Hello,
I had my 2 strokes in July 2017 and recovered very well. I still get tired though, sometimes more tired than other days. Can anyone tell me how long will this last. Some days I feel really great and get on my bike and go for a ride and other days feel I just want to rest. I'm fortunate that as I live alone I can go to bed whenever I feel like it and not worry about affecting others.
Does how much I weigh have any bearing on tiredness?
Regards
Sandie.
Dear Sandie
I doubt that your weight impacts on stroke fatigue (post stroke tiredness).
I try to monitor my SF. If I rest enough then the SF is low. Overdoing anything and the SF goes high. If i overdo on Monday then I get bad SF on Tuesday and some SF on Wednesday.
I did have two occasions when it left me completely and those precious hours were wonderful.
Regret to say that there is no time limit on SF. I worked away at the resting etc for two years as this seems to be a typical length of time for our brains to be working hard at recovery. But now I just try to live as best I can with the SF being a rather massive part of my life.
The fact that you get whole days clear does seem very hopeful indeed. I only get about 45 minutes then the SF comes down, or alternatively I only do stuff for 45 minutes and then rest before the SF starts.
And maybe just maybe the researchers will soon discover why the SF occurs and how to deal with it. It seems that ME sufferers have a very similar problem, so there is hope for a break through.
From what I read , younger (eg 40 and under) SS can do substantial exercising and that might help with the SF.
Never give up, there is always recovery to be had.
Best wishes
Colin
Hi Colin,
Thank you for your reply.
I usually know when I have overdone it but that doesn't stop me trying to do more. It's the way I'm made, never giving up. Roll on retirement!
Sandie
Dear Sandie
There is clearly some times when pushing to do more is a good thing. There are clearly far more times when pushing to do more is bad news. The trick is to discover when to stop. And no one can tell you, you have to work that out yourself. Your poorly but amazing brain is rewiring and needs rest and consideration. Our brains do not feel pain, so it cant tell us when we are hurting it. Pretty sure that for three months we must let our brains recover. In my opinion it is certainly nine months and probably twenty four months. I wish our medics could tell us but they cant. Well not yet anyway.
Retirement is the best part of life. I do hope you can recover so that stroke damage doesnt spoil your retirement.
Best wishes
Colin
ps Stating the obvious: I am not medically trained, I just quote my own experience plus what other stroke survivors tell me.
Hi Sandie,
I still get fatigue 5 years on. I have trained myself to have power naps. I have limited them to no more than 15 minutes. The alarm on my phone is useful for this.
Hi Colin,
At the risk of sounding daft, what's SF?
Dan
Hi - I am almost 2 years post stroke and still get stroke fatigue through the day. I generally have a rest just after lunchtime. At first this was for 45mins and no more. I am careful not to allow myself to fall asleep as I did this once and it took me almost 3 days to recover and get back into some sort of rest 'routine'. Now I find I feel refreshed after 20mins most days and 30 mins on some days if I have had a busy week. I walk as much as I can around the shops and try and have a walk after my rest at lunchtime which sees me through bedtime.
I mentioned to the practice nurse that I was concerned I had put on half a stone since my stroke. She said it was the blood pressure tablets that was causing the weight gain but sadly there's nothing they can do about that as they keep me alive! However, I recently had my gallbladder removed and have noticed that my weight is now coming down slowly but surely. I have now lost 6lbs since my operation and I'm hopeful this will continue. I don't think the tiredness affects the weightgain as such but more your body readjusting itself to the after affects of the stroke/s and medication. It's good to get thyroid checked out as well because if that is low, this can cause extra tiredness.
Medical term is "post stroke tiredness". But I have called it stroke fatigue as it describes the affliction better. Hence SF. The bain of my life and by far the worst after effect. It does ease as the months tick by, but I search in vain for a way of eliminating it.
What about that Addenbrooks operation on the ten year old girl then ? Brilliant. And she seems to have a total recovery. There is always some good hope on the horizon.
Well done OAU.
It is always nice to hear of other SS ideas and you are particularly clear with your comments and observations.
I monitor my weight carefully. I agree that our new selves need to readjust and that we cant eat and drink what the old selves did. I am slowly edging my weight down and I am rewarded with fitting easily in to my trews. I only need to stop a fraction of the snacking but it makes a world of difference.
ttfn
Colin
Hi
I am 3 years post stroke and have been experimenting with things to try and explore the limits of my fatigue. I have discovered that emotional stress even more than physical exertion brings on a bout of fatigue. It comes in episodes of anything from a few days to two weeks. I have experienced what I am beginning to accept as a new normal. It is a general hazy tiredness that I wake up with and persists through the day. I can function but I don't like it and it often lowers my mood. Occasionally it is heavier and then I can't do anything much. Sometimes even too fatigued to rest properly " unrest" as a friend with chronic fatigue syndrome calls it.
I very rarely feel refreshed after sleep, but have learned when I can push through the haze an when not. Very occasionally I have a day without the brain fog, I enjoy those days as little treasures, and try and remind myself that they do come around from time to time.
Keeping hydrated helps I have found.
Maybe things will change a little more this year, I have removed a big stressor, I was in a very toxic workplace, we have now parted company and I am beginning to enjoy the relief of that.
Good luck and keep us posted
Tony
Hi. I’m 11 years post stroke now. I was 42 at the time and I’d say it took a year for the extreme fatigue to subside however at times now it’s as if I’ve hit a wall and NEED to rest, not for long and then I can get going again. Every stroke affect people differently remember so just listen to your body and don’t overdo it.
Hope that helps.
Marita
wow, 11 years you are a real veteren
how did it affect you?
I am struggling with some significant physical impairment, some fatigue issues. I don't know how far I can recover the physical functions and get very frustrated with them. I know recovery stories are all different but I do take heart from those who have had particularly long journeys. I would be interested to know more about your story if you are willing to share
many thanks
Tony
Hi Sandie,
You should Google "A letter from my Brain" it really makes you think.
Hi Katyb, Just read the letter you suggested to me. Brought tears to my eyes!
I had a consultation with a nuerologist as things didn't seem to be going right but she assured me that that soft lump in my head was functioning as well as could be expected so that was reassuring for me and my family. The stroke has been a learning curve for them too.
Sandie
It's really emotional, my husband has printed it & framed it for me. Think the worst thing is the fact that we're all different & all affected differently. I know I thought that when I got home it would be back to how it had been - how wrong was I? On the positive things are getting better every day as I'm not allowed to drive just now I've found that I'm eligible for a bus pass so will give me more independence. Hope you're doing well
Katy
Hi All I just joined this forum and have found it helpful already! I had a stroke 6 months ago and am still waiting for my first appointment. I think i have Stroke Fatigue (SF) as I'm sleeping really well every night, but waking up tired. After an hour or so of activity, I kind of 'crash' and suddenly need to rest immediately. I first noticed it when we were away in Brighton for a break, and found that while walking round the shops, I was suddenly scanning for a bench and had to rest for a while and no, it wasn't an excuse to get out of shopping lol.
A couple of weeks ago I made a gate for a local charity I work for. It wasn't physically hard, but I got up and walked across the grass to get some screws and found myself staggering like I was drunk. I had a rest for 15 mins and felt better, although still tired, I carried on.
It's really frustrating for me, as I always have plenty of good ideas on what I'd like to do, but find I'm too tired to start, become too tired after I start or make a mess of it and give up. I also have the concentration of an ant :-). I feel as though I'm in limbo a lot of the time.
Does this ring any bells with anyone else?
Cheers
Steve
Steve, post strong fatigue is very common. It improves over time but can linger. I am five years post stroke and get fatigued every day around noon. I nap for an hour and then am okay till 11pm. I find it odd because every day I get up at 8am but am shattered by noon, but then fine after my nap.
Hiwever, if I do too many tasks in a day that also shatters me. The advice I got was to take periodic rests during the day and not to nap for more than an hour. That seems to work for me.
The Stroke Association has some good information on post stroke fatigue, but it is an affect effect of stroke that appears to be under researched.
Dear Steve
yes this rings bells of agreement.
one area that might offer a glimmer of hope is the work being done to help the CFS version of ME.
By the way, the term Stroke Fatigue probably doesnt feature in medical records. It originated a few years ago on this site.
i followed the mantra of "dont fight it ".
i learnt how much night sleep i needed then stuck to that. In addition, i then took naps througout the day, to reduce the impact of SF.
our brains have been damaged and need to recover or mend. So yes, the brain will try to close you down whilst it carries out the repairs. Six months is early days. Your recovery so far is marvellous.
i am no medic. But i would want to consider the aspect of waking up tired.
many of us find that SF will fade and after about two years will then be insignificant. A few of us have it for longer.
nice you have joined us
colin
Hi Colin
Thanks for the warm welcome and good advice. I see I'm going to have to experiment a bit to find my own balance. I didn't mention I just had a blood test to try and explain the tiredness and this showed no problems at all, which is how I ended up here. Just to confuse it all, I'm just coming off Quetiapine for bipolar, which I initially thought might be the withdrawal symptoms. Weaning off Quetiapine is quite a challenge but I've been told it's unlikely to be the cause as usually increasing the dosage causes the symptoms.
After all that, at least I may now have a reason for the tiredness and thanks to the advice, a way of adressing it as best I can.
My next step is to get fit as I've let things slide a bit. I went on a bike ride this morning, just a couple of miles on the flat so that's a start. Softly softly...
I forgot to mention in my first post that I was very lucky with my stroke which was described as a right cerebral infarction, which I think means a bit of my brain is dead. However, I've got no speech problems or limb weakness, so, as I say, very lucky. Memory could be better.
Cheers
Steve
Hi Jeff
That's very helpful thanks. It's good to hear others experiences and see how they fit into yours. It seems I'm going to have to change and listen to my body, something which really isn't my forte lol.
So we have a kind of secret illness then? Well +1 for the forums where you can meet others and get their experiences lol.
Any road up, thanks for your reply and best of luck :-)
Cheers
Steve