How long do you expect to suffer with fatigue after a brain injury. Its been over a year and I'm still suffering with server fatigue. Physically I'm ok but mentally now that's a different thing. My problem is I look ok from the outside but no one sees how I'm feeling inside.
Regards,
Dave
Hi Dave.The short answer to your question is no one knows. Every brain injury is different.
Im 9 years on and i still suffer from fatigue, i just manage it better now.
Brain injury is unforgiving to us all. I have been told since the day I became aware of my surroundings how well i look!
Just keep on persevering, rest when your body tells you to, and try to bear those comments well.
J x
As others have said it doesn’t really go away you get better at management of it and learn what you can and can’t cope with plus takes time to simply recover from a brain Injury which is a big thing.
It's been five and a half years for me and my physical and cognitive fatigue is as bad as ever. The closest I have come to a direct answer was a year ago when a neurological rehabilitation consultant told me that it's unlikely to change in any major way.
My tips - you might already know these:
The Headway helpline advised me very soon after my ABI. They said to take 15 min rests several times a day. Try to be somewhere quiet, cover your eyes and let things drift. Do use a timer as you mustn't go over 20 mins or you will go into a sleep cycle. It's best if you do this regularly, don't wait until you feel tired.
I use a blue light therapy lamp to help first thing in the morning. If I use it at lunchtime I can cut out my lunchtime rest. It regulates your circadian rhythms and can help fatigue and mood.
I still occasionally feel like I can't stand being like this. The fatigue is the thing that impacts my life the most out of all my ABI problems. If only there was a really effective treatment or therapy available.
I do wish you well. 🌼
Hi Dave.( 'Expect' ... best not to expect... anything... when you are in the brain injury club. I used to do the expect thing, too - now when I see it it strikes me as the best stand up comedy one worder for bi people.)
For me the perception of the fatigue has changed, maybe through some healing, better management through experience, better awareness.
I would advise getting interested in coping strategies, keeping a diary of activities, the weather and other environmental inputs, , and making notes on fatigue to see how they fit together.
Sleep is your friend, it is when healing happens, so don't try to short change it.
Think of your brain like a factory. Twenty people used to work there. Now 10 do. If you apply too much pressure to the 10, because you are a demanding boss, 5 collapse. Now you are trying to function with the remaining 5 - who can now barely function.. To keep the 10 going, you need to demand less and give them time to figure out what 10 can do. They are very willing employees doing their best, you can trust them. Just some of the really skilled workers are gone and the remaining have to figure a lot out.
Your brain is working super hard to do things you used to take for granted.
It is frustrating. Some of those old employees may not come back. Some remaining employees may learn their jobs - but they left no manual so they may do it differently. They also may not do 2 jobs at once so you can get something happening one day, but not another.
I hope this helps you see things in a different way and helps you be patient with yourself. You are still in early days.
Take care.
Thank you for this brilliant description- I know it wasn't for my benefit as such... but as the partner and caregiver of a lovely guy who suffered hypoxic brain injury 6 years ago I finally get why he can read words like 'archeologist' one day but not 'bed' the next. And so many other challenges... You have described it so well, thank you!
Thank you Gela64, I am really happy it helps.I have been wanting to keep a log to try to figure out what activities are les compatible with each other... I have the care of an elderly parent so don't have a lot of ability to pick and choose tasks, but could see it would be good to be away of how that might work. You may notice things like that faster than he does. My Mom usually knows the factory is about to take a break before I clue in.
That's the best description of fatigue I've heard Leaf!
Tha is, Painting-girl - my medical people tell me I am good at describing such things and some think I should consider writing a little booklet... I am considering it for later when my plate is less full.
Yes do try 😊👍
I’ve just read this to my husband who sustained a severe TBI 18 months ago. We will have to read it a few times but it genuinely is the best analogy I have seen. Thank you. I have screen shot it so that we can keep reading it on bad days, I think it will be a huge help. 🙏
Yeah sleep helps but it affects motivation. to keep motivation high I use supplements because feeling tired later in the day is a common 3xperience and affects my circadian rhythm maybe I need that blue light thingy,
I read out Leaf's post to my husband, and he agreed it was a very good description too. He's 2 and a half years in. I asked him which troubled him the most, fatigue or the dizziness he always suffers, and he said the fatigue IS the dizziness. I don't think everyone who suffers from fatigue is dizzy are they? All so horrible 😩
Fatigue & dizzy work together for me. I try hard to manage fatigue 5 & half years since my BI but it's not always doable with family demands. It's like I'm drunk & I just have to stop whatever at task. This fatigue crap is the worst thing ever but hey I'm still here
I find pretty much all other symptoms are worse with fatigue. I lose my balance more, tremor more,, can't find things, start having trouble with physical speech and word finding, and being able to process - so things like if I get cold I do not know, and do not know it means 'put on a sweater.' If someone tells me I am cold I still won't put a sweater on. Something like 'go to the cupbaord and get your blue seater and put it on' might work, or I might forget on the way. And am not capable of conversation.
I used to get so dizzy if I bent over even slightly I would throw up. I also spent some time on the floor with my eyes closed because if I moved I'd throw up. After some time it got less bad, maybe 6 or 7 years out. Now I am about 12 out and I do feel dizzy time to time but generally if I stop what I am doing it subsides. I also am aware of what causes it, so say won't go into a store with black and white checked tiling , especially on the floor.
Some people find the vestibular physio therapy helpful. The exercises are not easy and will trigger and cause fatigue, so try to simplify life and other expectations while you go through it. (I tried but was advised to stop - just too much. I might dig out some of the excersizes to try again and see, I might find them more manageable now.)
I am really glad you brought this up as it helps me see how much progress I have made.
I find everything gets worse if my fatigue is bad, even my insomnia.
Hi Dave, I'm told this is a new way of life by neurologist & fatigue is part of the new me. As time goes by I am still learning to manage it & what my triggers are & after busy day, I need to have rest day, which I don't mind as long as everyone leaves me alone lol 😅
I'm three years in since my TBI Bevdave. My neuropsychiatrist said that fatigue is the last symptom to go. Am currently flat on the sofa again because I've spent a couple of lovely days out with the family. But I have had a little walk out today (though not done the washing up yet) so am okish.
You're right, it's invisible - though other people do spot the start of fatigue before I do in myself - so I've taken to checking the bathroom mirror to see how tired I am really.
Can't beat Leaf's factory description!
Things to try -
Rest for a couple of days before a busy day.
See how a longer break in the morning and afternoon works for you if the 10- 15 minute break every hour isn't working - but set alarms on your phone or Alexa to remind you. Try and get the afternoon one in before four pm. I find the Headspace app good for timed meditation breaks when I don't actually go completely to sleep .
Keep a fatigue diary to see what activities make your fatigue worse, what ones make it better, and which are pretty neutral. Try and shift towards the neutral and better tasks in your day, and away from the others.
Build up gradually. Whatever you do on your worst days, is your baseline activity level. Only do this much every day, even when you feel ok. Gradually add in an extra half hour of activity each week. If you overdo it, go back to your previous level. The idea is to not let your fatigue knock you out.
Don't plan to do a 'big' task in one go, like you would have done a year ago - try and break it down in advance into smaller tasks - and try doing just one task a day.
A neuropsychologist can coach you to manage your fatigue .
We're all here anyway, we get it - when you need to talk 😊
Remember every brain injury is different from all the others.
Aah, if only there was a simple answer to this question. Ever since my ABI 13 years I have suffered from cognitive fatigue that in turn leaves me feeling physically tired.
As others have written, it’s a case of managing your day around rest periods.
It’s been 11 years for me now and I still suffer terribly with fatigue. I’m limited in how far I can walk or what I can do daily so have to ‘choose’ each day and rest in between. Everyone is different but personally I think it’s something you have to learn to live with and work around unfortunately.
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