Stroke Fatigue - Is it really impossible to avoid?

[ManjiB]

Disclaimer:

I would like to say this post is very much a personal view and I do not wish to cause any offence but it is something I am passionate about. I really do believe we should not accept this is something that happens to stroke survivors, but rather find a solution so we can improve the quality of our lives.

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At the risk of annoying some of the membership of this forum, I feel the urge to raise this topic again. I attempted to “research” it last October but my post didn’t take off and whilst this one may also not fly, this is something that fascinates me if for no other reason than Mum who is very much a stroke survivor does not seem to suffer from stroke fatigue. I say seem, because of course she can’t verbalise and if she has ever said to me “Hey, let’s stop or I can’t do this because I feel fatigued” then I have not recognised it as such.

I will therefore ask the question, is there anyone else on here who actually does not suffer from stroke fatigue?

If so, I should be delighted to hear from you so that I can understand why you are in a minority. Whilst Mum appears to be in that minority, she can’t explain how/why and so I can’t share her secret, if indeed there is a secret. It would be so wonderful to say “Hey, if you do this, you will not feel fatigued”.

I also wonder, if since this is a condition that seems to afflict the majority if there is anyone who is saying, “Enough of this, there has to be an answer and I am going to find it, even if it is the last thing I ever do”.

This is one thing that I feel we must get to the bottom of. And for me, the starting point is what is fatigue caused by in the “non-stroke” affected body and how is it avoided/prevented and why can’t this be applied to the stroke affected body.

Being the sad deluded person that I am, I cannot accept that in the 21st century, we cannot address this.

Here is my previous attempt.

Fatigue / Post-stroke Fatigue

Greetings Membas! This post is informational and it is about fatigue. I have been reading quite a few posts about fatigue and how it is/might be different for stroke survivors. I may have missed the help that is available to stroke survivors, but in my mind, the impression I get is that this something that (all) stroke survivors experience and there is not much that can be done about it. If the last part of the previous sentence is true i.e. “**there is not much that can be done about it **” …

Here is a YouTube video that I find interesting.

Fatigue: Why Am I So Tired? And What Can I Do About It?

I believe there is a solution out there and I believe if you would like to look for it, we can do it.
It’s your choice.

Namaste|

[Bigmugoftea]

I would say I don’t suffer too badly. My energy levels are not what they were, but I don’t find the fatigue difficult as others. I do get the very occasional day where I am wiped out but I’m also living with blood cancer which also has the symptom of fatigue. However it’s certainly not daily.

[JimBob65]

If someone had mentioned fatigue before my Haemorrhage I would have thought I was tired, knackered, exhausted etc.

Stroke fatigue is definitely different. I never felt tired or sleepy, but an inability to function. I would shut down.

Fatigue in stroke survivors should never be fought as it is the brains way of healing. If you fight it, it will shut you down regardless.

Take a nap when your brain tells and it will make you feel better

[pando]

I don’t have fatigue generally - but it’s a knack to manage energy levels… if (rarely) I try & do more than I should then I might feel I have fatigue. I rest for 5 minutes then plough on.

So why does everyone else have fatigue? Mitochondrial dysfunction. Our “ponies” as I like to call them run amok after stroke - they have been cut off from our damaged brain CPU and are running about like headless chicken. This is what happens period. There are 40 quadrillion ponies in us… they run out of energy (negative voltage), then we get sick because they have packed up, chronically ill, over-run with cancer (mitochondria multiply out-of-control without programmed cell death called apoptosis) with no energy to run our bodies we keel over and die. So the trick is to power (charge with negative voltage) our ponies. Mitochondria, ponies, fatigue and post-stroke energy management is commonly known as Spoon Theory. My initial strategy was to re-mineralize (but you need a working gut to do that, and no ponies = no working gut). That’s why I had very poor bowel movement for 18 months after my stroke. But my body leached mineral reserves from my bones, while I suffered osteopenia (everyone post super serious-stroke does) and my immune system had collapsed. Then I healed my upper fermenting gut, absorption, eye, pancreas inflammation, bowel movement and more with Earth’s negative electrons by Earthing. Got some ponies up and working with magnesium ; started to heal all my soft tissue and nerves with sulphur. Got sunshine, Red light therapy (directly charging my near-dead ponies), structured water, performed a bit of alchemy (Mg to Fe) and now I’m only 25% walking zombie. But I don’t have fatigue (cos I don’t walk 10 miles… just 1 mile). My Radiologist wants me to go for 2 miles soon.. I wonder when though… he expects big things from me (his words last Saturday). Iodine for thyroid helps metabolism strength. We are 99% water by molecule count… and Exclusion Zone / structured water is the key to energizing the body. But this is fringe science… look up Gerard Pollack. My stroke was a whopper (26/42) “nobody comes back from that level” said my Doc, though my nervous system still sketchy. Shilajit can help with fatigue. Also Sarah Myhill’s Salt is fine. While I did try to kill myself for at least half a year after my stroke, I eventually decided not to. I learnt about the human body, went back to nature, started healing myself, and uncovered all sorts of secrets ‘they’ don’t tell you. In fact these days I’m passionate about my journey, and if you’d like to check me out please come and see https://www.youtube.com/@Start-Again-xyz/videos

[Bobbi]

in response @ManjiB

I don’t want to know what fatigue is. I don’t think I have experienced it.

I have of course heard others talking about it and the way it limits their activity.

I certainly can’t keep up with those who haven’t been through the experience of stroke.
I move at a much slower pace.
I put this down to my age, reduced mobility and lessened dexterity.
I’m certainly not what I was but I am able to function, given a little time, in a useful fashion.

Of course my stroke happened after retirement.

I imagine that feeling pressure to keep up with the intensity and speed of the working world must place great stress and strain upon someone experiencing the after effects of stroke.

I suppose this stress would manifest as both emotional and physical weariness.
Total wipe out, in fact.
Perhaps that is what is meant by ‘fatigue’?

Without the need to ‘keep up’ the individual can just bimble along in their own merry way making the world a happier, more joyful place and doing the best they can.
So perhaps what is needed for the avoidance of ‘fatigue’ is an environment that makes less demands and is more understanding.

Actually that sort of environment would probably be better for everyone whether post stroke or not.

===

bimble
looks like I invented a word there, I am using it to mean something similar to bumble but with a kinder, more understanding meaning.

bumble in British English

verb

1. to speak or do in a clumsy, muddled, or inefficient way

2. (intransitive) to proceed unsteadily; stumble

===

the following has nothing to do with what I am discussing and will doubtless cause confusion.

bimble box in British English

noun

a dense Australian tree, Eucalyptus populnea, with shiny green leaves, valued for its hard wood

===

anyhow,
confused or muddled,
I must
keep on keepin’ on

[Dexster]

I really value your input - plural, from all of you. I could have done with knowing about the fatigue thing while I was in hospital. I could have done with knowing how my brain was labouring to make its new pathways and regain its old skills and controls. I could have done with knowing that rest wasn’t restful, that sleep would be elusive, that I seemed to be walking through dense fog. Thank you all for putting this down in readable form - it’s a great help.

[Gnasher]

I first had I’m going to say tiredness about 6 years ago. I would be at work and around 4pm each afternoon my energy just went. I had a strong black coffee and sat down for about 15 mins and then could carry on. Went to see Dr. Bloods done and found out it was my B12 levels that were low. Injections given and after a few weeks was back to normal. Then in January 25 I was having the same issues and again after tests it was yet again my B12 level. This time given tablets and things improved. This is just tiredness not fatigue. Ie after a black coffee and 10 mins you can carry on.

Once the stroke hit me and and I came out of hospital the fatigue hit me. Once this hits me I could drink a gallon of black coffee and rest and nothing shifts it. I get in from work at 2pm and take dog for a walk and feed her. By 4pm my body is knackered. Sit down rest for an hour or so and hopefully I can then help my wife make tea or sometimes make it.

I spoke to he Dr about it to see if he could give me anything for it. Answer no your body is saying rest.

Like he says. Rest up when you need too.

[IreneFC]

@ManjiB I had suffered fatigue in the beginning but I now manage it. I don’t accept and I also do not accept a lot of what the textbook states about strokes. I have a demanding job, but if I had not had a stroke I would feel the same burnt out feeling that I get from time to time. I compare what I would be like if stroke did not exist. If people research stroke they will start and look for all the symptoms and then imagine them of just start experiencing them. This is why I do not talk about stroke to many people. This will be interesting to see who replies and what they reply. If they are honest and say if they researched symptoms and then started to have them or if they had symptoms and researched for reassurance. Same as I am not interested in what type of stroke someone had, it was a stroke. Are we going to start and put them on a one to ten scale. Sorry just passionate about this. Have a great day

[JimBob65]

I love the passion in your reply and your experiences. I’m glad you can manage your fatigue as it is not easy.

I have never looked up any of my symptoms or impairments, I live with them everyday so no point in that. We are all different. I have had words explained to me from hospital letters, but that is from diagnosis.

If a survivor is so impaired mentally and physically that they can not research their symptoms, is it possible for them to imagine experiencing symptoms? That could be a conversation on its own.

I can only speak about my own experiences and measure it against a lifelong friend who had an Ischemic stroke two years after my Subarachnoid haemorrhage. I will never work again, he returned to work within a year. So we both had a form of stroke, is one more debilitating than the other or is a stroke just a stroke?

I was told I may not survive to see the following morning, is a stroke just a stroke?

I suppose there is a scale of stroke from the one that can kill you outright to the one that will, if you are lucky, leave you with no obvious impairments.

I have been fortunate to have had excellent aftercare and only diagnosed on what I was experiencing, I couldn’t read at the time, so I could not imagine things. It took over two years to be diagnosed with dysphagia, based on my own experiences of choking on my saliva.

My wife as my carer knows more about my conditions than I do.

In 2018 I volunteered to Chest Heart and Stroke to help on a local hospital ward with the rehabilitation of patients. I was treated in another city so I had never been on that ward. The visual shock was the moment I realised I was lucky to be alive and the fine line between another scenario.

[IreneFC]

@JimBob65 When you walk into somewhere are you are a stoke survivor, but you are faced with others who have just had a stroke it is frightening. Stroke is one if the worst things that can happen to anyone as its so unpredictable. I wish you well

[Mrs5K]

I don’t think that fatigue affects every stroke survivor & it also doesn’t necessarily relate to the severity of a stroke either. Someone having a “minor” stroke can have worse fatigue than someone who had a “severe” stroke.

Fatigue is more then tiredness & feeling shattered. For me it also causes dizziness & nausea & symptoms I can’t put into words. If you try & battle on it will eventually stop you in your tracks. My fatigue kicked in as soon as I had my stroke…only I didn’t know what it was at the time.

Why it happens I don’t know. It is about managing it & that is easier said than done.

So, is it impossible to avoid? Not impossible but I don’t think we get to chose whether we have it or not.