Fatigue improvement

[Onedge93]

Hi

I’d be interested to hear how much, if at all, people feel their fatigue has improved since their injury, if you’d like to share.

E.g. “my brain injury was x days/weeks/months/years ago. Initially my fatigue was mild/moderate/severe and I was unable to do [activities]. My fatigue hasn’t improved/has completely resolved/has improved by around 10/30/50/70/90%. My biggest fatigue triggers are [activities] but I can easily do [other activities] without fatigue.”

If you’d like to share more details about your initial injury (e.g. severity) then please feel free. I am interested to know people’s experiences as my partner had a TBI last year and I feel we were given next to no support or advice on this, or any other, issue.

[Wazza84]

My haemorrhage was 6 years ago and I would sleep through for a few hours (almost uncontrollable) during the day for the first 2 years or so.. now I pretty much manage my fatigue by pre-planning everything but I do tend to rest my mind, body & soul daily 😁 by resting in a quiet room... fatigue after a brain injury is different than everyday fatigue so there is no comparison 🙇🏻‍♂️

[SG-1]

After 6 years I still feel just as tired.( The meds don't help. ) I'd say though, that I've become accustomed to the dozy feeling ( to a point ) and tend to just get on with it.

[Wazza84 in reply to SG-1]

Hello SG-1

Which meds do you take?

I was put on modafinil in rehabilitation after a brain bleed. It brought me on a lot (rehab wise) and I still take it to this day to help fight fatigue.. it’s a non addictive smart drug but helped me soo much 😁

[SG-1 in reply to Wazza84]

Amitriptyline 20 - 30 mg per day. I hate it but it does seem to take the edge off and allows me to lie down.

[DTBI]

I had my TBI 4 yrs ago, my fatigue is dictated by sleep. If I get at least 8 hrs I can do whatever physical exercise I want to do. I do find my fatigue during the day is quite understandably dictated by brain work/exercise. Good luck with it.

[magdolna]

Two years on, the fatigue is still present and varies in degrees depending on how active I was during day. Socialising is great for making one very tired. Driving during the day too. Just have to live with it!

[Hidden]

Hi,

My brain injury was 5 years ago.

Initially my fatigue was severe and has improved by around 25%.

It still rules my life.

My fatigue triggers can be too much physical or mental activity, or pain, or conflicting noises, or any stress, or just being around people.

Navigating situations where I have to pretend to be normal (work/people who knew me before) is probably the most fatigue inducing activity!

I can generally do most activities for a few hours in the morning without fatigue if I don't need to plan to function in the afternoon. Clearly an issue at work.

What have you found?

[Matt2584]

Hi,

I have been through a lot which all started in 1996 when diagnosed with a brain tumour. I was 11 at the time, almost 12.

I had a further op in 97 and was diagnosed with another tumour/cyst in 98 which I had radiotherapy on.

I had a further op in 99 and in 2000.

I was ok for a while but had further ops in 2005/06 and 2 in 2010.

So during the 90s I was in and out of school and hospital.

I managed to go to college in 2000 but this did not last long. Although I had little to do while there, work was being piled onto me and this was no good for my fatigue. I would come home shattered.

I did get tired out quite easily. DID. But not so easily now.

I have more faith in nature now and a few years ago was when I looked into frankincense essential oil and how it benefits the brain. It sends more oxygen to the brain which is what the brain needs in order to heal.

It is wise to research on essential oils and not to go out and buy any old oil. Essential oils have qualities.

Anyhow, I got some frankincense oil and at first was inhaling it directly from the bottle. After a few weeks I did notice that this had helped with my fatigue.

I am an artist, not a well known one but you may have noticed some of the art I have posted. Before the frankincense after doing some drawing I used to get very tired and my held would feel thick as if someone had opened up my skull and poured concrete into it :). My right hand would also stiffen up and feel very sore.

After the frankincense, tiredness and stiff hand weren’t much of a problem to me :).

[Plenty]

Fatigue plays a massive part in rehabilitation. I’m still learning about fatigue and anxiety now, after having a TBI over one year ago.

I have to sleep/rest in a dark room every afternoon. If I don’t it really effects my rehabilitation gains, in fact it feels like I’m going backwards.

I believe that what effects my fatigue and has larger energy demands - ranging from low to high are :-

Physical.

Cognitive.

Social activity.

Emotional.

Which probably make me realise why I’ve been subconsciously avoiding the higher ones!?

But it’s good to share ideas here and help each other.

I’m now learning not to put to much pressure on my self and pace myself on activities.

And rest will aid rehabilitation.

But we are all different.

Hope that helps.

As one doctor told me “positivity always wins”

[StaceM8]

Try having a power nap - 20 minutes in the afternoon makes the world of difference !!!

[iforget]

My TBI was 12 years ago (hardly seems possible) and initially I slept the clock round. I think by a few months in, it was 80% mental fatigue that remained. Now as long as I pace myself, the fatigue levels are a way more manageable 30% ish

I found it helped to pinpoint when I was at my most alert and to use that time to do anything requiring cognitive ability...and to do that in quiet surroundings and for short periods really helped. Going for a walk afterwards, when I could walk quietly and use physical energy (rather than cognitive energy) helped as did switching that out doing things with my hands that did require a lot of thinking about...artwork, gardening (light weeding, pruning type thing)...getting in as much quiet time as possible still helps and usually any day that has an appointment or specific task in also has some quiet time scheduled in. I never fight a nap if one comes knocking.

Yesterday I had a hospital appointment in the morning and an opticians appointment in the afternoon. Poor planning on my part. The morning was fine but the afternoon appointment was awful and I almost lost it in there... came home and was totally wiped. Am still paying for it now. ..but taking care and should be back in track by tomorrow or the day after.