Tiredness still

About stroke Fatigue
21

My stroke was 3 years ago, yes like you I get still get dizzy, stroke was caused by triple bypass surgery and the doctors put me on warfarin which thinned blood too much and caused a bleed in my vision centre part of my brain, as regards to dizziness also light headed I find it best to rest for an hour.

I was told by a doctor at a local outpatient dept, to get out and enjoy what was left of my life as I was a walking timebomb , so as you can guess never went back there, that was 2.5 years ago, but I kept fighting it, still here, nobody knows your body better than you ......

22

Yes, morning is my best time but the dizziness (what is the cause?) is a daily feature. I had my stroke in 2017 - so glad I survived but I was shocked by my Aphasia. All the words that disappeared. I was proud of my vocabulary - but where did it go? An entire lifetime in building up words - so many people think I have just 'forgotten' words. thankfully I can still read (I know loads of people can't) but can anyone recommend a book which deal with aphasia?

23

Wake up exhausted...........that is so right, even after a good nights sleep. I dont think people can comprehend this........they are very lucky they dont. 

Its not just tired. 

24

Hi Rilla- It's been 2 1/2 years since my stroke, and I still have no energy and feel tired all the time with a dull fuzziness on the top of my head. Like you it takes me about an hour to "crank up" in the morning.  However, I am blessed that I can get out and walk about 1 1/4 miles a day.  (It has taken me all this time to build up to it, increasing a few steps each day.) My friend who had a stroke said she didn't feel like "herself" until about the 4th year.  I don't care how long it takes, just so I get there!  Keep on keeping on! Love, Jeanne

25

Jackie-Thanks for the reminder to listen to my body.  I tend to push myself, because I'm afraid if I don't walk so far or do so much, I'll backslide or won't continue to improve.  But then I remember that when I get sick with a cold or something, I don't walk or work.  I rest, so I'll get better.  I need to treat this stroke recovery the same way.  I tend to feel like I am trying to balance the two factors: resting and healing and working hard to strengthen and improve.  Any thoughts on how to best do that? Love, Jeanne

26

My stroke was in January 2019 and I am still battling with dizziness or being lightheaded and fatigue. I find that I can nod off very easily at any time of the day. I still have problems where my vision goes off but every time I see a doctor and try explain this I get sent to get my eyes checked and told there is nothing wrong with my eyes. I understand that and the more I try explain that its probably the part of the brain that is affecting it and hasnt recovered the more I get told my eyes are fine so basically just given up trying. I also battle to remember what some things are called which I used to know.

27

Jeanne. All I can suggest is to do what you are doing. Try and find something to do mentally. I've found that helpful e.g. reading, sewing. I also set myself daily tasks such as washing the kitchen floor and cleaning the dining room (today's). Hope this helps!

28

For the first time an article that has some meaningful information.  Had my stroke in Sep 2020.  Wanted to know what others were experiencing so I could tell whether mine was normal or whether I was leading up to another stroke! Has'nt resolvrd all issues but has been helpful.  Where do I get info about painful limbs,  etc?

29

I suffered my stroke in May 2018 (age 39, near the end of a ten mile run). I was fortunate not to suffer any obvious long-term consequences and was out of hospital within a week and back to trying to work my full time job within a couple of months. However, the fatigue has had a huge impact on my life. As I didn't have any obvious physical problems it took a long time to get support and the it was very hard for others to understand that I wasn't just a bit tired. There is also a bit of guilt asking for help when there are others who have suffered strokes who are having to cope with so much more.

I eventually got counselling through the NHS which was an immense help (although not easy...) and started keeping a diary. That is something I would recommend as it is real help to be able to look back and see that I had been improving even if slowly.

It's still a struggle and frustrating not to be able to do everything I could, but it has improved and life is almost back to normal. I've got a supportive wife and two daughters so I've always had to keep going for them! The lockdown has helped a bit (not having to struggle into London three or four times a week (while feeling guilty that I couldn't manage every day) is a big help), but I think it has mainly just taken time to recover.

 

30

I was managed back to work by occupational health, who took an excellent approach to gradually getting me back to 100% work.  Luckily I can do some work from home, so first it was open up computer & check it (and I) work properly.  Then do a few hours each day, then a half day in the office commuting out of rush hour.  2 half days, a full day, then 2, then 3.  2 years later, I was 3 days in office and 2 from home.  

The key for me (aside from a great boss and a considerate employer) is educating collelagues that I may look fit and healthy, there will be times (and lots of them) when I cannot do everything I need.  If it has a deadline, I will ask for help.  If not, I will do it when I can.  On the plus side (eternal optimist...) I don't leave things to the last minute.  

Also, if I am reading a book with headphones in at work, or I have my eyes closed, it is not because I've nothing to do - I am taking a break because I need to.  

Good luck to you all. 

31

'Painful limbs' could be statins - a common side-effect.  Check with your doctor, who may change dose or 'brand'

32

I had my stroke in May 2017 (just a month after retiring), so have had plenty of time and experience of 'recovery' to draw on.

So much of what I had planned - drawing and painting, carpentry, tennis, travel and travel etc - I cannot now do, but the two worst things are the aphasia (which hinders socialing - even pre-COVID) and fatigue.  The two are connected, in that as I tire everything gets worse - walking and practical activities and speech.  I refer to it as my battery running down, and I use the latter as a "litmus test".  Different things run "my battery" down faster than others.  Social interaction and "heavy thinking" tasks are worst, and I have to plan what activities I CAN do by my energy capacity, rather than time availability.  Essentially, it seems to be related to stress.  After a high stress career it seems I no longer have much capacity for it, and must avoid it.

The only suggestion I can offer is that I've noticed the significant effect of a good night's sleep.  If mine is interrupted I can have a whole useless day, and need at least a day to recover.  A mid-day nap is sometimes necessary, but doesn't fix the bigger problem for me.  I need to "sate" my "sleep thirst".  I would recommend reading Matthew Walker's book 'Why we sleep'.  I found it so illuminating that I bought half a dozen copies for my local Stroke group.

33

another thing that can cause painful limbs are statins my doctor lowered my dose because of the pains i was getting thats if you are on statins. Norma jean.

34

Hi Rilla I have mentioned on this site before about my head it feels as though there is pressure in it all the time and I also have double vision so when I walk it is very unpleasant as my eyes dont feel right and my head is peculiar. I had my stroke june 2017 so have had problems since then. I have been to several specialists so far no help. Best wishes Norma Jean.

35

Hi everyone I had my/in 2015 When I was 57. It has affected my whole left side from the top my head to the bottom of my foot they thought I might be in a wheelchair but I managed to get myself walking by hard work with my exercises which they gave me Three years in I started to complain about stiffness and tiredness all it kept telling me to do was my exercises which I have done and now the more exercises I do the worse I get when I have tried to explain this all they keep telling me to do is my exercises. Moved house to another district had to change doctors and they give me appointment to speak to a neurologist who seem to know what I was talking about she wants to see me so be interesting what the outcome will be

36

I suffered my stroke when I was 49 in May 2019. Thanks to physio and a lot of hard work I have recovered well from the physical challenges. Proud to have progressed from a Zimmer frame and walking the length of our kitchen to walking 6 miles on Saturday!
Although on hold due to Covid I have also started a phased return to work which is my new gym helping me to overcome mental challenges of focus, concentration, listening, processing data, speaking and doing all of those at the same time! Despite this progress the most significant outstanding concern for me like so many others it seems is fatigue. It is hard to express to others, you feel guilty and you can see that look in peoples eyes when you try to explain. It is more than just being tired, the feeling that you have absolutely nothing left in the tank half way through the day, you get emotional, moody, frustrated and some of your old stroke related symptoms creep back.

The key for me has being accepting it, not fighting or trying to push through it and learning to live with it and around it. I see it as your body saying "GIVE ME A BREAK, lie down and sleep so I can get on with repairing your brain".

Thanks to those that have inputed their experiences to this subject thread and inspired me to do so for the first time.

Mark

 

37

Well done Mark you're doing well.i had my stroke in March 2020 and I understand the fatigue frustration you feel,but explaining to anyone else is hard.it,s like hitting an invisible wall and at first I felt guilty and a bit of a wimp but I found that made my symptoms worse so now I just try to  make a joke of it and think to myself if anyone has a problem with it then that's their problem Haha!keep going and keep walking.?‍♂️ best wishes Bernadette.

 

38

smiley exercise exercise exercise.that seems to be the standard response.10 months after my stroke I hear the same.yours has been alot longer tho,so I hope you get somewhere with the neurologist and soon.good luck.Bernadette.

40

Hi Bernadette apparently I've been doing the wrong exercises they are different to what they was five years ago.They concentrated more on strength whereas today I think there more into stretching is that right ??‍♂️.One thing Bernadette we must not give up it's all a challenge hope you're doing well.Martin

41

When a stroke disables us, it is only the brain that is damaged. The messaging system will often tell us not to move etc

sometimes the shoulders etc will genuinely hurt because they are not moving correctly.

we have about two years before the muscles seize up.

So i dont think there is a right or wrong exercise regime. Just keep moving everything.

I found gentle yoga was great. And relaxation sessions. But thats just my way of keeping moving. I walk, ideally every day, and i do a bit of gardenning.

i call the tiredness/dizziness Stroke fatigue, SF for short. Long term its the worst bit of most strokes.

i have no magic answer. But last August it left me for a few wonderful weeks, but then came back again.

good sleep helps. I spent many months getting the right sleep pattern.  And i never fight the fatigue, as this just comes back to bite later.

research for ME sufferers is looking at fatigue and maybe this will cross over to us.

it does ease, very slowly. A diary helps a lot, as the very slow recovery is then more obvious.

i do feel for you guys that got bitten by stroke in 2020. The support pre pandemic was very poor, but this year its almost non existent.

If you havent discovered the amazing benefit of smiling, please give it a try. Your brain will react favourably. False, fake or forced will do. 
 

and dont refer to my stroke. You didnt chose it, you don't want it, so dont try to own it. 
 

best wishes to all of you out there

colin