Hello, I'm new to My Stroke Guide. I have had 2 mini strokes, 1 in 2017 and 1 earlier this year. I have been reading the discussion on fatigue and it has really helped me as I thought that it was just me being useless. Some days it hits really hard and I am good for nothing, others I can just about cope with general day to day stuff. I keep my brain active by doing cryptic crosswords and have just started knitting again for a baby charity. Some of the patterns need careful thought but I'm getting there. I find that I am sometimes a bit wobbly and have to be careful turning round. My Dr is not much use as she only likes people who have something interesting wrong with them. I wish I knew what caused the strokes as no-one seems to explain them, the heart monitor,showed up nothing, so I suppose it's just carry on and wait and see. My main bug bear is that I cannot sign my name without thinking about it! People look at you as if you are stupid. Thank-you My Stroke Guide for being there.
Hi there, I had a "shower" of strokes , 7 bleeds in total in march this year. I joined here yesterday and have found it so useful . I totally understand the days where its overwhelming. I've read that your brain overworks so much to do the littlest of tasks hence the fatigue . My stroke happened as a result of a whole in my heart ...which has always been there. It doesn't show on monitors or any checks . I'd ask your consultant to have that check . Sorry i forgot what it's called but they take pics of the walls on your heart and then can see if it's a whole . Hopefully you find the answer , take care xx
Thank-you for the advice, keep well, sending best wishes.
Hi Philip, Thank you for your advice. I will look into the sources of help you have suggested. Keep up the good work. I would definitely agree with getting out everyday if possible, it's sometimes difficult going to different places but I'm hoping that the more you do these things, the more "normal" it will become.
Have a a good day.
Sue
Realising that other people have such fatigue problems is actually a help to me - not that I wish it on any of you - but am I really going to be like this for the rest of my life. I am best in the mornings, and yes, clean the bathroom and I am done in. I am only doing the more important things, like the bathroom (I don't do the bath as I don't use it, showers for me, just the loo and basin). I should hate for anyone to visit and my loo not be pristine!
It takes hours to get up in the morning, a shower is exhausting and needs rest afterwards, same with getting dressed, eating breakfast, sorting the multitude of pills for the day. My doctor gave me a mild anti-depressant but I am not at all sure about it - he says it takes 4 weeks before I feel the effects, so how come it is knocking me out already. The first night I took one, the following day was awful, the 2nd time the following day I felt great (relatively), and the 3rd day was awful again, I slept until 11.30am and still feel like a zombie.
GP's are only General Practitioners and should be referring us to the specialists. If I could just get an appointment with the right doctor, I might get some results. I phoned for an appointment early September and was told that there was nothing until November, phone back 1st October.
I live alone and it is also hard not having any support at home, but I do my best to go out with my friends as much as possible, they have been very good to me and watch over me, so why do I feel guilty when they want to help me, and feel such a fraud - I feel as though I am taking advantage of them.
Acceptance is the most difficult thing, it's a fine line between that and giving up
I just wish some proffesional would tell me what to expect and what to do - I know it's different for all of us, but it's pot luck when we have to decide what is right for us when we know nothing about it.
Yes it isn't good I guess I am lucky as I tend to get it at teatime and through the evening so I can do stuff during the day. I did sign up for the POSITIF study so it may be they can offer something useful once it is completed?
Sandra
I have written a long reply and managed to delet it. I know this happens a lot. But I will have another go. You arent alone, I am not ignoring you and no doubt others will write without deleing ! I have to go now
Best wishes
Colin
Hi , I’ve been struggling with tiredness 5 yrs post stroke, I tried the gym but I found it boring after a while, I didn’t feel any benefit but that’s just my experience. It may be beneficial for you, you have to try it. Give it a whirl...good luck
Hi Sandra,
As frustrating as it may be suffering from this post fatigue the best thing is to take plenty of rest and not to over do it. That only seems to make it worse. I was told when I asked in the hospital why I was so tired they said that my brain had suffered a trauma and it needed lots of rest to repair itself. I found that taking the rst wheni felt tired helped me a lot. I am just over 2 years since my 2 strokes happened and even now I get tired still but it is not so bad now and a hour or so on the bed helps, plus I sometimes rest when I get home from work as I work full time. I have never been given any tablets for it ( apart from the standard anticoaguland and BP) as my GP said the Bisoprolol would make me drowsy but thats not happened.
It may help to join a stroke group local to you as I found this helped me too/ They are very good at answering any worrying questions you may have and are extreemly helpfull.
I hope you soon get it sorted and take the rest when you need it.
Sandie
Dear Sandra
I am back again, this time I wont delete the reply ! A lot of what I wrote has now been very nicely covered by Sandie so this missive will be shorter.
Stroke very often gives us waves of depression. I have been determined not to give in to depression.. I had one bout of depression many years ago and I am not going back to that.
But if the depression has sunk in then that needs to be dealt with. It will run independent of all the other stroke related stuff.
I think the two most important things are sleep and BP. Fatigue is not the same as sleep. The only real link is that you need to get your full allocation of night time sleep or else the fatigue will play you up. I can tell the difference between SF and tiredness but I get the impression many can not. I used to take stroke naps and they were marvellous. But now the SF has eased I just get tired which is quite manageable.
You most definitely do not need to be like this for the rest of your life. SF is, I believe, our brains turning us off whilst it finds new pathways around the damaged bit of brain. Medic speak its neuro plasticity. In the early months you would be better to accept this fatigue and let the brain rest. Also the brain will be overheating. It does not feel pain so it cant ask for water. We need to keep hydrated (i hate doing this) .
I also recommend you keep a stroke diary. That way you will see you are improving and you also might link certain things together and work out how to dodge the worst of the SF.
I have noticed that my improvement (still improving 45 months on) is so slight that I cant really notice. Then I have a bad day and thats big and I do notice. But overall I get better and better.
That ghastly fog does ease or in many cases it will lift completely.
From the very first days I have always gotten out of bed. I spend an hour washing/breakfast/dressing and making my bed then I sit down and rest for thirty minutes. This does set me up with a better chance of a better day.
Being on your own must be the pits. Thank goodness some of your friends stick with you. My wife goes away for four days each month. This is the time that I can get organized and I find this very helpful. Its not the same as being alone because I know she will be back in four days.
Please don’t give up. Many strokes are terminal and mine was very close to that. You and me have been chosen to live. You are therefore special and there will be purposes to your life.
GPs cant cope with us. Many do not have the training and none of them have the time. Its disgraceful that we have no real back up. Its the Cinderella illness. Stroke groups are often a huge benefit. And the stroke association can help.
Please smile a lot
Please be positive
Lots of us are here with you
Colin
Thank you all for your comments, they have helped me get my fatigue problems back into focus. I realise I am one of many feeling the same way, which in itself is reassuring. Sometimes I push myself forward through the tiredness with strength of willpower, but sometimes I sit down with a book in the garden or nod off in a chair indoors. I often feel I shouldn't give in to the tiredness as I am a restless person who prefers to be active and have something to show for my time!
Dear Judy
Our brains need to work away finding an alternative route around the damaged bit. I believe this goes on for two years or thereabouts, possibly a lot longer. By fighting the tiredness you might be delaying the repair work. I went on the basis that i would rest whenever the fatigue came down. For me that was typically 45 minutes. Sometimes a few hours, but usually 45 minutes. So all my chores were done in 45 minute bites.
I could tell when i was sleepy tired as opposed to when it was stroke ifatigue. And then i got stroke naps (gosh they were great).
it eventu ally dawned that i needed good sleep at night. I spent months and months concentrating on a nights sleep and eventually i got that nights sleep, most nights. This enabled me to start to recover.
I think my fatigue (SF) was worse than most, but then my physical recovery was very good, lucky lucky me.
The SF went on for 3 years 9 months. Unknown to me i then acquired stenosis and the tiredness from that took over. Very similar to SF. But this stenosis got worse as opposed to SF that got better.
One more year on, the stenosis has been remedied, i can actually live again. I am currently working my way around my garden/allotment making good the five years neglect. I dont have the strength nor stamina of pre stroke, but i can dig away and do so much that i missed out.
So do please plug on. Things will improve. New Judy will rise into a new world,
best wishes
Colin
I can relate to this nearly 5 years since stroke but still have issues with fatigue
Just an unlikely thought...stroke december 2015 really good physical recovery, but the SF was not so good. Then i discovered that one heart valve was failing and that gave very similar symptoms to SF. I have had the valve replaced and now i no longer have SF.
Many doctors will have arranged heart scan every three years post stroke.
colin
Has anybody questioned whether medication and particularly side effects might be the cause of fatigue ? It has been six months since my stroke (clots in cerrabelum and medulla) but I was lucky and didn't experience any paralysis - just initial balance issues and subsequently odd touch and temperature sensation issues down my right leg and arm. Otherwise recovery for the first couple of months was better than expected and I was actually feeling quite confident and getting out and about for short walks. However.. for the last three months I have experienced muscle weakness and at times a foggy head. I'm at my best first thing in the morning but after about 3 or 4 hours the fatigue kicks in. Having a rest does not seem to help much. I'm beginning to wonder about the medication - particularly the Amlodopine blood pressure tablets - as the common side effects listed on the British National Formulary website tick almost all my symptoms. The Cardiologist however is pointing a finger at the Apixaban anticoagulants and the GP is non-committal. Has anyone started on either of these medications but then been changed ?
My fatigue is much better now ,after 3 months. I don't know if is a coincidence but it seemed to get better when I changed into apixiban. I was resting about ever 1.5 to 2 hours. I now just have a rest after my lunch, a siesta, then I am ok for the rest of the day. I am sleeping more at night. I try to make sure I get at least 8 hours!
I've read that recovery is more progressive over the first three to six months and then progress slows down. This is due to the brain's neuroplasticity which does most of its healing over that time. I am nine months on, bilateral cerebellar infarct, my fatigue creeps up over the day and I need to rest, but most medical information states that stroke fatigue is not a kind of fatigue that often can be refreshed by rest or sleep. They do say, twenty minutes is a good "nap" time. If my symptoms are particularly acute one day, the fatigue is quite pronounced, on better days, I seem to have more energy despite each day being fairly similar to the other. They say fatigue gets better over time, I hope so.
Hi Janec, thanks that's helpful to know although I appreciate that not only do we have the complexity that every stroke is different but also how we all might react to medication can be different as well. Although it's frustrating when the docs seem to bite their lips and say little I guess they just have to respond very cautiously. I suspect that they are reluctant to consider tinkering with the medication from a concern that it might exacerbate rather than reduce symptoms. After six months that is a scenario I wouldn't want to contemplate. That said - at an appointment yesterday with the Neurologist she has agreed to reduce the statins but not the Apixaban or the Amlodopine. All the best.
Hi Rups. Thanks. Through trial and error I have worked out that stroke fatigue is not something easily overcome by resting. But it is all too easy to overdo things when feeling ok. I hate sleeping in the daytime and try and keep busy but have found that it's best to only do something for an hour or so and then rest for say 30 mins to de-stress. My fatigue seems to bring on a tension in my stomach and chest and then I find myself trying to catch a deeper breath but can't fulfil it. Then I guess I start getting anxious which only makes it worse. So I sit down and try and manage my breathing seems to work.
You say you had a cerebellar infarct? I had this, I now have a reduced respiratory drive which I have read can be a typical outcome of cerebellar stroke (along with swallowing issues). When I am fatigued I shallow breathe, huffier breaths. I can breathe but have to voluntarily breathe deeply. When resting I usually do a couple of deep breaths, down to my belly and up to my chest to regulate my breathing. Try not to get anxious (easier said than done), this is typical I am to believe, and we can still breathe which is great, albeit, not quite as well as we used to. I am on meds for anxiety but if I feel extra anxious, I now take a swig of dark rum, just a swig or two and find it calming. My 82 year old father recommended this to me, as when he started having panic attacks after a hip operation seven years ago, rather than accept the meds they offered him, went out and bought a bottle of rum instead. De-stressing is the operative word, because as you say, rest or sleep doesn't necessarily reprieve. I find lavender oil is a proven relaxant. When you mention overdoing things when okay, I absolutely find this extremely disheartening at the time. I sometimes feel great and think I've turned a corner and then ... whoosh, I overdo it and the symptoms hit me hard. I liken it to a dog on one of those flexible leads, freedom seems so close and then the leash locks and we get yanked back again.