Hi! I was wondering if anyone has suffered with really bad fatigue? If so what were some of the things that helped?
My partner is in rehab (his injury happened at the end of July) at the moment but is so fatigued almost all the time that it is preventing rehab and even weaning him off of his tracheostomy despite managing his own secretions with a strong cough etc. He is so eager to get better but all he can do is lay all day or sit in his chair for an hour unless he is too fatigued for that.
Any advice would be really appreciated. He is currently taking extra dopamine due to damage to his basal ganglia area. I just need a light at the end of the tunnel in terms of the fatigue.
Thank you x
Written by
Loveandcats
To view profiles and participate in discussions please or .
My husbands TBI was March 2020, i would say until end of August he would manage 60mins staying awake no longer than 90mins. Bed 9pm, despite wonder in night to eat, would get up 9:30am, by 10:15 fatigue will be bad he would fight it by refusing to nap for another 20mins, sleep by 11am, wake 4/5pm manage to stay awake until 6ish, fight it until he had tee, then rest 7:30pm to 8:30pm but usually in bed 9pm. This was on a good day with behaviour, physical symptoms in the mix. Bad days when he would fight the fatigue to the point stroke symptoms occurred that made behaviour worst and took up to 2 weeks to get back into managing fatigue. That was our typical routine/structure.
Since September rests more at lunchtime, and eased with napping some days, every day unpredictable still. I try and juggle work at office for 3hrs max, (yes despite lockdown) and get home to continue working, in that time he does rest until bedtime. However managing this wakefulness, does bring poor behaviour and ADHD characteristics. But told its still too early with managing fatigue but were doing well, 5th month his bloods indicated hormone levels low and to be redone December, but with covid will hold off. Also told March 2021 should see improvement with fatigue, thats what keeping me going with hope at the moment, but really I know may not be the case. As everyone different.
I have no answers but thats a small screenshot of fatigue with us.
Thank you for your reply. I would have never thought fatigue would be such an issue but it is isn’t it. Thank you for letting me know we are not on our own with it. Wish I could give him some of my energy bless him. I also want to thank you for being one of the people that replied to one of my posts a few months back when things were really bad x
Despite this heart ache, sorrow and but clinging onto hope. Its nice to see development with your husband. Its a slow process, but hes a fighter, be matter of science to get that balance to support more developments, it will happen.
Stay strong, hold on tight to the hope, its a long journey, and were only just at the early stage. X
Hi, my rehab nurse suggested a “brain zone” for 10 min every hour at first, this consists of laying down on your back so completely relaxing and covering eyes so blacked out. At first I was wondering if it would help but it really really did. Perhaps try it every 30-40 mins ?? Fatigue was a big thing for me, and once your fatigued all other symptoms seem to be amplified so with it comes frustration and irritation. I have also been doing yoga from the Love your brain website - have found so many helpful things on this website so might be worth a look. I had never done yoga before and was sceptical but again it has proved very helpful in my recovery. All the best.
My TBI was classified as mild-moderate, so others here will be able to give you much more information. Hope you are getting help from the Headway helpline too?
As beachlovingkiwi says, I was advised to take 10-15 minute breaks every hour too, and I also take a half hour break morning and afternoon now - it helps avoid headaches, and lets me function better during the day.
Hope you both get the support you need during his rehab
Hi, thanks for your reply! Yes Headway were amazing with my past worries! I will definitely try the 10 minutes break! He does get awful headaches that prevent rehab too so hopefully that will help even if just a bit! Thank you x
Lying down flat with closed eyes still seems the best way for my battery to recharge I've found.
It might be too early for him to try out yet, but the Headspace app was a lifesaver for me early on for managing headache (there's a fair bit of free content on it to try and see if it's helpful or not). It's been a good way for me of taking a break or 'time out' from early on.
Hi, my rehab nurse suggested a “brain zone” for 10 min every hour at first, this consists of laying down on your back so completely relaxing and covering eyes so blacked out. At first I was wondering if it would help but it really really did. Perhaps try it every 30-40 mins ?? Fatigue was a big thing for me, and once your fatigued all other symptoms seem to be amplified so with it comes frustration and irritation. I have also been doing yoga from the Love your brain website - have found so many helpful things on this website so might be worth a look. I had never done yoga before and was sceptical but again it has proved very helpful in my recovery. All the best.
Hi! Thank you for suggesting the love your brain website! I’ll definitely take a look. He’s not very mobile to be able to do yoga, but I’m guessing it also involves breathing exercises which could be good for him? And thanks for the 10 minutes suggestion, I get to visit for 45 minutes 3 times a week but sometimes stay up to 2 hours on the sly, so I will try that thank you
Yes there is some meditation on the love your brain website too so that could be helpful. Some of the yoga is sitting in a chair too I havnt done this one but could be worth a look?? All the best 😀😀
Fatigue is undoubtedly the main issue after brain injury and it can persist for months or years. As others have said, management takes patience and a slowing of pace.
My son used to massage my hands when I was agitated and, though it's nigh on 9 years ago, I clearly remember how soothing and relaxing it felt. Perhaps something so simple could provide your man with 10 mins of deep relaxation and essential respite ?
Yes. It is very common as im sure you know. I was sleeping my life away. I would say it might be a bit early to do anything now as rest is important for healing. The advice i was given about 8 months after my injury was to stop sleeping.it sounded weird to me but i fought with myself and stopped napping or going to bed at 6pm!. It worked. You still have to avoid doing too much, ie pace yourself but it transformed my life and now i go to bed about midnight and wake about 8 h30 or 9. Lockdown lie ins!. I feel fine but dont cram things into my days like i used to. Good luck
Hi, it really is early days you know. My husband had his tbi in January last year, so it's nearly 2 years now. He still suffers from fatigue, but nowhere near as much as at the beginning. I've tried so many things, and I have to believe at least some of them have helped! Read Ghost in my Brain by Clarke Elliott, get the puzzles he talks about. Visit an optometrist to see about the special glasses he gets. Try a neuro therapist, the exercises are so good. Both the latter can be found with John and Janet Glover, near Stockport if you're in the northwest, but I'm sure there are others. Finally, diet and vitamins read How to feed a brain by Calvin Balaster. Patience an perseverance! Good luck. I tried all these gradually over 18 months, by the way, didn't do much the first 6, just let him heal.
In the early stages, fatigue isn't necessarily the worst thing. What the body needs is rest to repair and for your partner to sleep. Fatigue helps you avoid too much mental activity and stress. Both of these slow down the repair process.
Whilst the damage is never repaired, the brain creates new neural pathways to avoid the damage. New neural pathways are created when you sleep, so the more quality sleep there is, the better.
However, what you don't want to do is follow the advice my GP gave me - sit in a chair and do nothing! Head injury patients need stimulation to help regain their skills but also some physical exercise to maintain muscle tone and improve sleep quality.
One sleep doctor told me to get exercise for 90 minutes in the afternoon as that is the most beneficial time.
Yes I had very bad fatigue after my BI and definitely in the first couple of years. It was worse straight after, but I couldn’t stop sleeping and it will definitely help to heal his brain.
I still affected but I’m better at managing it now. I get really sleepy periods of time and it’s fatigue not like you’ve ever experienced before.
Hiya. His brain is taking the rest that it needs to heal. Everyone's recovery & symptoms are different. My accident was 22 years ago and I still start to wilt & get irritable and confused 4 or 5 hours after waking so I have to shut down for 1 - 2 hours to charge my brain batteries, either at home or if we're out I find somewhere quiet (even in the car in the car park) and I stick ear plugs in and zzzzz. Fingers crossed that he makes a great recovery.
I think only those who have been through a trauma and those very close to them (plus neuro professionals) can begin to understand the fatigue thing.
I will say it is very much in my case related to doing office and similar work, whereas it is much less noticeable or non existent when doing other tasks both technical at work or at leisure such as cycling.
Recognising the need to lie down and sometimes sleep for either 10-15-30-60 minutes changes everything and feel totally rejuvenated.
However, I can keep going without feeling fatigued when cycling.
Bizzare, even if I have a long history in endurance cycling so all those hours put in over the years seem to have paid off.
Cycling is not just about fitness, its also about the right mental attitude and determination.
Step by step, mile by mile. Small achievements add up to an ultimate goal. I think that is a good way to look at both recovery and life in general.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Dad has hypoxic brain injury after cardiac arrest 
What has been the biggest change in your life after brain injury?
Does a return to part-time education help after brain injury.
Has anyone out there gained weight actually *because* of their brain injury?
hey guys is what im feeling NORMAL even though it wasnt me who has suffered a brain injury
