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 guess that by recategorizing it the insurance company changes their liability? That would explain the motivation.
Chronic fatigue syndrome also called
Myalgic encephalomyelitis has a support organisation with local groups
They may be a source of greater knowledge
My guess - and it is only a guess bourn from my extensive reading of ceral boxes and other sage sources of insight is that both ME and post stroke fatigue are rooted in the same broad range of possible dysfunctions of the correct working of the brain.
I would guess that whether caused by a stroke or congenital or other reasons - and possibly causing dissimilar neurological failures the resultant impacts are the same and thus any label could be used.
Thus you should push back if the insurance company is using this as wiggle room to escape their obligations
In terms of living with it the mapping of how it manifests (effects) to what is causing maybe facilitated by detailed record keeping. The most likely avenueto yield results would actually be building a data lake from the experiences of many and then subjecting it to AI for some machine learning - the capability for this exists, but not yet the infrastructure. Forums like this suitably adapted with back end data capture will herald the possibilities - cold comfort today perhaps
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.
You have a doctor telling you that the fatigue you suffer two and a half years out from a stroke isn’t as a result of the stroke?
Do you know the basis on which they make that assertion?
It’s certainly counter my ignorant and uninformed understanding of some of the ways in which fatigue can continue to present
There’s a research project at UCL that postulates there are two different mechanisms for fatigue one fades out over months and one fades in over months - I haven’t heard the second form as described as having a defined endpoint. They are both brain chemistry related
Maybe I should go look up How it’s progressed. It’s been a year or more since I attended the presentation (online)
I found this today which explains why fatigue is such an issue post stroke.
In addition to this, your brain is working overtime, presumably like a system desperately trying to repair damaged files. Add the two together…
I’m wondering that when neuroplasticity takes place, those adjoining brain cells, they might be able to step up but never quite as good as the original damaged item. Tasks can be completed but the effort is just that much more than ever before.
“Did you know that after surviving a stroke you only have about half of the muscle strength on the affected side, but your cardiovascular strength has also been affected by roughly 50 percent? Additionally, activities of daily living, such as bathing and dressing, takes twice the amount of energy! Other factors can further compound fatigue, such as the use of prescription medications, pain, and depression.”
It’s also worth flagging that sleep apnea is much more likely post stroke. That would definitely impact on fatigue/tiredness and the suggestion is not to sleep on your back.
I would agree with that. Those activities also take me over twice the time to perform.
And need a rest between them
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.
Yes I agree. Stroke is a word like cooking. It evokes a whole class. Roasting and baking might be equivalent to hemorrhagic and ischaemic. Baking itself can be of a joint of meat or a cake.
I think I would posit fatigue is a cake because there is some flour and butter and sugar mixed in an inseparable melange. There is some manifestation that is physical, there is an element that is cognitive, there is an element that is motivational or emotional or both in baking a batch of fatigue.
I have often suggested to folk that they keep a diary of nutrition and hydration and stimulation to identify triggers and I don’t know if many have picked it up but I’ve also suggested a diary of their fatigue as in ‘can’t be arsed’ versus ‘can’t think’ vs ‘don’t have the energy to move’.
Another analogy might be the description of flavours. Our son-in-law works in the drinks industry and is much more capable of vocalising the flavours he detects in a whisky of beer or wine. I would postulate that having vocabulary actually means he tastes with more acuity.
I can never remember the distinction between Steven Pinker and Noam Chomsky. One says we can think what we have words for and the other says we have words for what we can think.
There is probably some thought and research that’s been put into how do you describe colour to somebody who’s has been blind since birth. We have the similar problem in describing fatigue for someone Who has never had a stroke - It’s even possible that our fatigue has experienced by us individually is different and composition and impact ?
6¢ of bar room philosophy
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.
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’m thankful mine is not as bad as that.
I do get the yawning. It’s not a symbol of tiredness I think it’s oxygen controlled these yawns aren’t like I had before stroke they’re three times as long completely irresistible. I always did fall asleep on the sofa I still do that in the middle of TV - I don’t like it because it means I have a harder job falling asleep when I go up to bed
I’m sorry to hear you have multiple fatigue causing challenges - again I can’t imagine
Time scale is part of the analysis. For me and I think others it isn’t I do something at 10:00 and 11:00 I’m fatigued - that’s part of it as in have a shower and then the effort to dry myself off means a sit down before I start getting dressed
Fatigue to me means more like I do something on Thursday and on Sunday I’m fatigued.
Spotting the cause and effect over those time scales particularly with a strokey brain is harder or perhaps I should say was harder
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