Curious about how fatigue comes on

I think the most frustrating part of recovering from my craniotomy to remove a cyst which was back in January, is the lack of control or warning I get with regard to fatigue.

On days when I feel rested I get tempted to go for long walks in the countryside as I get bored being cooped up in the house, I take my time and stop for rests, when I was off work I often walked 6 - 8 miles and it was 50/50 whether I was wiped out later the same day or next day.

I find that now I am back at work I am sometimes to tired to leave the house until its time for work again.

The bit I am wondering about is how suddenly the tiredness comes on, with me I find when I am well rested I feel pretty good and more like my pre-operation self. I can go on some longish walks on Dartmoor and a few times I have tried on my MTB as well.

When I am doing the things I enjoy I feel great, the endorphin's are flowing and my body does not physically hurt from the exertion yet time and again within an hour of getting home my head feels really pressurised, my eyes often go very red and I have to either sit or sleep it off for a few hours or sometimes a few days.

Its the same with work as well, I am a production engineer fixing machines in a high speed manufacturing factory and have to work 12 hour night shifts in a very busy environment.

Since June I have been on phased return to work plan, I have tried 6 hour shifts up to the full 12 hours shifts but can not sustain anything more than 8 hours without burning out and needing extra days off to recover.

Conversely I can go to work feeling really tired, walk straight into a mass of problems and after an hour of rushing round my headaches gone and I feel more alive than before.

What i wonder is are their other people who feel like this and how come my body lets me do the things I want and only gets me with the fatigue after I have finished what I am doing.

Quite often I get no warning I have overdone it, I find it weird I keep going from functioning to non functioning so quickly. Its like if my mind is stimulated it can over ride some other part of the brain but only for so long and then bam the other part which I don't understand whacks me down and I am not just physically drained I can feel to tired to even read a book or take it in if I do.

Anyone else relate to this?

28 Replies

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  • The thing is most/all of us have brain Injury/damage thus there is less brain doing more work.

    And depending where it is etc leads to inconsistent abilities, my balance is damaged, I rely massively on my sight to cope. I have to be careful on buses/esculators and so on, but I not only can MTB but to a fair level, ice skate safety though fairly lumpy.

    The other thing is it's very easy to miss ignore the signs and overdo it, i.e. Boom and bust.

  • I call it spoon management, no rhyme or reason to many of the rules of the game and even less to how you win it. I have some known parameters, virus' being one. Don't even attempt non essential tasks when I'm a bit under the weather.

    Beyond that it's pot luck, and very frustrating. Maintaining general fitness helps, being disciplines about mealtimes too. A well managed blood sugar level I find critical now. Look for subtleties in the patterns, you may find some.

    Following a 95% recovery from my cva, fatigue is the most debilitating issue I face. Given the damage caused, particularly to my sight, I am grateful for that, but that doesn't make it any less of a problem.

    Your less than 12 months on though, there is every chance you will see significant improvement. There is some good information out there on managing fatigue, including headways own publications.

    Best of luck with it.

  • Thanks for your thoughts, I think generally I was uninformed about the operation and possible after effects. I can still remember telling my HR manager that I would need about 3 weeks off work and not understanding why he shook his head and said not to rush back.

    It was 5 months before I tried my first comeback on 6 hour shifts and while off I had become a bit more savvy on what I had been through by reading what I could find on the internet.

    Not sure if being given the facts pre surgery would of helped me or not, if on diagnosis of my condition my GP or surgeon had said 'expect to be off work for a long time and lose thousands of £ in income, and you can kiss driving your car goodbye for at least the next year I would have taken a negative view of the whole thing.

    And if he said you will be plagued with fatigue that you can't control for longer than that I would of been mortified as I loved going x country on my mountain bike all year round.

    As it was I just thought each week I get a bit better and soon be back to normal for a long time.

    I still think now that I will get better and know if I didn't have to work I would feel a lot better than I do now but it's not easy when you have a family and mortgage and you are the only breadwinner to stay at home on sick pay.

    On a positive note I now rarely have a drink and have given up my cigar smoking which I enjoyed and am eating more healthily to boost my brain recovery I hope.

  • welcome to the club I have had this for over 10 years now the only thing that reduces the tiredness for me is sunshine lots of it,

    if I go to sleep in the day at the wrong time it causes me problems at night it takes me ages to get to sleep

    I think a lot of us are the same

    take care

    john

  • Sounds like me, I woke at 3.30 am today and have given up trying to get back to sleep, keep thinking about giving up the night shift and going on day shift as it now seems to mess with my sleep much more since the operation, but I am already taking a big hit working part time hours without losing a sizeable night shift allowance as well.

    Going to go and buy a lottery ticket today

  • even without brain damage shift work plays havoc with your brain , if you can get into a more stable routine

  • Mazvol

    I completely relate to what you've posted. I'm 2 1/2 years on from my accident and still struggle with fatigue. I thought a 2 week sick note would sort it, but all tolledvhad 4 1/2 months off and a long phased return. I now work 4 days. I have recently gone into another post at the same place, which after I applied for after a 2 week holiday, as I felt good. I am now completely wiped out by trying to learn something different. I also know I could feel so much better if I didn't work and could then have the energy to do more exercise, but as you say it's not that simple.

    I suppose it's all about pacing, but I've not managed to crack it yet, I think because sometimes you seem to be able to get away with it and other times you are just floored.

    Take care

    Sue

  • Hi, i like the sometimes get away with it bit and other times floored because that's me to a T.

    It is not easy answering questions about my health at work, I am finding myself being more careful about what I say when my manager asks me what I did on my days off or even when he says how you feeling tonight as I can change from feeling fine to very tired during working hours and think it must be confusing for people who have had never had a problem to understand.

    I get asked regularly if I feel ready to increase my hours and when I say sorry not ready yet I wonder what they think, especially when I have posted some pics of me having a lovely day out on the moors or walking the coast paths on Facebook. Probably because I don't post 'that my head was banging when I got home and I had to go for a lie down they assume I am well.

    Finding a way to be truthful with employers without painting a black picture seems like mission impossible at times as they want you working at full speed as soon as you appear to be better.

  • It is difficult at work, when people ask the polite 'are you ok?' you don't always want to launch into, well actually I feel pretty awful..... I have had a few different line managers since returning to work. I first went back after 2 months on phased return and was expected to increase my hours week on week and though I could or should be able to. I ended up working for 2 months, then was off for another 2 1/2 months. I took it much more slowly second time around and after 6 months of trying to get back full time, was told I either needed to be back full time or reduce my hours. I managed a week full time and then went down to 4 days. I still find 4 full days tough, I got signed down to 3 by the doctor for a while at the back end of last year.

    I had different experiences with line managers, the best being where we got together every few weeks to check in how I was doing, rather than talk about it all the time and regular breaks in meetings. My last line manager didn't get it at all from telling me it was probably down to my age (49 woman of a certain age and all that) to failing me on my objectives, even though I do a full time job in 4 days and when I finally rang in sick, when I really wasn't well got asked if I was taking it as leave. Anyway, tough as the new job is, I've moved on from her and we have an employee passport we can use to flag health issues etc with line management, so even though I thought I'd never need to go down that route, I will always use it in the future.

    Not all doom and gloom though, Wednesday is my day off and I've had a lovely riding lesson and the sun is still shining. I'm off work next week too.

    Take care

    Sue :-)

  • "Oooh, are you OK, can I get you anything?"- it's always REALLY hard not to ask if they'll pop down to Tesco, and bring you a new brain... maybe that's me?

  • Hi Sue, your return to work sure sounds very similar to my experience so far, I try my best in most things and want to get back to my previous working hours as much as my company wants me to not least because I work with a good bunch of people and enjoy it on the whole.

    At the moment though its just not working out, I have reduced my hours to 8 per shift having tried 10 hour and 12 hour shifts. But I do not work a normal week I do them for 3 nights then I have 3 nights off.

    Since my last relapse in September when my GP said no work for a month I have worked 4 of these blocks and I am feeling progressively worse on my days off.

    This is what has happened to me before, I start of just needing the first day off as a rest day then its 2 days then to the point I need all of my days off to recover and just spend my time at home resting which I hate doing. The last time I persevered through the aches and pains and kept increasing my hours I needed 4 days off to recover.

    But I still kept going until I needed 9 days off to recover so I am convinced that the more I push to keep going the more my sub conscious brain pushes back and makes me stop so it can do whatever it thinks is more important.

    While I am on a phased return to work my company have been flexible and allowed me to alter my hours as I see fit but as I do not do the full 12 hour shift it causes another problem.

    Because my driving license is revoked i need to rely on lifts to work as it is a good 10 miles away in a fairly out of the way location. When I leave work early I either have to get the wife to pick me up in the early hours - which is not good as her driving scares me or I get a taxi which is £12 - £15 each time, which with a reduced income is not good either as it adds up quickly over a month.

    Really hard deciding what to do for the best as I can feel myself needing more recovery time again and needing all my block off to recover.

    I have not given up on the idea that I will get back to normal yet but I have revised the timescale and decided its not as simple as taking each week as it comes and not looking to far ahead because I have family relying on me and am currently letting my practical nature plan for worst case scenarios. If things improve then no problem.

    I think that provided I try my best then that's all I can do as none of us know whats round the corner.

    Like you say at the end its not all doom and gloom - i have had many great days out this year while signed off sick and think I made the most of what was in some ways a rare break from the daily grind in spite of the problems.

    Hope to have many more to, whether off on sick leave or not

  • Not being able to drive doesn't help either. I work 40 miles from home, though do now work dome days from home. I got the train back one day and with the change of trains and walk home it took nearly 3 hours, excellent for fatigue. Keep posting on here, I should more.

    Sue

  • Hi there, yes fatigue is a big problem- 17 years later it still is and I'm afraid it will most probably not get better - however you will learn how to best handle it, how to best pace yourself and your own priorities. All the best xxxx

  • Ah, "Do anything nice at the weekend?" and the Facebook-stalking colleagues, been there, done that, got the t-shirt...

    It's difficult for people to accept the fluctuating nature of the after-effects of a brain injury. My ex was a fine one for "Well, you managed it last week, what's wrong with you now?" I don't get as many of the out-of-the-blue 'factory reset' fatigue episodes now, either that, or I'm getting more responsive to the warning-signals.

    It's a learning curve, I double-tested, and analysed the triggers for my episodes of fatigue, not quite 'keeping a diary', but assessing when the big ones were hitting, and whether there were any common factors. (Spoiler, sometimes there isn't, sometimes my brain still takes it upon itself to throw down like a toddler having a tantrum in a supermarket, but I can generally notice the creepy-insidious warning signs, and extract myself from any situation where the fog would place myself or others at risk of harm.)

  • On the whole I think most of my workmates have made a good effort to support me and encourage me to do things at my pace and not rush back to full time hours as have the HR department. The pressure comes from Production managers who are numbers guys and want max out put on their shift.

    Luckily for me last year I got the highest rated appraisal on my shift for my work so this year my manager said it would not be right to drop me more than 1 level and his boss agreed so I was relieved as pay rises are linked to performance in my line of work. Not sure what will happen next year though if I am not firing on all cylinders.

    As I felt stronger and better before I returned to work I think my problem is I am doing to much to soon and were it not for the financial pressures I would be better doing less and living life at my pace instead of being a slave to the machine.

    At some point I guess one has to make tough decisions like whether to sell the house you have made home for nearly 20 years and move to an area which is less expensive and buy a smaller house just so you can reduce your out goings and live on less money.

  • The work-life balance is a nonsense when you're carrying a brain injury, in my personal experience. I HAD TO go back to work, because my job was so fragmented, I knew it would fall apart entirely if it was farmed-out in chunks, to colleagues who didn't have the holistic overview I do.

    I completely burned myself out, and that's taking some coming to terms with, I was back at work half-days six weeks after emergency brain surgery, and after my second, elective surgery, in March of this year, I didn't have any time off. (Because I'm a tricky cow, and had scheduled it during the school Easter break.)

    Your health needs to come first, or you could end up where I am now, in a revolving-door of seemingly unrelated medical appointments, and signed off sick, knowing perfectly well that my 'jobs' won't be done properly while I'm off. There's no 'insurance payout', because our issues are surgical, rather than accident-related, but it might be worth checking the small-print on any existing insurances you have? A brain injury, in loose terms, is a disability, and, with the best will in the world, it's not going to 'go away', we just learn to work around it.

    I think that the biggest issue is still the 'nobody knows' factor... we might 'get better' in time, we might not, and there doesn't seem to be much information flowing between medical teams and employers, in terms of what to expect...?

  • I was hoping to hear the voice of experience and voila - what you say is spot on. I have burned myself out to often and the recovery times increase when I do , meaning I go from phased return to signed off with no say in the matter. Going to seriously look at my options if today's lottery ticket don't win big.

    My neurosurgeon is no good on aftercare period and when I brought up fatigue last month he said we don't have all the answers but I can tell you it won't be cured by more surgery.

    Really helpful

  • I can only quote from my own experience, and I was, in my own words, a Pound-shop Wonderwoman at work, and then a complete ogre at home, because I was throwing every scrap of energy into my job, trying to 'prove' myself... Felt right at the time, because work, for me, was where my 'worth' was, not being an unpaid housemaid, doing all the housework, with a brain injury, while himself sprawled out on the sofa, and left crisp-bags and used socks all over the house. (Hang on, this is Headway, not Relate, isn't it?) (Spoiler, I carried on doing all the housework anyway, because I couldn't deal with other people's stink and clutter, there I go again, I'm not Cinderella, and there's no Fairy Godmother to bop me on the head, and send me to the ball...)

    Every individual will have their own unique balance, and tipping points, I was snarky on here at first, when kind forum members advised me to slow down, and I apologise unreservedly for that.

    In hindsight, I should have taken smaller steps, and reflected on SLOWLY increasing my tolerance/capacity, instead of 9-hour working days, walking an average of 10km every day, and not saying "Stop!" when my workload stressed me out. Here we are, though, approaching the fabled 2-year mark, and in something of a relapse. I'll come through it, but I'll take on board the lessons learned this time, none of the previous running-before-I-can-walk malarkey. (Seriously, RUNNING to kids with potentially life-threatening medical conditions, and being 'the one' to decide whether it was an ambulance/defibrillator/emergency medication situation... with a brain injury, and a terrifyingly complicated desk-job as well?)

    We can learn from each other's mistakes, but we'll still make mistakes of our own along the way. (Now giggling at the fact that one of my other online personas is a 'Hare'- I did that BEFORE the brain injury, and I've only just cottoned on that I need to be a bit more 'Tortoise.')

  • Yes I had a similar experience and it took over a decade for them to identify the mechanism! I finally changed GP practice as the old one were not interested and, most importantly, were not listening. One of the things I had noted was that if I exercised I did not get 'out of breath' - I just had to stop! When I was at work and interacting with people - talking - I was fine but when I was on the long drive home or working from home alone I would get these waves of fatigue. NOT narcolepsy just an overwhelming urge to sleep.

    My new GP did listen and referred me to a Respiratory Consultant. He sent me home with a little kit that monitored me overnight from a finger thingy - recording heart rate and blood oxygen levels. Compared to MRI scans etc the technology is very cheap for the NHS though not glamourous!

    It revealed that I was not breathing enough, my blood oxygen levels were falling and my heart rate too. This explained the 'TIA', odd moments and the couple of Grand Mal seizures I had had. My respiratory consultant had started out as a Neurologist and switched because he had become so frustrated with how little they could actually do...

    Anyway he put me on oxygen and I now have an oxygenator machine at home and a nasal catheter. I have it all night and during the day when I am alone and not talking to anyone. It can be switched to my bed or the sofa in our living room and I have a backpack with small cylinders for going out (to hospital appointments). They even reimburse the electricity it uses. This has eliminated the urgent fatigue!

    Btw it is called Central Alveolar Hypoventilation and is almost certainly linked to damage to the medulla area of the brain at the back where I hit my head.

    It is probably worth looking into as it is so easy and cheap to test.

  • Good idea about the oxygen, I heard some good things about extra oxygen being good for the brain as it uses 30% of the oxygen taken into our bodies.

    Think I will look into oxygen related treatments, I have started using the iron rich vitamin drinks I saw in a health shop as they are meant to improve energy as the iron helps oxygen circulate better in the blood

    I think.

  • It would be a waste of time going on oxygen if you are breathing normally! Expensive and limiting in terms of mobility. It is so easy to get tested. The main thing that I experienced was that when I ought to have got 'out of breath' from exercise I had no such urge - I did not breath heavily but just wanted to sleep! this is what I described to my GPs. All the best.

  • May be, I had a Doppler scan a couple of weeks ago to look at the blood supply in my neck going to my head and that was fine. Heard that sleep apnea can symptoms can have a similar affect

  • Yeah it is a complex area - it might be many things depending on what and where the damage is - which is why a Respiratory consultant needs to look at it (neurologists don't trespass on other specialisms). I just mentioned my diagnosis as an example linked to the area of my brain that took the impact. BW

  • Hello Mazvol

    I hope that you feel better as time goes on.

    I can relate to having fatigue, as my body has been healing after surviving a near fatal road accident.

    In terms of work, my neuropsychologist suggested a phased return to work. I spent some time before returning to work learning to read short articles, as my attention span was so short and my cognitive functions disrupted.

    I started a blog to help get me writing again and joined a poetry group to help train my brain. I was offered a full time three month contract (and as I hadn't worked since the start of the year), I accepted the office based job.

    Fortunately for me, the job was one that I did before my accident, which meant that I was surrounded by familiar colleagues. The familiarity element was very important for me, as was the routine of just working.

    Initially, I was having to re-learn basic things on top of my job, this left be even more fatigued. If I hadn't been to a place since my accident, I had to relearn the route(s).

    My colleagues were very understanding and supportive during my time there, which helped! The ins and out of the job started to come flooding back but I won't lie, some days it was very hard.

    I had days of being crazy tired and I wondered if I could make the three months. I have largely got by on: caffeine, large doses of humour and exercise.

    Some how I've managed to get by - regularly going running, do yoga and learn to box (lightly) to improve my hand and eye coordination. As my fractures have been healing, my brain fog has lessened.

    On my worst days I would just go home and sleep and just get up and go back to work. On average, according to my Fitbit I was sleeping restlessly for 5.5 hours.

    Today, is my second day since my contract has ended and I'm enjoying a well deserved rest.

    I personally find that being around calm people, like minded caring friends and quiet/serene places incredibly helpful and getting better at listening to what my body needs.

    Keep going from strength to strength.

    Best wishes,

    May

  • Hi, thanks for your reply, I think doing the keep fit bit and being around the calm like minded people sounds great and just what I could do with.

    like you I have been on many walks and spend as much time as possible in the countryside by rivers and waterfalls and feel much more relaxed when I do this than staying home.

    glad you are getting better doing things this way

  • Hi, about an earlier post. Get in touch with Headway. They have an information card which you keep in your wallet to use when needed. On one side it has ( i am a survivor of a brain injury. I may have problems with speech. A bit slow to answer. Seem confused. I would be grateful for your help and consideration) words to that effect. The other side has Headway brain injury charity with their phone no. And a section for you to put your name address n phone no.it is a good card to have.explains your circumstance without any embarrassment. Take care H

  • Thanks for the tip John, I may do that just to be on the safe side.

    Kev

  • Hi again

    Since my op 10 years ago, the fatigue has plagued me, its something that I have had to adjust to and learn to live with, I have good days and bad, depending on how much I have pushed myself. I seem to function at work, which fortunately is only 3 days a week in an office, but if I overdo the housework on a day that I am feeling that bit more energetic etc, it can set me back days, so now I have to plan what to do and for how long so that I don't burn myself out and come to a complete stop, I sometimes feel like one of those wind up toys!!

    Winter is much worse, and I often find myself needing an afternoon nap at the weekends, so I just go for it, it messes with my sleep pattern a bit but I feel I do benefit from it and actually need this extra sleep at times. Stops me being less grumpy with my loved ones too.

    I have some tired days, which usually entails feeling totally brain dead, not being able to concentrate, not wanting to hold any type of conversation, or leave the house, not tolerating normal noise around the house etc. These days are not great and I feel very guilty on my family when I have one of these days, but they understand after all this time, its not something I can control. Its not a great way to be but there is not much I can do about it all. At least I am still her eh!!

    Take Care

    Jules

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