient levels are like, maybe she is lacking in something, they may suggest some additional nutrients to boost her energy levels. As she’s is currently PEG fed I wouldn’t consider anything without her gp’s approval first.
And it is always best that the fatigue is investigated first to rule out any other cause before settling on it being post stroke fatigue.
In the early days post stroke my fatigue was awful & i found the whole therapy vs rest bit difficult to manage. My physio suggested longer gaps between my physio sessions as I was finding just as I was starting to come out of the fatigue spell I was jumping straight back into it again. It wasn’t ideal but I carried on my exercises between sessions as & when I could & rested up loads too.
You often can’t just keep pushing theough as it catches up later. So resting is paramount. Whether that’s in short bursts or longer periods will depend on each individual. I still find over 2 years on that my fatigue lasts for days although it takes more activity to trigger it.
It’s definitely worth getting some blood tests done & checking with her GP re her nutrients just in case.
Best wishes
Ann
I have also started a thread on Infra red therapy. Sadly, though there are many questions about fatigue on this site, nobody seems to have heard about Mitochondrial Infra Red !
Anyway, here’s an excellent talk about (Near) Infra red wavelengths, and how they affect life, including us !
Thank you for that reminder. We’re waiting for a blood test appointment so that will give us a clearer picture. Hoping to chat to her dietician.
We have been given no information at all by the NHS about her fatigue and what’s going on. Her consultants seemingly couldn’t wait to discharge her and we’ve had no time to source more expert info since she was came back home.
Thanks Ann. Yes, i think we need to space it out. Physio and speech and language seem to be happening every 2 weeks at the moment. May push it back to every 3 weeks to give mum the space she needs.
Hi, I don’t know whether I can say I have actually had success in managing fatigue, but I do rate advice from an OT called Sue Pemberton who co-authored a book on ME/CFS some years ago. She is ex-NHS and then was running a private ME clinic, I don’t know her current situation.
I also found many years ago that it’s not just what you eat that helps build up energy levels but what you are absorbing, I don’t really know how that works with a PEG, though. I have been advised to eat more proteins and fats (not saturated) and obviously fruit and veg, and think that is so the brain can repair better, hopefully.
Sue Pemberton insists that to get better people should have something happening each day that they enjoy, but I don’t know if your Mum is able to do that, as you say it was a massive stroke.
It definitely helped me but i still had lots of fatigue. It’s about finding the balance that’s right for your mum. That could take a while and is very much trial and error.
I don’t think anyone gets much info on fatigue. I know I didn’t. It would have been useful if someone had said the extreme exhaustion is to be expected etc etc.
Hopefully you’ll find the right balance soon xx
Does anyone have useful advice about how to stop overdoing things apart from getting more paid Care? I thought OT would make useful suggestions but she was not a lot of help .
I had bought some small disability aids which did not help me much and she advised me to stop buying these aids without her, but she has never been back since then and I am on the - believe it or not- Waiting Well’ list from the local S Services to get a SW assessment.
Thanks , this link was really interesting! It shows the difference one person can make when they have the knowledge and will to help.
I thought I had posted it on the site but I have not got the hang of using it yet and it always seems to surprise me with the features and new steps needed to long in. I didn’t know I was at a Trust level where I could message!
3 years and still struggling with fatigue! Wish there was a answer,
@Shorn i agree with Simon if you can’t gwt any extra help then you need to do less or take more breaks as you go. Easier said than done sometimes but vital.
Also you should buy / use any aids or appliances thst make your life easier. It’s easy for someone else to say you don’t need them but it’s you having to manage on a daily basis. They might also help your fatigue levels.
@Miac327 just popping by to say hi & welcome to the forum.
Fatigue is a tricky one. I’m almost 3 years on & still suffering too. Hopefully it’ll disappear for both of us soon.
Best wishes
Ann
Thank you for the response.
Hi @Miac327 and welcome 
Fatigue seems to be the bain of many stroke survivors lives. I’m nearly 4 years post stroke, and although I can reasonably manage it on the whole, there are still frequent occasions when it beats me.
Those are usually when there are events and occasions such as birthdays/anniversaries, trips out and so on. Because we can’t stop living a reasonably fulfilling life. But we do pay the price with fatigue for a day or two after.
And those are the times you have to plan ahead so you only have to the basics, the necessities, and priortising for a few days after. Thats about all any of us can do. We’re certainly not going to get back to how we were before our strokes…but we can always get that bit closer:wink:
This is really interesting - not in a very positive way sadly - but to find the silver lining in this, people who manage their fatigue for other reasons can help stroke survivors, and vice versa. We can broaden the community to help each other.
I’ve had chronic fatigue since my teens but it hit me very hard in 2017 and I’ve been recovering ever since. People living with ME/CFS can share knowledge about this area of life with others who find it scary. There’s a huge amounts of info out there because ME is EVERYWHERE and as a result there’s already a history of knowledge that’s built up over decades.
For instance, the ‘spoony’ method is being used in post-stroke youtube videos and I think originated from the American ME community.
So I’d recommend checking out content about managing ME and chronic fatigue for excellent advice.