Hi.
I’m now 18-months since a major stroke left me unable to use my right arm, leg or eye for a few days before the Thrombolysis started to work its magic and all 3 were pretty much restored to full working order (still some slight weakness). Prior to that, I had a colourful medical history of multiple cancers, kidney failure/transplant, sepsis etc….
I’m very fortunate in that in so many ways, I’ve made a good recovery, however the common issue of fatigue remains and can be almost debilitating at times. If anything, it seems to have got worse over the last few months - despite my best efforts to mitigate it (good sleep hygiene, diet, meditation, no alcohol etc).
My GP still puts this down to the impact of the stroke - plus a likely contribution/compound effect from everything that has gone before. However I also have an insurance company involved who are suggesting it could now be Chronic Fatigue Syndrome. I’m not convinced this is the case,
Does anybody have any experience of moving from a diagnosis of post stroke fatigue to CFS you could share with me please?
@IanJ i don’t have any direct experience of this but it is a question i have been asking myself recently as like you i am still struggling with fatigue 2 years after my stroke. I did have a suspected TIA at end of last year & since then my fatigue has been a lot worse again but prior to that I had thought about ME/CFS a few times.
I’ve never discussed it with my GP though so have never really explored it. I think CFS is something that is usually diagnosed when everything else has been ruled out but i have very limited knowledge of it.
Hope you find some answers soon.
One factor that I have noticed that increases my stroke fatigue is the seasonal changes. Example: I feel far more fatigued walking to my nearest shop in winter than I do in the summer.
I too am suffering from extreme fatigue 14 months after stroke. I find social events - meals out, friends visiting, talking to people are the worst offenders. As these are things I enjoy most in this strange world I now live in I carry on doing them! I eat and sleep well but often wake up still feeling tired. Alledgedly it’s my brain working hard to get back to some semblance of order but it doesn’t seem to be doing a great job! As I am frequently told “it couldn’t have been a lot worse” roughly translated as “ you could be dead!” but do think that if I could get rid of this overwhelming fatigue I would have more energy to do my exercises etc more frequently
I’ve got completely fed up with fatigue and brain fog ( my main post stroke issues) I do everything I should be doing, rest, diet, exercise, meditation, sleep, supplements but it makes little difference. I finally managed to speak to an actual GP who took bloods and found I was super anaemic. Been prescribed a course of iron tablets which I’m hoping will help.
Might be worth getting your bloods checked to make sure there is nothing underlying.
I can’t answer your question, however, I seem to have the same issue at 2.5 years post strokes. One doctor says it isn’t from stroke this late in the game, others say it is. Could be medications, could be the extreme journey that brought me here. And that is what I am curious about with you. That colorful medical history looks a little like mine…specifically Kidney failure and sepsis. I have not had a transplant but did plenty of dialysis until my kidneys began working again. And although no transplant, I do have a prostethic Aortic Valve and entire aorta, as well as having kidney, liver, and spinal repairs. Plus other issues not as similar to yours. Almost no one mentions those other conditions, and I wonder if our bodies are just worn out so it is taking its toll in exhaustion in order to get better? Many here even at years later, still have fatigue complaints. I hope you will find the answer to your question and that it is helpful to your recovery.
I would agree with that. Those activities also take me over twice the time to perform.
I didn’t think to research…OOMPH! That lightbulb often does not come up for me! I could just wait until Simon does it for me, but I am awake and on the internet, so now is as good a time as any.
@SimonInEdinburgh, the doctor who says the fatigue is not stroke related is the pulmonologist. Fatigue is a vague discription of what we have all talked about so often here. What I mean, @RedFraggle talked about during our Zoom meeting. We all describe it a bit differently, but for me it is all consuming, overwhelming heaviness, as if all of me is filled with lead, or iron. It begins with my head. I can’t think, I tremor, find it hard to move or speak, or even hold my head up. I just have to lay down.
I suspect the angina I am feeling has more to do with missed heartbeats and bouts of Afib. Another doctor thought maybe long covid, or Chronic Lyme disease. I thought I might have had pnuemonia, but no one looked for that.
The word fatigue just fits way too many illnesses to make it easy to sort out, and so does chest pain as well, thus the pulmonologist, but I haven’t met my new cardiologist yet.
I am interested in knowing the descriptive words all of you use to describe the ‘brain fog’ we all seem to have.
The irony (for me) is that it happens too frequently and often in the midst of activities that I don’t imagine I would rush to grab the diary (or take it out with me). Also I often have to spend mental energy psyching myself up for something or inversely switch my brain off (ignore it) to carry on otherwise it would beat me. I do notice sometimes that if I force myself and persist at say at walking, I can kick myself out of 2nd gear and into 3rd (to use a driving analogy) and it does improve my energy for the day. At night however, even laying down in bed I notice my breathing is harder. No pain or irregular rhythm just effortful. Maybe I’ll have some categories for Exercise, Head, Activities, Food&Drink, Breathing, Sleep and a simple emoji 
or coloured stickers to show progress, and a feeling for the day.
Just had a Keanu Reeves “Whoa dude!” reaction.
Hi @DeAnn
I have to confess I don’t like the term ‘brain fog’. I feel it is too simplistic, vague and diminishes a genuine problem but I haven’t thought of an alternative so grumpily I’ll stick with it 
.
Perimenopause (P) gives rise to this too which muddies the water for me. So to my theory ha! I think I see the distinction where in “P” the brain stops kind of abruptly mid flow and you can’t remember what you were about to say / do next. So you would look like a total idiot in a meeting at work 
.
Whereas with Stroke I feel there is an MIB (Men In Black) moment - a daze, doze, where am I?, the idea or words simply float away in seconds. They may come back later. It is subtle - not as visible as a dementia sufferer. It happened to you yesterday but amazingly you grabbed that thought right back!
I find I just can’t hold things in my head. I have to write something down if it’s that important. I haven’t got a bad brain it’s just not as fast as it was before. I’d be a rubbish lawyer 
. That might only be my experience of course.
I think we probably all experience fatigue differently. I get the heavy head, fuzzy & woozy, dizziness & nausea, struggle to concentrate on anything. I also find i can’t stop yawning, need to just sit very quietly with my eyes shut. I lack energy, can’t keep my eyes open, struggle to move around & even find i don’t have the energy to do things like lift my cutlery to eat my food. It also makes me very emotional…but I suspect that might be because i get up of feeling rubbish.
I may get some or all of those.
I have multiple conditions which have fatigue as a symptom so each / all of them may be responsible.
I think i’m just being greedy it does present its challenges though.
I have to say i rarely have trouble falling asleep at night even if I nap but that has only been the case dince my stroke. Falling asleep in the evening has become more common for me these days…work is exhausting.
Like you my fatigue often hits a couple of days after tye activity that caused it. Makes it harder to identify the cause sometimes. At the moment it is constant…i’m blaming my possible TIA before Christmas 
Certainly in the early stages of stroke recovery, many of us are just not interested in food or can’t eat, struggle eating. And that is bad if we are not taking in enough of the B vitamins to feed our brain as well as aiding its repair and recovery.
So its really quite easy for stroke survivors to become anaemic if you are not eating enough. And anaemia can cause tiredness, weakness as well as all its other symptoms and it can kill you if left untreated.
I was around 6mths post stroke when my bloods were checked and found I was low in folic acid (B9). After being on that a couple weeks the fatigue and brain fog started lifting. So I sincerely hope you get to enjoy a similar result 
Thank you, I hope so.
‘One doctor says it isn’t from stroke this late in the game’
I still have awful fatigue after 9 months. My GP doesn’t seem to accept it’s post stroke fatigue and seems intent on saying it’s now chronic fatigue syndrome/ ME or even Fibromyalgia, which is just not right at all.
I just don’t think GPs have the expertise when it comes to the finer details of post stroke problems.
I also have friends whose husbands had strokes and they don’t have this awful fatigue. Everyone is different for sure.
It’s amazing how drs can vary so much. I sawmy GP on Thursday & she said some people suffer with long term fatigue post stroke yet like you I’ve also been told that this far on it must be something else causing it. All I know is that I never had it pre stroke & post stroke it has never gone away. My bloods show no deficiencies so logical conclusion for me & my GP is post stroke fatigue.
I hope your fatigue settles soon.