Severe fatigue and lack of energy, is this normal

My husband had his stroke just over a year ago and with rehab has done really well. He is now able to get out of bed, walk very short distances with a frame and sit in a chair for several hours. Recently his progress has stopped because of fatigue, he runs out of energy and physically can’t do things. He spends lots of time sleeping and has very little interest in anything apart from staring at the television. Is this a normal part of recovery?

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Welcome @NellyC fatigue is very normal following a stroke & it can stop us progressing as much as we’d like to. If your husband needs to rest then its important he does but he should also try a bit of activity as this is important too. If it is a new symptom for him it may be worth speaking to his GP just to rule out other causes for the fatigue. As daft as it may seem watching TV isn’t resting as it still stimulates the brain & this could be feeding into his fatigue. I know when my fatigue is at its worst I can’t cope with the TV being on.
Wishing you all the best.

Ann x

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Post stroke fatigue affects most survivors, but his problem sounds excessive. Progress after stroke can plateau after six months but it does continue. One issue governing fatigue is lack of stimulus, but it can result from doing too much. Because I can’t do what I could before my stroke, the temptation is to do nothing. I suggest you talk to your gp as none of us are medical experts.

Hi @NellyC, sorry to hear about your husband’s stroke and progress concerns, you will get some great tips and hints on this site from fellow stroke survivors. Hopefully you will be back soon to let us know how he is recovering.

Take care, Bert

Shwmae @NellyC, fatigue indicates that his brain is working harder, it may need to rest longer. It’s both a good sign and a burden we all endure. Each time progress is made, the brain needs to retain and develop that ability while tackling additional things.

It’s like adding more weight to a dumbbell each time the current weight can be lifted, and the lift gets harder.

Television can be a great way to drain the mind. I relied on many light-viewing programmes to whisk me away before I had to then go back to addressing my immediate surroundings.

If you are worried about his overall demeanour or mood, it would be advisable to contact a mental health GP. Sometimes for me, just the effort of thinking about the effort of doing something is too much of an effort. This may be counterproductive if prolonged.

Thank you all for your responses, it’s reassuring to know that there are others out there that can provide insights as to what is going on. It is hard as a carer to watch someone you love try, and frequently fail, performing very basic tasks; the instinct is to jump in and do everything for him. I know this is wrong and I force myself to stand back so he can find his own level of independence.

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Hi Nelly, welcome to the forum, sorry your husband had a stroke. It’s been 2 years since my stroke, and I still have days where I get very tired and do not want to do anything, but I push myself to do things even little things.

Hi NellyC
I can only speak for my mother who has been home 4 weeks after discharge.
Fatigue is immensely common.
I was worried about her for a while but have come to accept things and let them play out. The one thing I am still worried about is the lack of movement and potential deterioration in muscle/joint strength and mobility.
How old is your husband out of interest.
Thanks. Ian.

Muscle atrophy can lead to other complications. It’s a good idea to keep an exercise routine up even in supine. Gentle exercises keep the brain in touch with the muscles via motor neurones.

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Hi Ian, my husband has just retired and when he first had his stroke could barely move, his right side was completely paralysed and left side very weak. After some help with occupational and physio therapists he is now moving better and walking a little. He can sit in a chair for much of the day and has come a long way from where he was. Daily exercise and repetition was the key to this progress. I hope your mother can make as much progress.

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Well done! That motivation to daily exercise won through. My husband gave up far too soon. He is still in effect paraplegic - both legs don’t want to work. He can raise the left but not bear his weight for more than 30 seconds. I reckon he could if he was willing to work at it. I gave physio up as we had a trip of 36 miles to take to get to one where they were willing to help but he wouldn’t go often enough and we didn’t have the money to continue with it as they had to charge [not NHS but a charity].
SO well done to Ian and yourself for keeping on going!

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Hi AnneC, sorry you had such trouble accessing the required support. My husband is not able to get into a car so the OC & PT came to the house, made it much easier. We set small goals all through the process and as each was achieved we created more. Current goals are independent access to the garden and getting into the car - unfortunately coming into winter makes trying these harder.

Thanks for responding. My husband gets into a car seat with a lot of effort from both of us, but he hates being driven, as he gets vertigo looking out the window to the side or front and refuses to use blinkers or even dark specs. So he only goes for medical appointments and occasionally goes other places as needed. He still gets tired too easily to my mind, for 6 years after the first of 3 strokes. The first wasn’t even diagnosed till the 2nd 3 months later despite a ‘howling headache’ for 48 hours; he was sent home from A&E at 1am told to take a paracetamol as if we hadn’t tried that for 48 hours. The lack of physio work is largely due to lack of NHS availability after the first 12 weeks of the 2nd stroke. He didn’t get any after the 3rd! We found it ourselves but as I said it was 18 miles there and 18 back and it was like he had a panic about it for 24 hours before we went. So with that and expense we stopped it. Initially in the second lockdown, it was on video but that was limited to gear at home and we didn’t have much. When the physio did manage to visit she got him to get into his wheelchair by himself [real progress] and make a cup of coffee in the kitchen; he won’t do it nowadays. Lazy? He didn’t have motivation somehow. Sadly. His mobility, speech and concentration ability are affected on top of what was diagnosed as Cerebral Palsy a few years before the strokes! So keep your motivation going and if anyone has tips on how to remotivate my husband, do send them! Thanks.

Thanks NellyC. What was the timeframe for your husband in terms of progress? Did he readily apply himself or did you have to encourage him? I’m not sure I can do any more than I have done.

That must be tough Anne. Best wishes to you and your husband.