I am 9 weeks post stroke,
I feel blessed with the speed of my recovery. I have been back at work, 3 mornings per week for the last 3 weeks. And look fully recovered to others, and sometimes I even forget that ive had a stroke as I feel so good.
However, the fatigue I feel is strange and horrid. If I wake up naturally then I feel fine, but the 3 mornings i get up early for work i feel dreadful for about 10-20 minutes. Its a strange feeling in my head and it takes me a while to come round and to start to function normally, The feeling is hard to explain, but i would describe it as if my brain is being squeezed.
Then when I get home from work after about 5 hours and after some lunch the fatigue kicks in quickly and i have to go to bed for a couple of hours, within minutes I go into a deep sleep if i wake up naturally I feel refreshed but if not I feel dreadful.
Does anyone have this type of fatigue and feeling in the head or brain itself? Also in your personal experienes, how long should I expect to be fatigued in the day time that results in having to go for a nap?
Thank you for all time, and I hope that everyone is continuing to recover.
Post stroke fatigue is widely known about but little understood. The Stroke Association has written quite a good explanatory leaflet. Fatigue affects people in different ways. Mine kicks in every day about 11am, when I have only been up three and a half hours. I stick it out for about another two hours then have an hour in bed. Physio recommended me to rest/ drowse but not to go into a deep sleep. I was told not to rest for more than an hour. This works for me and after getting I can then last till almost midnight.
It is very hard to describe how it feels. It's not just lethargy, it's like a mental fog in my head. If I miss this nap, the fog seems to get worse. Doing too many tasks in a day, or dealing with a lot of conversation, seems to make it worse. But, as I say, I cannot describe it. I get it every day and, unlike others, it doesn't seem to want to leave me. It doesn't affect my ability to sleep at night, because I sleep quite well.
In a nutshell, I have learnt to live with it. Not sure if my post helps.
Thanks John, a helpful reply, how long have you had the fatigue for? Has it got better in time or does it remain the same?
I am for years post stroke. The fatigue kicked in on my first day out of hospital and has never left me. It has eased, because when it first kicked in I needed three or four hours sleep in the day and an early night too. It's now down to an hour. However, as I am now 76, there may be an age factor involved. I just go with flow nowadays.
im the same as you it's been about 9 weeks since my stroke and pretty much back to normal physically but the fatigue is ridiculously bad and I understand where you say it's hard to explain the feeling.
remember though you are doing well with being back in work so soon, well done
Thanks for your reply Jayc, really pleased that you're back to your normal self. Some scarey times behind us, hopefully just bright days ahead.
Not sure if you guys can take anything from my post but I am 25 years post stroke this year and have constantly struggled with fatigue, but learnt to manage it. Last year however I had unrelated spinal surgery that has triggered really bad fatigue.
It has left me with strong views and opinions on what it is, what causes it.
I think everybody’s stroke is different therefore their recovery in nature and time will be different.
Good luck to you all.
Today I booked appointments to start me off on a road that should clarify fatigue.
I will report any goos news.
Very interested in any views to see if they match my own.
Hi Colin, I know I don't need to ask but... please keep us posted, I'm sure we will all be very interested to hear any developments. Very best of luck and good wishes, Nic ??
Will do. I re read my post and was pleased that I will be telling you all about gooses.
Whilst here, I must add how much I enjoyed the mild weather today. I actually quite like winter. I tolerate cold better than hot. But it was so nice to get out and potter for a few minutes and forget about these aches and pains and the wretched fatigue.
The car might get washed if its the same again tomorrow.
Yes East Anglian sunshine was a real treat today ☀️ My small country road is a quagmire, the car is just caked in mud, but I can't see the point of having it washed as it will just get another coating of MUD as soon as it moves a few feet from the drive!! ? My husband has been outside in the garden, placing out about 20 fruit and ornamental trees, ready for our lovely gardener to plant out. Unfortunately he's now completely whacked out, the price that SSs pay for any activity ?. A few yeards ago, he would have been able to plant them himself, and then start tackling all the shrubs!!
Anyway good luck with the "gooses" that will be fun!! ??
So how long can hubby do activities such as placing trees, before he is tired out. And when he is tired, does he collapse or is it "just" tired ?
I was thinking. Thats a new development, thinking. I can at the very best do 6 hours activity. Which means 10 hours resting. Pre stroke I could quite easily do 14 hours of garden pottering. what an instant change
We are so lucky down here in deepest rural Essex. It is a zone of shingle and sand, so the top soil dries very quickly. We are 160ft above sea level so the drainage is good. And there are streams then rivers to carry away surplus water.
Shame planning seems to think its a good idea to build eight million new houses. What happens when we want the sand ???
In persuance of CFS or whatever,I have got my first two appointments, for blood,BP etc tests.
The medical system for us is crazy. I shouldnt be using the local GPs for this. It should be dedicated staff. And they would be well versed in us SS.
Time for a cuppa then more rest. I dont tire when I watcgh TV nor using my PC. Thank goodness.
Hi Colin, when my husband was placing out the trees, he was carrying each one to the wheelbarrow, and then taking about 4 at a time to the end of the garden, about 45metres. Ground is somewhat uneven, so he's a bit wobbly! He managed to move about 20 in all, but he was really struggling. It took him about half an hour/40 minutes, but by then he was almost falling over. He managed to flop on the sofa, hardly able to speak - it was too much effort. I just left him to rest. Unfortunately his stroke recovery has been seriously compromised by the chemotherapy he had between June - October 2019, he's still not back to anywhere near his previous level. His best post-stroke period was Autumn 2018, we had a four day break in Brugges and he walked for miles every day, with breaks in between, but we would perhaps walk around the city for an hour or two before he began to 'flag'. We'd both be delighted if he could get back to that stage in the near future. Over C'mas and New Year we did a lot of walking, and he was beginning to re-gain some strength and conditioning, but this has dropped off recently as we have been so busy with the company business.
I'm sure this will begin to improve soon, as he leaves behind the 'chemo fog'.
He's really enjoyed planning the garden, (we bought an additional piece of land last year which has more than doubled the size of our existing garden). It's a big space, and far more than we can manage ourselves, but we have a lovely gardener and he's helping us to realise our vision for the new garden!!
I think he may soon have to help out a bit more, as I have developed a large lump on my back which is being investigated, but I have a nasty feeling that it will require surgery, and I may be out of action for a while, but we'll cross that bridge when we come to it!!
Looks like we'll have to batten down the hatches soon, as another windy storm is coming in from the west ...
All the best, Nic ?
It is really hard to track SF let alone when it is compromisd by chemo. Or indeed any one of a series of serious medical issues.
We are all different. Hubby is possibly at about my stage in SF but for totally different reasons. I havent had any extra medical things beyond the gaggle of issues that stroke kindly donates.
My lack of progress has lead me to have another go at the NHS. I am not at all sure I will get anywhere but I will share my experiences no matter what.
I get a lot of help through gentle yoga. Maybe its just my excellent yoga tutor.
I drink small amounts of mineral water (Pellegrino) together with a few red skinned peanuts. It does seem to revive me a little.
Keep in touch
The fact that every stroke is different is hard to understand. There is no way you can compare to a 'normal' stroke cos there 'aint no normal. I have worked out my own way of competing with tiredness and that is to 'give in'. I'm fortunate that there are only two of us in the flat so if I suddenly decide to 'crash', then it upsets no major time scale and my wife merely delays the next part of the day.
I find nowadays that it is quite predicable, I can last till lunchtime and then my eyes are drooping and a snooze is demanded, it can take any time from fifteen minutes to an hour but then I am ready to cope with life till about 9.30 pm. At that time I can concentrate no longer and I resort to bed leaving my wife to watch recordings of the 'Antiques Road Show'.
I have plans to challenge the routine, perhaps tomorrow I'll try them!
Hi clearly, I am 5 months into recovery and still have afternoon naps, I walk three or four miles every day and am looking good like you, the only side effects for me are lack of balance but only a little wobbely and stroke fatigue which is getting better slowly,
Remember our bodies are working all the time at double speed to repair the damage, it will get better eventually.
I feel lucky to only have slight issues, all the best, dave.
Hi, I know how you feel. I had my stroke nearly three years ago aged 63 and although it was not too severe only affecting my speech and reading etc, I recovered quickly except for the feeling of fatigue and strange feelings in my head, which I still have. Luckily I am retired so dont have to worry about work, which I dont think I could cope with. I need a lot of sleep and go to bed around 10.00pm and usually get up between 8.30 and 9.00am, and often need a nap mid day. If I've had a good night's sleep I feel good, but often I dont and feel tired and fuzzy headed all day. I sometimes get strange feelings in the right side of my head and can't lie on that side for long. My doctor prescribed amitriptylene for this which I think has helped but makes you really sleepy the next day so I only take it a couple of times a week. It helps to know that other people have the same problems, but I still worry about having another stroke when I get the odd feelings in my head. Things have got better slowly over three years but it seems the fatigue still persists!
I too find that if I get less than perfect sleep then the fatigue (SF) plays havoc. I can tell when I am sleepy tired rather than SF tired. I take naps during the day and these are usually SF naps which are different from sleepy naps. The SF naps are marvellous and I awake refreshed. I worked out that my required night sleep is 7.5hrs. No doubt we all differ.
No way could I work for a living so I am pleased that I am retired.
The odd head feelings, which for me was as though I was being pressed from both sides of the head, have completely gone ( I am 49 months post stroke). But the fuzziness or fog and extreme tiredness have continued. Tiredness doesnt really explain it, it is more like fatigue and I fall down if I ignore it.
I am starting on a trail to see what might be done. I have booked appointments to test blood, BP and so on. Two appointments in the next two weeks. I want to see if anything can be done about my tinnitus like noises. And the aches and pains but mainly this extreme fatigue. I guess it will be along the lines of CFS which others suffer. But whatever I will post on here whatever the outcome.
I hope to be positive and so I will mention that I used to get migraines, rather frequently, but now they are rare. I guess its the blood thinners.
I get through the day better when I take a break immediately after breakfast. I can be active for up to 6 hours but I have to split this into sessions of 45 minutes. I can not achieve the level that others have whereby they can be active for the morning but then need rest.
I never go back to bed during the day. I will snooze when seated or on bad days I will lie on the settee.
Yoga helps me a lot and I have an excellent yoga teacher, specializing in gentle (can be seated) yoga.
Nice to have another SS on here, well along the recovery trail.
I had my stroke April last year I get fatigue regularly and it starts in the head and washes all over my body i however don't go bed as as tired as I am i cant sleep during the day so I just rest downstairs I went back to work after 8 weeks and only work 3 days as think full time would be too much for me my stroke only slightly affected me I sometimes have limp in left leg and get slight memory loss