Post stroke fatigue

Hi i have recently had a stroke and was wondering if anyone is suffering from fatigue as i am never felt so tired and lack of energy

Dear Mark
Most stroke survivors (SS) have excessive tiredness and fatigue. In the early months this seems to be related to your brain carrying out "rewiring" and it needs you to rest while it repairs. Then after that many of us have stroke fatigue or tiredness, for which the medics have no explanation, yet.
Please do not "fight" the fatigue, go with what your body is telling you. Just keep hydrated so that your brain has adequate liquid.
Some SS have slept 22 hours a day.
In a nutshell, it is normal to feel very tired. For a long time.
Colin

Thanks for that collin its really difficult to explain to the family how tired you actually are i just feel like lying on the sofa all day its bad enough not having full use of your body but the tiredness is really interfering with day to day life

Mark, Colin is absolutely right. I am 17 months post-stroke and still have to have bed rest for an hour every afternoon. No point in fighting it. The brain needs that rest. I can have the occasional day without rest, but have to prepare for that in advance. Mine hit me the second day out of hospital, but back then I literally slept for several hours every afternoon, when it comes on, I feel fuddled and foggy. My physio told me eventually to stick to an hour and not go into a deep sleep, if possible. With some, it gets easier, but I still live with it. But I am 73, so age is a factor as well.

I have fallen foul of the dreaded fatigue. I was one of the lucky one who was reflatively fatigue free for the first five months. Guess the brain has decided it needs a break (or preferably the sunshine back). As the others have said you need to rest and let the brain heel.

Dear Mark
I believe the medical term is Post Stroke Tiredness, which does not even begin to address the problem. I use the term stroke fatigue which does go a little way to explaining to family and friends.
In the first weeks I realized that I needed a rest every two hours. So I would tell visitors and family that I would be going off to a quiet place for 30 minutes every two hours.
I kept a stroke diary and noted how strong the SF was.
I am sad that you already have to explain yourself to family, but its a common problem. You probably look quite well but that's not what is on the inside.
Only another SS understands what you are going through. This forum is great because lots of us are in recovery having survived a stroke.
Best wishes
Colin

I’m ten years post stroke in the New Year and still to this day suffer from fatigue so for some it does not always go away however after a few years of practice I can more or less avoid it and very rarely have to sleep during the day now.

It’s a very strange thing though because even something as simple as opening an enveloped letter and more precise putting the letter back into an envelope can set off the fatigue require having to rest (but not sleep) for anything from ten minutes to an hour.

I used to explain it to my doctor as being like a battery in an old smartphone were after a couple of years of charging and discharging the battery starts to pack up and although the battery is showing 100% charged at the start of the day and halfway through the day still showing 80% charged the minute you actually use the smartphone to make a call the battery goes to 0% charge and turns itself off.

I have to say after all this time it still puzzles me.

ChrisK's comparison with the out of date phone battery is very amusing and apt. It is probably nearer the truth than the 'brain re-wiring' story we are given. I am long-in-tooth and it is difficult to differentiate between stroke tiredness and old age, but on a good day I sleep 9 hours overnight and get another one hour in the day after lunch.
The overnight sleep is punctuated with periods of being awake and bathroom calls so it ends up a lot less than 9.
My eyes and brain tell me when to 'crash' and there is no dodging it or I am like a Zombie!
Deigh

This is very interesting. My husband post his stroke is extremely tired. The trouble is, I have to work around this as his wife/carer, but he often doesn't want to start the day at all. I feel bad for getting him out of bed, but worry about pressure sores and he has a lot of medication to take, so this needs some time management. He has a catheter which I have to empty, or he will get a bladder infection. He also has bowel problems. I have to keep him clean and fed, but he wants to sleep about 8 hours a day. I also have to run the house and do the shopping, so need him to be awake so that I can tell him I'm going out for an hour to get food. I think maybe he was sent home from the hospital too soon. I thought I could get him up about 7am and get him washed, fed and medication given, then let him rest, then lunch and another rest, with maybe some walking with his zimmer frame around the flat and then rest in the evening again. But, he's just sleeping all the time and won't budge and we have no routine.

Dear Sunset
Your thinking about up at 7am, rest etc is very sensible. Exactly where I started. my morning regime.

At some point it will also be necessary for him to spend the day out of bed, but you might need a professional to indicate when this might be relevant.

I think you need a minimum of two hours a day when it is your time. Maybe one session of two hours or maybe two sessions of one hour. He needs you. So he needs you to be fit and not exhausted. You cant do 24/7.
I think you could maybe try working on a way to leave him alone. Perhaps a big written note if you leave him whilst he sleeps (?).

Stroke recovery is dominated by being slow, oh so slow. Do keep a diary of how he is. And how you cope. Days slip by and its good to have a written record of where the recovery has been going.

You need professional help. We have an incontinence nurse who visits and gives advice. Do you not have a back up medical team ? I had six weeks of a team coming to my home, that was brilliant.
Have you tried the stroke association. I don't have them in my area but there is a voluintary group who do a decent job of offering help, ironically they are particularly strong on helping the carers. My GP surgery had details (staff knew about the options, no need to trouble the doctor).
My village church is also a great source of info and help. They have so many contacts.

The sleep thing usually improves, by way of getting less and less. But getting up each morning is an essential so that might be your priority. And in due course you need to accept that the only person who can get the stroke survivor better, is the stroke survivor. You cant mend him. The medical people cant mend him, he has to want to get better.

I do feel for you as well as your partner.

Best wishes
Colin

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