Hi Everyone, this is my very first post. I am 58 and suffered a stroke 4 years ago. It effected my left hand side e.g. no use of my left arm or hand, weak left leg, dropped foot and weakness in the left side of my face. Also from day 1 I experienced fatigue which has only seen minimal improvement over the past 4 years. I tend to feel most energetic in the mornings but from early afternoon I feel the fatigue creeping on. I try to push through until around 4pm and then find a quiet time to listen to the Calm App or a play on the radio. Sometimes I will sleep for 20 minutes or so, other times I simply use this time to withdraw from other people. I have tried to identify my fatigue triggers and for me meeting people and engaging in conversations appears to be the big trigger. The situation tends to be worse in large groups where there is multiple dialogue going on or where there is a noisy background, for example I struggle to cope with weddings. But a one-on-one conversation can also be a challenge for me if it goes on too long. Also conversations where there is an expectation for constant laughter exhaust me quickly. My mouth tends to drop and I simply feel too tired to speak. Like many people who are struggling with a health challenge, the feeling that you need to perform that everything is well when in others’ company tires me out. I suppose I am searching for some ‘magic fix’ such as a vitamin supplement, certain diet or exercise that will help reduce my fatigue. Or from someone who discovered a contributing factor such as a thyroid problem or low vitamin D etc and worth getting checked out by my GP. I have been a Type 1 diabetic for over 25 years but never experienced fatigue until my stroke. I have also experienced mild anxiety following my stroke which I think contributes to my fatigue. I would greatly appreciate any advice from fellow sufferers or even to be told to just keep on managing your fatigue as best as possible. Thank you and regards to All. Philip
Hi Philip, My Stroke was three years ago and I have left sided weakness. I have the same problems regarding fatigue and find being in a place with lots of people very draining. It is not helped by the fact that I had to have hearing aids a year ago. When there are lots of people about the background noise drowns out the conversation of people immediately around me. However, trivial chatter from a few people close to me also wears me out.
i have reasonable use of my left arm and hand, but also had dropped foot. I had an FES machine for a year, but going to three exercise classes a week has meant my foot has corrected itself and I stopped using the FES machine last December. Some days my walking is good, then I get some days when it is less good. I use a stick outdoors but not indoors.
The fatigue is a bugbear and most odd. I get up at 7.30, but the fatigue starts to kick in at 11 am. I last until 1pm and then have an hour’s rest. I can then last till 11.30pm which is twice the amount of time I am alert and functioning in the morning. The advice I was given was to restrict my rest to one hour and avoid going into a deep sleep. That works for me. I also restrict myself to the tasks I undertake. If I overdo it, the hour is ineffective and I feel awful all evening.
That is my experience and I know of no magic fix. I eat a healthy diet, exercise and, I suppose, live within my limitations...which is easier said than done. Hope this helps.
Hi Penfriend61 - my stroke was 11 months ago and, although I’ve recovered fairly well, I am sometimes fatigued. After mentioning this to my GP a few months ago I was found to have a deficiency in vitamins B12 and D, both of which I’ve received treatment for.
Several people (including the practice nurse) said I’d be "bouncing around" after the B12 treatment but that definitely hasn’t happened! However, whilst it hasn’t been a "magic fix" I do feel that it has reduced my fatigue.
I'd say you should ask to be tested. Anything that can help is worth trying.
Good luck with it.
JSCAPM
Hi, i have also been having treatment for B12 deficiancy and i agrea it hasnt made me much more awake then befor i had it. I dont no if this is because of the stroke or not.
Hi Penfriend61. Stroke fatigue is, I find, one of the hardest parts of recovery and unfortunately there doesn't seem to be any magic fix. Like you, I also find crowds and noise exhausting. Even the normal everyday sounds outside the home like noises in shops, cafes - the banging of coffee making drives me mad! I was in Boots yesterday and they announced the fire alarm was going to be tested. Panic set in and I headed straight for the door out. I am 67 and 2 years post stroke in August and still need to have bed rest each day. You mention you try and push through to 4pm...personally, I think this is too long on the go. I go to bed after lunch. I purposely don't sleep as this makes things worse but I do close my eyes and shut the curtains. Everyone knows not to ring me around this time as it's my rest time and I switch the upstairs ringer off on the phone so nothing disturbs me. I started off at 45mins bedrest and now have got this down to around 20/25 mins. This sees me through to bedtime. I think it might help if you switch off completely from the world mid afternoon rather than leaving it till late afternoon. Even if you're listening to radio or calming music, your brain is still having to work to listen to it.
Exercise is also as important as rest as no doubt you already know. I went to the gym 3 times a week prior to my stroke so I feel the sluggishness quite quickly now. I have recently discovered a gym which does stroke rehabilitation treatment and also physio. My physio is working out a plan to teach me how to exercise properly with supervision step by step to gradually build up my strength and stamina again. She recommends light weight training as opposed to cardio as this is the best way of building bone/muscle strength (especially at my age) and helps to combat stroke fatigue. She has also noticed that my left shoulder (my stroke side) is slightly lower than my right shoulder and I am having physio to correct this too. I am really looking forward to getting back in the gym and losing the extra stone that I have put on since! I am particularly looking forward to going to this gym though as everyone is there for rehabilitation of some kind so I know I'm not alone and will make some new friends. Maybe there's one in your area? Lots of people on here suffer from stroke fatigue big style so they may also have some tips for you. Hope that helps.
my situation is parallel, 57 when I had the stroke. continue to experience fatigue which comes in episodes of anything from a couple of days to a couple of weeks. triggers are similar any emotional stress tends to require a payback though it is unpredictable as to what will stress me. I have been deliberately pushing the boundaries recently to try and learn where the limits are. this is in no way a heroic exercise, much more about learning to manage. physical e exertion doesn't seem to take the same toll as emotional stress. we can't avoid stress, so I suppose stress management for stroke survivors is similar to that for everyone else. I have found that I can tolerate a low level of fatigue as normal. I don't like it but can function with a bit of effort. I have made mistakes and misjudged it recently while driving. nothing terrible. I might post the story in due course but I don't want to tell it yet. I think the challenge for us is mostly mental, because fatigue can be depressing and demoralising. I am not advocating a gung ho battle through it approach, but perhaps a gentler approach of acceptance and action. pushing through fatigue is not enjoyable but not dangerous. being kind to ourselves I think includes continuing to try and do stuff we like doing whether or not it is exhausting. I never feel fresh and I do miss that, but I don't want to wait for the day I feel fine before I try and do something. I am still learning about this. I think Calm and Head space can be helpful. similarly I experience far higher levels of anxiety than I used to pre stroke so the relaxation techniques are helpful. similarly I have left sided weakness and no use of my left hand. having been a very active person and quite dextrous this is a continual source of grief and frustration. I am getting some support now but I have to re set my expectations. it could be years before I see any improvement. and it may not come at all, though I remain hopeful. I suppose I work on keeping hopeful rather than taking the militant approach of "fighting it" that's not my style, works for others but not for me. having said all that, sometimes it is just horrible and horribly frustrating, and I have no answer to that other than to suffer it, and live as well as I can. here's one:
while we have suffered a catastrophic injury we are in fact able bodied. my poor body keeps me alive. I still live and mercifully have my mind intact. so in that sense I am able bodied. learning a new way to live is a long and frustratingly slow business, but what else Am I supposed to be doing? there is no deadline to rush for. things changed for me radically employment wise and I have been Freed from those external demands at least for now, after much pain and aggravation.
the hot weather has been hard to handle.
anyway that's a bit of my story
good luck mate
Tony
I am so tired today. Dont no if its just one of those things or if it is the heat. Im only 37 and had my stroke about a yr and a half ago. I find work is really tough now with the tiredness ( i work in accounts). I feel really bad some times because im still young , i feel like its not fair on my husband and son when im so tired. Also i have physicaly recovered really well. Looking at me you would have no idea i had had a stroke so i think people think im ok when im absolutly not. Its so hard and people dont understand.
Dear Philip
"Me too". I am 43 months post stroke and the SF is still raging.
I do not retain vitamin D so I have had Vit D tablets (the megadose type) and now I have a daily across the counter vitamin D. To be blunt, I dont notice any difference.
I heard someone say that the brain needs up to 8 times the energy to work around our infarcts than it would do before stroke. That would make sense to me.
I am lucky that I can tell SF from regular sleepy tiredness. And I know when I get a stroke nap as opposed to nighttime sleep. I need the sleepy sleep (7.5hrs for me) or else the SF will really get at me.
I take a rest about an hour after I get up. I do things like shave, make bed, have breakfast then I go and rest for 20 minutes. Thta seems to get me through the day and I dont close down so quickly.
I also have learnt that if I have bad sleep on Monday then SF is bad on Tuesday and Wednesday.
If I go to bed with SF then I wake up with SF. I use a scale of severity of SF so if I have high SF when I retire I awake with high SF.
I do not go to bed during the day. I sit quietly. Maybe with my feet up. Keeping out of bed suits me. Obviously there have been times when I am so bad that I will lie on the bed otherwise I will collapse. But this is getting les and less frequent.
It is impossible to explain SF to others. Only another SS understands. Indeed, when I first came on the forum the term SF did not exist.
I think things are improving, but it is so slow and slight that I cant monitor it.
Early days I would be very bad at any sort of function etc. After months of being exasperated, I realized that my brain had forgotten how to handle an echo, so PA systems slayed me. As soon as I acknowledged this echo thing then things improved. I could ignore the PA systems for say ten minutes and my brain began to learn about echos.
I find any form of travel brings on SF. My best guess is that it is the vibrating and jolting of cars, taxis, buses or trains. I last half an hour. So boy am I parochial ! Saving a fortune on abstaining from travel and holidays.
Thank you for your post, so nice to hear from another SS a few years after the event
Colin
Exactly. Only another SS understands. I talk about stroke fatigue (not tiredness) and eventually people i see a lot begin to get a better idea. I am an accountant but I wont be doing much of what I used to do. A bit of bookkeeping but none of the stress things I used to do. And no more tax returns. My brain simply does not process the information like it used to.
Stroke doesnt take any notice of age. Being young and fit you will overall recover quicker, but had you be seriously unfit then you would not have survived. Babies have strokes. Us older people have strokes and everyone in between.
You will benefit from the progress that medical science is making. Probably too late for me, but at least I had most of my life (the going to work bit!).
I think our motto could be "you do look well..you must be better"
Never give up, we will all get further along the recovery trail
Colin
Hi Philip, SF does get better over time. I believe small improvements occur which you do not notice , but set backs are more noticeable. Keep on pushing the envelope and do not put yourself down when you become tired. Keep on challenging yourself. Good luck
Thank u colin, i feel a bit brighter today. This heat is terible though doesnt help the fatige at all. Ayisha.
Hi Chan, thanks so much for taking the time to read my post and respond. I appreciate your sound advice and words of encouragement. I have been taken a back by how many people like you have replied. It means so much more to receive a response from a fellow SS who knows about SF from their own personal experience. Thanks again and warm wishes. Philip
Hi Colin, thank you so much for taking the time to write such a comprehensive reply. There is so much in your description that I can identify with and it’s stangely comforting to know that I am not alone in my SF challenge and other SS are managing and coping with the same symptoms. I am greatly encouraged by your story and advice. I too was prescribed Vitamin D and similarly I didn’t experience any noticeable improvement to my SF. There is a possibility that it may have caused moderate constipation and my GP gave me Laxido to help matters. Of course, this may have been of relevance to me only but I thought it worth sharing. Once again, thanks for your support and encouragement. Best wishes. Philip
Hi Tony, thanks so much for taking the time to reply so comprehensively and honestly. I an overwhelmed that 6 SS, like you, should take time to read my post and respond with words of advice and encouragement. There is much in your own story that I can identify with and learn from. It helps immensely to know other SS are managing and coping with SF and I am not alone. Once again thanks for your support and encouragement. Best regards Philip
it is sometimes just good to be able to tell the story, especially to someone who has experienced stroke in a similar way. the effects are so different but it really makes a difference to know that there are people out there with similar experiences who can actually understand the issues. I have been much consoled on this site by corresponding with people who are some months or years post stroke. it can get a bit lonely and frustrating when progress is slow and nothing much seems to be happening.
good to hear from you, and hope to hear more about your story.
best wishes
Tony
Hi OnwardsandUpwards,
A huge thank you for sharing your own story so openly and honestly. There is so much I can identify with in what you wrote plus you given me food for thought, ideas to pursue and some adjustments to try. But overall I was greatly encouraged by you and others taking the time to read my story and reply. Thank you once again and I send my very best wishes. Philip
Fatigue is my greatest challenge too. I can manage one largish task a day and then I am exhausted so I am teaching myself to prioritise and that is helpful.
Thanks for your story, it has really helped me get that it's not just me and the feelings & extreme fatigue are similar to others experience. It is 1 year since my haemorragic stroke at 64. The experiences of you and others have been reassuring. Sylvia
3 years in and I am still to listen to my body and stop before I hit my wall.
Once I hit it I am neither use nor ornament and struggle to retrieve the right words from my memory banks, when will I learn.
Having a lovely 3 year old (she was 10 days old when I had a stroke) probably does not help!
Ah, Fatigue! I guess we will die with it. But I have got better with it. I can go longer on most days and don’t hit That wall as often. However it is not every day, and yes l seem to be better in the morning.
I will clean a bathroom and set down and rest for an hour or so before I start on another one. And then I will probably quit for the day. I usually make a to do to clean for a whole week( use to clean All in one day). It is the new me!