chronic fatigue

[eileenleach]

i had two ops for brain anyeursms in may n june 2014, i recovered pretty quick n thought all was good, then suddenly i developed a need to sleep 4-5 hours a day n still sleep 10 hours a night but this is not everyday probably 5-6 days a week n my doctor didnt av a clue so i asked for referal back to neurologist so they could answer my questions, they diagnosed chronic fatigue syndrome, all they want to do is put me on anti depressants i refused cos i dont want to spend my life on addictive tablets that will probably give me more symptons, i then went back to doctor after hospital sent a letter diagnosing me n they to mentioned anti depressants, i thought id try prozac, one a day, when i went to pharmacist he told me they could cause drowsiness which defeated the object although i still tried them cos i cant cope having no energy n sleeping my life away, tried them for a month no joy so went back to doctors she upped the prozac to two a day, i asked for referal to a fatigue clinic cos i want help not tablet, iv been referred now n waiting to go meanwhile two tablets a day didnt work so back again, three prozac a day n still not working im probably sleeping more with the tablets, i couldnt work if i had to its even exhausting drying my hair, getting a shower is to much effort n i spend most days not even getting dresses cos i dont feel i can be bothered, cooking a meal is ok if i shove oven chips in n a piece of chicken in breadcrumbs in oven but most of time i eat noodles because im hungry n its simple n easy, i was at one point low on vitamin d n enemic probably with eating noodles n quick foods so my neighbour began to make me dinners with fresh veg n meat 4 days a week n the anemia n vitamin d defiency has gone now but still tired, will thsi ever go away

[Kirk5w7]

This is a difficult one to answer, as I think you've already proved that even the experts don't know. Trial and error on your side I think. I took antigpdepressants for over 3 years and have finally been abke to ditch them but I'm still suffering with the fatigue and probably always will.

The hospital prescribed the anti depressants when I was first I'll and my GP continued with the prescription til I felt able to ditch them, with the proviso that I only need to ask to be put back on them, I've never felt they affected me adversely, maybe I was lucky, who knows.

I suffer all the problems you describe, I need to rest after getting showered and dressed in the morning but I always get dressed, they made us do that in the rehab clinic, it defines the day.

Cooking isn't good either, but I keep Complan and similar in the store cupboard for those times I really can't be bothered, but I try to make myself cook the evening meal, my husband deserves to come home to a cooked meal, and I can usually muster the energy required, I plan the meals at the weekend but I leave one day so I have to go out and buy ingredients, it makes me do things and helps the recovery.

Take care and stick with it.

Love Janet x

[randomphantoms]

Hi Eileen

How can I break it to you? You are just over one year into your journey and there is a long way to go.

Janet is right making yourself do things even when you don't want to is important for making progress. I am almost 3 years on and still have to do my physiotherapy every day just to keep the progress I've made.

Could you get the GP to refer you for counselling rather than the medication? Many people go through a period of depression and it can be brought on by not knowing how to cope with the new you or being able to accept the new you.

Lovenhugs

Xoxo

[Vickyvicky in reply to randomphantoms]

Very true about knowing who the new you is and then coping with the new you and I've found famy make no allowances for my vast changes and get cross if I say I am different. They just demand "I get on with It" no explaination from me convinced a then of how I could be hoed now. THEY all know best for me. God it's so stressful this way. Just keeps putting me down and refusing to taking my issues serious as as permanent. How can I get my message a cross to them. It make me feel very isolated.

Vicky xx

[Vickyvicky in reply to randomphantoms]

Your answer is so true. I am 18 months in after a brain aneurysm and feel I am nosediving into depression. Nothing but pills pills and more pills. I don't think the same. I don't remember the same. I cannot make any decisions. I cry at sndything. Happy sad difficult. My emotions are right on the surface. I can't spell or write. I can't explain. I look the same. I talk - sometimes- the same. Famy insist I just need to do this. And need to do that and get on with normality. They fail to believe I have no normality how they used to know me. I have migraines everyday. I can't even go out alone now as my brain just blanks and can't even think where I'm going to. Hmmm. Doom and gloom at the moment but my moods yo yo up and down. I was an English teacher, a cbt counsellor, a pilot and a total go getter in my past. Now I struggle to get up and feed myself. They fear I may have another aneurysm because of all the migraines again so more MRI's. I have no counselling, no referrals for rehab. No help and I live alone with lots to run as usual in a life that had been full. Any tips or encouragement, or something to help my grown up sons understand what's happened better would be very welcome. 😊💕

[randomphantoms in reply to Vickyvicky]

Hi Vicky

Please contact Headway 0808 8002244 and at least try to find if there is a local group to you.Although groups are different many can offer support and information for relatives as well as the bi survivor.

My experience of making progress really began when I decided to focus entirely on one thing at a time and boy is it an interesting journey. It may sound daft but I dropped a file into my brain to collect words cos the vast majority of mine had gone.

When there were enough words I started trying to talk properly and went through a phase of what was VERY like Tourettes. Only to find I was fluent in words I didn't know I knew.

Need to go now will try to remember to finish this later.

Give me a reminder about 9 if I forget.

Lovenhugs

Xoxo

[randomphantoms in reply to Vickyvicky]

What I was trying to say was to try to focus on one thing at a time in whatever order is most important to you.

Learn to recognise when you are doing too much. And, if you can, get your GP to refer you for counselling to help you come to terms with the new you and what has happened.

Xoxo

[cat3]

I often can't be bothered to cook either and, as there's only myself to worry about I have microwave meals every other night with a tinned fish salad on nights in between.

The microwave meals have improved greatly in the past few months, especially Sainsbury's range. I have cod in parsley sauce with veg, chicken tikka, cottage pie etc. There are loads more to choose from, reasonably priced and take around 6 mins to cook. And they are good quality and nutritious.

Please be assured that fatigue is a massive problem after a brain injury and most of us here have struggled with it (and still do). Yours sounds extreme which suggests other triggers besides brain fatigue, such as depression and malnourishment.

I feel for you Eileen (my name too) and I hope you can develop a routine of eating well and taking regular walks (or other exercise) and generally being kind to your body. And keep talking to us here regularly ; talking really is good therapy when it's with folk who 'get it'

Whatever else you do, please don't berate yourself for sleeping too much when it's what your brain/body is craving.

My best wishes and a cyber-hug, Cat x

[trelfy1]

I was in a similar situation to you, recovered quickly but the crashed. I recommend you go see your gp and get referred to a neuropsychologist- she's been the only non-brain injured person that has seems to understand! Whilst I've now realised its gonna be a long recovery, I seem to be able to manage my fatigue a lot better.

[Gaia_rising]

This is the thing that frightens me most, now I have come to terms with not being as physically capable as I was 'before'. 'Before' has gone, and it isn't ever coming back. I'm in a peculiar situation, I work in a school, and it's week 4 of the 6 week summer break, so I'm not 'in' the office. I'm still working remotely, and, over the next two weeks, I'll probably go in a couple of times, to set up for the new school year.

I went back to work faster than a lot of people would have liked me to have done, I had a ruptured aneurysm 27/2/15, and was back at my desk six weeks later, albeit part-time initially. Still sticks in my throat that the Easter holidays meant I was 'off' six weeks, instead of four, but that's the kind of ratbag I am, I always have to have something to kick against.

These last four weeks have been a sort of vague, wonky version of me, because I haven't had the hectic structure of work to keep me active, I've had more fatigue-crashes in the last four weeks than I did in the eleven school weeks between going back to work, and the summer break, I've been a zombie in pyjamas for a month, to put it bluntly. For me, that's because my routine has been disrupted, and I've had more time to sit in the armchair, playing "What's THAT pain?" I'm always a bit crap during the summer break, it's a running joke that if I don't set alarms on my phone, to remind me to eat, without the school bells telling me it's lunchtime, I wouldn't eat at all.

I am getting up every day, but some days I do go back to bed, last week I had two days where I did pretty much nothing, and then tried not to poke people in the eye when they said "It's OK, you NEED to rest."

About seven years ago, I was quite emotionally unstable, and had a two-year period on anti-depressants. Some people do find the right chemical cocktail to keep them functional, I never did, and eventually step-down weaned myself off the medication, under medical supervision. For me, the anti-depressants took the edge off me, and I didn't like a part of that, the not-caring, the way that everything was a bit vague, and fuzzy around the edges, I need my sharpness, and my speed, Prozac, and the other three versions that they tried made me slow, vacant, docile, and I don't like that.

To echo what others have said, fatigue and depression can mimic each other, it's not a cold/flu analogy, neither one is worse than the other, they're similar, but not the same. Our re-wired brains take longer to process some things, and, sometimes, they decide to take the day off, which is difficult to articulate to 'others', because we look a lot like we did before, so some people expect us to be able to behave like we did before.

I'm rambling, I do that a lot, it could be that the SSRI's are exacerbating the fatigue, and that needs investigating, and rectifying if proven to be the case. We're all different, and we all adapt differently, you need to be under the care of the right type of medics, if it's your GP prescribing the Prozac, you need to remember that they're more used to treating depression than they are brain injuries, and you might well need referring on to a brain injury specialist.

[EleanorS]

Please get your vitamin b12 levels checked and get a thyroid check, if they've not been . These are very common things that can be out. they might not be the whole story, if they were low in you. But hypothyroid and low b12 are fatiguing condition s , be as well to rule them out. Make sure your iron and vit d stays in range of they are low they are fatiguing also.

I think I slept an awful lot in year1 after encephalopathy etc . I don't know why your neurologist has said chronic fatigue syndrome, maybe consider seeing another neurologist. Year 1 was just a blur for me. I hope that you will see improvements in year 2 and year 3.