Hi I had a stroke 31/10/18 just under 6 mth ago, some right side weakness it was in my thalamus area of my brain. I have come through horrible times of pains and fear and odd sensations, yet I have lost weight, gained physical fitness and reduced blood sugar levels from prediabetic to normal. Hurray I have conquered much, I get so many compliments on how well I have done and am looking all very lovely BUT as I try and do more than just the basics of my walking, keep fit and swimming, ie food shopping, planning, socialising etc I am realising how hard a full life really is. I'm lucky that at 54 I have been able to take early retiremet and so has my husband so he is at home to help and if truth be known do the lion share of things while I have just focussed on me. This past month as Spring has sprung we have had a few days away, had relatives to stay and had more vistors. I am crumbling day on day. I feel I am caving in from the head down I feel pressure as though I'm trying to push my head out of a closed lid, odd but thats the only way I can describe it. Having tried to take a friend to our caravan 2 hours away for a few days I felt exhausted to the point of collapse in fact we had to share the driving as my stroke leg and arm returned to their numb state after an hours driving (and nattering as we are both chatterboxes, very hard). Im thinking this is the fatigue so many have mentioned? I cannot get over to others that even sitting and chatting is beyond me at present, I cannot recharge, all I say to my husband is Im done for. I cant explain to them, all they see is a new slimmer outwardly fitter me and I am struggling massively on the inside. I can walk and swim and keep fit each day as always and I am stronger walking up hills and further and I love it. It is cognative stuff, multi tasking and social interaction that is making me ill. Is this stoke fatigue? What can I do? Signed a grateful Im alive and have ability but sad I have this fatigue person. CAS
Dear Cas
When I started on this forum, no one mentioned stroke fatigue. We talked about how tired we got. One or two of us mentioned our formal diagnosis included "post stroke tiredness" and that the definition in non-medical terms was a lot more than "tired".
We then talked about fatigue. But again no one really identified what was going on. So we then progressed to "stroke fatigue" or "SF". I was very much involved with the term SF and it is purely day to day language. I have no medical training at all.
A friends daughter has a bad case of ME. Not long ago she would have been dismissed as lazy. Man flu for women etc. But her symptoms are very much the same as the SF that I suffer. We dont know much about the brain. Research seems to be catching up, but its in its infancy. Compare with the research and effort over many years put in to cancer. Stroke is the cinderella.
I will stir in more to the mix, as I can actually tell when I am tired (sleepy tired) as opposed to when I have SF. In the first two to three years I could also identify when I was sleepy sleeping as opposed to having stroke naps.
This is all very hard and awkward. My life is dominated by SF. My life is affected but not dominated with the physical disability.
Your excellent description of SF is unmistakable.
Crumbling under routine pressure, virtual collapse and so on. Does your concentration also disappear after a while ?
Many of us have big time SF from the outset and that reduces as the months tick by. I am not clear if thats the case with you. Was it a lot worse in the months up to the new year ? Or has the fatigue worsened this year, I wonder.
If it helps, my SF has overall eased gradually. Things do improve.
Dealing with non SS is a nightmare. "You look well". I used to tell them they couldnt see inside my head. And of course its much more than that,as I suspect you have already discovered.
When I spoke with people who actually grasped the nature of SF, they repeatedly told me I was doing too much. I think I was far less active than you are. I would urge you to think about resting more, and I mean less trips, fewer visitors etc etc.
You have already changed your life by retiring, which is a massive step. And your husband has picked up a lot of the slack.
Do keep all your joints and muscles moving. SF plagued me so much that I made the decision to concentrate on cognitive recovery and ignore the physical stuff. That was a big mistake. I now have a lot of muscle and joint issues, as though I have aged 30 years in twelve months.
We really need to edge our whole recovery forward bit by bit. No one else will have a clue what you are going through (maybe a medic, SS or husband might get a clue, but no one else).
Like it or not, we have to accept that we are not the same as before. It was old Cas and old Colin and now its new Cas and new Colin.
Please try to moderate what you do. I am stupid and "overdid" stuff. Three episodes of blues and twos and several times when I did indeed collapse through exhaustion. Be better than me. Recover gradually. Become that new person hidden within your new brain. I think medical research is too far behind to help us, but you never know, they might ride in with some help.
Sorry this is such a rabbit rabbit, but your post rang so true and took me back to the early days post stroke.
Colin
look at headway. org
they have som helpful resources on fatigue following brain injury.
many symptoms are similar to chronic fatigue syndrome I find it comes in episodes that can last for several days even up to two weeks. n periods of heavy fatigue it is hard to rest and even to sleep. I have heard it referred to as unrest. which is about right. I am physically quite affected but the cognitive load of social contact can trigger episodes.stres generally does for me so I am happy not to be working now. I lost my job after an unpleasant period of performance review.a long story I posted previously.
anyway check out the headway material. stroke association hasn't yet caught up, but does have a useful leaflet on it somewhere. I expect you will be able to find on this site. the helpful thing about the forum has been to hear from people like Colin who have experienced it over a long period.. it is a common experience and not well understood and difficult to communicate to those who don't experience it.
Tony
Hi Cas. As my friends on this site have said, stroke fatigue is known about, but hits us all in different ways. Mine hit on my first day out of hospital. It has impacted on me ever since (3 years). It has decreased over time, but is a daily occurrence. Mine always starts four and a half hours after I get up at 8am and requires an hour’s rest in bed. After an hour I can get up and am then good for another 9 hours before bed. If I do not rest when my brain tells me to, my sense of stupor gets worse and I am simply awake but not present as it were.
I find it helps to limit tasks to one at a time and to limit time in company and away from home. I have to limit tasks to one at a time because of the focus required to complete them. Also, if I am walking, that has to be the centre of my attention. It is probably due to the damaged brain’s need for less stimulus and activity. However, I am no scientist and am not medically trained.
I go to exercise classes three times a week and these have helped my physical recovery enormously, but my reading is fairly limited. My iPad is a lifesaver, but my eyes get affected if I overuse it. I also find trivial conversations frustrating and hard both to follow and contribute too.
As Colin says, it is worse in many ways if we start to ‘look well’ again. Not only is more expected of us, but you also get a sense of being treated as a ‘malingerer’. I used to volunteer a lot for my faith group. I stopped doing my jobs as soon as I had my stroke. To my incredulity they kept my jobs ‘open’ fir me. This meant post continued to drop through my letter box to be dealt with and had to be passed on. In the end I had to make it known in no uncertain terms that not only could I not do these jobs, but keeping them ‘open’ was making me very stressed. They still cannot understand why I do not go to formal meetings and study days. Many non survivors simply do not understand us.
So, to sum up...the things that are beyond you are also beyond me. Exercise I can deal with, domestic chores I can deal with, but not social chit chat, multiple conversations going on at once or multitasking. I now live with my limitations. Best wishes.
Thankyou for that it makes me feel better to know that you too have similar problems, although I dont wish this upon anyone if you know what I mean. Guess I am just learning my limitations then have to try to work a path through life armed with that knowledge. Good luck to you.
Thanks, I'll have a look at that, this is the worst episode I have had it has lifted today but has lasted about a week and as you mention whenat its worst I felt to ill to be able to rest/sleep. I have read the stroke org. leaflet on fartigue but it seemed only just to touch the surface of the problem. Take care.
Thanks Colin I have gleaned much from you on this site and feel it can only be post stroke fatigue. I am at last, after a horrible week, starting to feel better today. It has seemed to become more of a problem to me now over 5 mth have passed and others think I have healed and I also feel I should be doing more "life" things. I am down to my target weight although would be better if I lost a further 1/2 stone so that drives me to continue my fitness regime but I shall try to pace and rest inbetween activity as you say. I also will spread out the social and nice bits of life better. Take care and I am hopeful thanks to your reply that it will improve like so many things to date.
This has helped me.
https://jnnp.bmj.com/content/90/5/507
A randomised double-blind placebo-controlled feasibility trial of flavonoid-rich cocoa for fatigue in people with relapsing and remitting multiple sclerosis | Journal of Neurology, Neurosurgery & Psychiatry - jnnp.bmj.com
jnnp.bmj.com
The impact of flavonoids on fatigue has not been investigated in relapsing and remitting multiple sclerosis (RRMS). Objective To determine the feasibility and estimate the potential effect of flavonoid-rich cocoa on fatigue and fatigability in RRMS. Methods A randomised double-blind placebo-controlled feasibility study in people recently diagnosed with RRMS and fatigue, throughout the Thames ...
https://nutritionj.biomedcentral.com/articles/10.1186/1475-2891-9-55
High cocoa polyphenol rich chocolate may reduce the burden of the symptoms in chronic fatigue syndrome - Nutrition Journal | Home page
nutritionj.biomedcentral.com
Chocolate is rich in flavonoids that have been shown to be of benefit in disparate conditions including cardiovascular disease and cancer. The effect of polyphenol rich chocolate in subjects with chronic fatigue syndrome (CFS) has not been studied previously. We conducted a double blinded, randomised, clinical pilot crossover study comparing high cocoa liquor/polyphenol rich chocolate (HCL/PR ...
https://consumer.healthday.com/cognitive-health-information-26/multiple-sclerosis-news-486/hot-cocoa-may-ease-the-fatigue-of-ms-743412.html
This may also be of interest if like me you have type 2 diabetes .
https://www.ncbi.nlm.nih.gov/pubmed/20968113
good luck and I suppose the best I can say is that what you are experiencing is not at all unusual for brain injury survivors. Yesterday I also was too tired to rest. I do find some days I can push through the haze and brain fog and get some basic things done. like getting washed and dressed. but then have a big rest afterwards. my family now understand the unpredictable nature of it. sometimes the trigger can be identified, often not and itthe fog just descends, it tends to creep up on me so I might feel hazy tired for a few days before it gets to the unrestful stage. a little trick I play is to ask whether I have enough energy to just start whatever it is I need to do. that's all, just make a start. I borrowed that one from a book by Jill Bolte Taylor a neurologist who had a haemorrhagic stroke and wrote about it "my stroke of insight" you will also find her Ted talk online. worth hearing.
thanks for posting
you are not alone in your experience. it is hard to handle but really helpful to talk about. I have been fortunate in that my wife and family understand and are patient with it. not so lucky with my former employer with whom I have now parted company. it can be managed even if it doesn't go away entirely.
there will be brighter days.
best wishes
Tony
Look up 'The Spoon theory'. Written by someone with lupus, but a brilliant explanation of the effect of chronic fatigue.Useful to explain to friends and family how you feel.
Dear Cas
Your previous post described SF exactly, so I dont think there is any doubt. On the previous version of this forum, I asked "what does the SF feel like for you" and I got about six or so replies. They said treacle, glue, mist, velvet curtain, head in a mask and my favourite was "head in the washing machine". So its a pretty inexact scienc at the moment.
I think it is my brain slowing me down because it needs to channel its duties through a restricted pathway. Hold up at the M25 etc.
However, I am not the best person to speak because my SF is bad and hasnt stopped. Except for two separate days when it just cleared without any logical reason. And then came back pretty quick.
Mine also seemed to change at about 18 months. First 18 months it came on then went off, for me every two hours. And I had to rest/sleep or I woud fall down. Then at 18 months it was less severe but its with me all day every day. Stronger for a while then easier for a while. I am wracked with concern that I have done something wrong and thats why my recovery is so poor.
Other peoples perception is so far out of line. If we had had a leg amputated then we would get lots of assistance and quite a lot of understanding. And no one would even think of saying you must be better by now. No, leg is missing and its not going to grow back again.
But we have a bit of our brain "amputated". Very little understanding, very little help and plenty who suggest we must be better now. Its not ging to regrow.
You are going well with your recovery. I dont know if a "thalmus" stroke has particular differences. but you have done so well with your weight. You keep moving, you now grasp you need a lot of rest and you are trying to accept what has happened to your brain.
One of my penpals is four years post stroke and is your age. I "followed"her and her advice for 18 months and I seemed to be edging better. But since then my recovery is pants, but my penpal has got stronger and stronger. Yes there were set backs and yes, after two years, patience does run out. But all the subsidiary problems do eventually get resolved and for my penpal she is creating a good life for herself. I am distraught that I no longer keep up with her level of recovery, but I do benefit because she will tell me what its really like day to day.
SF was severe for me from day one, or about day one. It eased slowly over the first 18 months. So you are certainly different in having had very little for 5 months and now its started up. You havent by any chance simply noticed the SF that was lurking and not to the fore ? From what you have written I dont think this is the case, but it is odd.
I am sure you know that the stroke left a bit of your brain damaged. This would have been a central core completely destroyed then an area around the worst damage, which may have actually repaired itself. The brain will also have been busy working around the damaged areas. In very general terms, this process lasts about two years and is then comparitively settled. Recovery can be had, especially physical stuff, at any time after stroke. No time limit. But its quicker at the earliest stages, slower after a couple of years.
It does seem that those who are positive get the best recoveries. I have skipped over depression as that has hopefully left you alone.
It will be interesting for you to have a couple of weeks with lots of rest then you can guess at the effects.
Time to go and paint the shed door that I have spent weeks and weeks repairing. Everything is so slow I could scream.
best wishes
Colin
Oh no sounds horrid for you but we walk an unknown individual unchartered path, tomorrow might be better I keep my fingers crossed for us all. Your response means much to me. I think I perhaps I have had it from day one but like many of us after a day of progress we want to run not walk before we are ready and so its taking its toll. I'm trying to pace aswell as educating those around me of my limitations. I'm off for a trip on The North Yorkshire Moors Railway tomorrow with a group of friends and ofcourse my long suffering husband for afternoon tea and a trip to Whitby. I planned it when I felt I could run and sadly have to tell them I wont be chatting in car on way as I have to pace myself but yet still hope to have a fun day. We must celebrate that we are here and are not worse but it is a strange thing we have suffered. Good luck with the shed!
Thanks, will do glad of anything that will help explain it to others.
Lovely. A heartbeat day. I have stayed in Goathland. Went "touring" and found this pub/hotel (?Black Bull?) on the green and we didnt tour any further. Stayed the week there. The NYM railway wasnt open then. And Heartbeat hadnt been filmed at that time. A lovely area of England.
One way I cope with fatigue is that I get up, breakfast, wash, shave, make bed and then I sit quitely for a half hour nap. Failed to do that this morning so I was finished by 2pm, zero energy left.
Generally I only get 45 minutes then I have to take a proper break. I get so little done in a day. The shed door and frame is taking months whereas pre stroke I would have had it done in a few days.
Travel of any kind results in extreme fatigue. I can drive for half an hour but have to remeber to get home or to somewhere I can guarantee a nap.
Keep smiling.
Colin
Hi, Thanks for response sorry Im late reading it just gone onto forum again as having another bad run in with what I presume to be stroke fatigue. Ill look that talk u on line. Thanks and best of luck.
yes do, it is interesting. fatigue is a real challenge. likewise I am in the pit of a 2 week spell. I thought it was lifting a couple of days ago but seems to be back. it just ramps up the frustration as I am sure you know. I have identified some triggers but often it just emerges with no apparent cause. there's also some helpful material from the brain injury support organisation called Headway. they've just done a survey on fatigue, results only confirm that it is an almost universal experience for people with acquired brain injury
best wishes
Tony