I also still struggle with fatigue. I had my stroke51/2 years ago and instead of improving, some days I feel I am getting worse. Does anyone think going to the gym would help?
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I had my stroke in April this year, aged 30. I was lucky that it was a small bleed and I only had some mild left arm weakness. The element that I have struggled the most is fatigue. For the first 3 months fatigue hit me really hard, I struggled to do basic things, like walk my dog, without it making me shattered. On days where I didn't feel tired I would do too much (not that it felt like it at the time) and then the fatigue hit me really hard. Even doing simple things like meeting up and having a laugh with my friends, made me tired. It's so furstrating. It's an invisible symptom of stroke, so not everyone gets it. I think your close friends and family understand, because they know how you are normally. Others say things like "you look well" and I'm thinking "but I don't feel like my normal self"
It's only in the last month that the fatigue has started to improve; but even now it hits me at times.
I want people to know its normal for this to happen, its okay to feel furstrated by it. Don't push it too hard or the fatigue will come back at just as strong. It helps reading stories like this because you realise its others are experiencing the same thing.
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I had a stroke in December 2018. I took my time getting back to work (I listened to the consultant). I have gradually over the last 7 months improved by listening to my body, resting when needed but also getting a personal trainer to focus on strengthing my left side, getting all my cordination and balance back and improving my cardio. Physically i am better than ever before, i still have room to improve which most people wont notice but I do. Typing is my biggest frustration, my fingers don't do what i want them to do. (this reply took me 3 times longer than i would expect as i have to correct so much)
When you have a stroke your brain gets damaged and effectively recalibrates. It has to relearn things. You have to give it rest. Nuero fatigue is very common and the invisible part of recovery. No one can see it. every looks at you from a physical perspective. if you look fine you must be fine. Find an hour per day just to think about absolutely nothing. hope this helps
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It's useful to read what other people are going through - I've had no support from my GP, I should say 'any' of the GP's because since it happened 3 months ago, I have seen 5 different doctors and spoken with 3 others. There's no continuity, and each one changes my medication - it's like repair people who say the last person didn't know what they were doing, but don't worry, I'll put it right. I don't have any confidence in the GP's, I haven't had any support or information. I feel as though I have been cast adrift, no future appointments, and no information about where I go from here. I feel pretty awful, dizzy, disorientated and very, very tired. I can relate to the comments other people have made about how they feel.
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I had what was called a minor stroke in Spring of 2017 and still do not have the measure of the ongoing fatigue. I find it is difficult to plan activities as each day is different, I do believe there is an element of depression involved in the fatigue, ie when I feel so tired and drained and cannot do what I used to without thinking about it, it definitely makes me feel dispirited and down. Fatigue also causes ‘brain fog’ for me and I worry what people will think about me not being able to find the right words and acting like a zombie!
i wish there was something I could do to help myself, but in the meantime I am trying to accept how I am now and concentrate on what I can do!
thanks everyone for letting me let out my frustration
all good wishes
Pam
Hi Sandra, I have to say the after care seems to be pretty bad. One of my GPs said he wasn't a neurosurgeon so couldn't really answer my questions. I would say definitely rest when your body tells you it really helps. Good luck x
Hi sandrs, i have just read your post and i agrea. My GP's( one in perticular ) are an absolute wast of time. Im only 37 and had my strok about a yr and a half ago. I was ill for 2 weeks befor i had it. Now i no you cant stop a strok but if i was treated for the blood clot i had then this may never of happened. It makes me so angry. Ayisha. X
Post stroke fatigue hits most of us and is little known and understood. It affects us all in different ways. I am three years post stroke and my fatigue starts every day, regular as clockwork, at about 11 am when I have only been up five hours and have done very little. I last till 12.30, have an hour’s bed rest, then am okay till almost midnight.
Because fatigue is connected with the brain, I do not think going to the gym will help. Exercise clearly helps physical weaknesses, but post stroke fatigue, in my view, is something to do with how the brain copes with stroke. I go to three exercise classes a week, but they are to remedy muscle weakness and promote better balance and co-ordination.
If I know I have to forego my nap because of travel/ family commitments, I try to mentally prepare myself or find a later or earlier time to rest. I was told by one physio, the rest was the important bit and that I should try not to fall into a deep sleep. I was also told to limit the rest to one hour only.
Hope this helps.
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Dear John
Your wise words still continue to inspire.
Colin
Dear Nissan
Thats the million dollar question.
I dont think we need an answer. We do need physical fitness and we will feel better in ourselves if we are reasonably fit. So if a gym gives you that feeling of wellbeing then it has to be a good thing. I find a walk will do nicely and I am not using a gym.
"Reasonably" is the key word. I have done a 50 mile hike, cycled around Scotland/Wales etc etc and played about eight million tennis matches. But thats pre stroke. I now settle for a much reduced fitness. A mile walk. An hour mowing the grass and so on.
I am currently having good help from a very gentle yoga. A course for those of us who are partly disabled and/or otherwise not good. Its not full on yoga. I also go to relaxation classes and thats also good help.
I do not think gym will reduce your SF. Maybe put you in a better place, but you need to work out your SF. For me, I need a good nights sleep. A poor night causes all the stroke stuff to implode. Exercise might give you better sleep.
I agree with John. We need to let our brain rest when needed. My little quirk is to rest an hour after getting up.
Do let us know how your SF and exercise is going. We need your experiences. As John says, little is known about SF so we need to share our knowledge.
Colin
hi philip
like many other veterans, I still get the fatigue after 3 years post stroke. recent experiments with pushing it have shown me that the main trigger for me seems to be associated with emotional stress rather than physical activity. what counts as emotional stress is hard to say. I have recently had a tricky issue to deal with whi h required a fair bit of dealing with bureaucracy. my wife helped me but I didn't avoid the fatigue pay back. it comes in episodes for me of anything from a couple of days to a couple of weeks I am solidly in the middle of what feels like a two weeks one right now. all I can do really is suffer it. It will ease up I know that, and I also know that I can do stuff even while fatigued, even though it doesn't feel good. as with other people when fatigued, conversations and big groups are much more difficult. I need the fresh air and try to get outside as much as possible. I have significant mobility impairment so that is a challenge in itself. the stroke left me with significant left sided weakness and no function in my left arm or hand. I am sure the continuing frustration from this contributes to the fatigue. there is a vicious circle of fatigue creates a low mood whi h contributes to fatigue etc. I don't know how to break it. fresh air helps. I am fortunate in that cognitive functions seem mostly ok though when fatigued I don't feel so confident about that. however I am able to read and to my surprise seem to have some appetite for reading that does help during the fatigue episodes. sleeping doesn't clear it, but is necessary. fatigue is very difficult for others to understand and hard to explain to those who don't experience it. I have found the experience of other stroke survivors comforting. especially those several years post stroke as it is especially hard for people to understand that stroke recovery is not like healing a broken limb or recovering from flu. a brain injury doesn't heal in those ways. we are fortunate now to know that the brain does find ways to recover by creating new pathways. this was simply not known 20 or 30 years ago. I think many GPS and other health professionals have not caught up with what is known about neuroplasticity. I am hopeful that science will give us some insight into fatigue at some point. for now I suppose we have the solidarity with other survivors to remind us that we are not alone in our experience and also that the prospect of recovery is always there, but it is a very long and hard journey.
keep going
with very best wishes
Tony
Colin, you’re the one who inspired me when you pointed out that stroke is a brain injury but our muscles still work. For three years I have had what I thought was a frozen shoulder. It turns out to be weak muscles so I have been referred to physio. The physio assesses me and said nothing is paralysed or frozen and my nerves in my arm and shoulder are fine.
In short, it needs a new regime of exercise, so I have started the ones he recommended and will stick to them three times a day. Yes, I am nearly 76, but I’m not done just yet!
Hey Sandra, gutted your feeling this way. If your really struggling I would recommend going to the community stroke nurses. They are experts and would be able to sign post you in the right direction.
Hi Sandra my name is Stephen and i live in Suffolk and belong to the Lowestoft Stroke Support Group that have helped me. Have you got a support group near you that can help you.
Hi Sandra - Sorry to hear you've had a rough time with no support. After reading some of the support that others have received on here, and the lack of support I received, I have come to the sad conclusion that a lot depends on where you live and the hospital trust you come under. In my area, there is no automatic right to physio, no community stroke nurse, no physio at home, no physio in hospital other than climbing the mandatory flight of steps before you can go home, GP's who don't really have time to listen to everything that's wrong and no understanding that one medication doesn't suit all. Stroke victims are very much the poor relations. If we'd have had a heart attack, we would have received first class treatment and seen every 6 months but once you are discharged from hospital in our area, you are pretty much on your own. I would write a list of your worries and demand to see a neurologist. The waiting list in my area for this is around 3 months but the one I saw recently for an unrelated stroke problem was brilliant. It's so sad that we should have to fight for everything rather than support being offered. Hope you feel better soon. We are all here if you need to chat. x
I have had five strokes, the first in 2007 and the last January 2012. I suffer severe fatigue, and have done for the last 12 years. It drives me mad but I do not know what to do about it, so I try to livewith it but it is difficult.
Probably repeating myself, but I am getting so much benefit from a group "relaxerciser". We do the most simple and gentle yoga. All my muscles, tendons etc are out of place and the yoga helps put them in to the right place.
A massive issue, totally unknown to me, is that our "core" needs to be central and mine is about eight miles off true. Many have posted about ongoing giddy/dizzy spells and many of us are overloading our good side because of the other side weakness.
We deserve better health care. A lot better. It is daft that you and me have to search high and low to find essential rehab. GPs can not scratch the surface and do not have time to do a great deal.
I know we are elderly but thats not really an issue. I am pretty fit and I think you are also. So we can get recovery if we know what to do !
My favourite yoga is to sit like an egyptian, at which I continually sing the song ! And then my next favourite is a small glass of sparkling mineral water and a handful of peanuts in their red shells. My cramp has almost totally gone and I no longer need to drink tonic water each day.
Time for tea.
We have bread and jam. I havent had bread and jam for years.
Best wishes John
Colin
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Hi. Reading your post was like looking in the mirror. I had a stroke 2 years ago age 57. I also have no use of my left arm and hand, drop foot, I walk unaided at home but use a stick outdoors. Luckily I do not seem to struggle with fatigue. Although I do find it very draining being around lots of people and where it's quite noisy. I find it very difficult to stay focused on things and can't concentrate for long.
I'm really struggling emotionally at the moment and have been trying to find a specialist counsellor in my area, as lots of people have said that they have found counselling helpful. I am finding it very hard to accept the "new me" and would be grateful for any advice on how to achieve this and also how to find a counsellor.
It's helpful to realise that there are other people with the same issues and it's not just you. Sorry but I haven't really got any advice on dealing with fatigue, except to try and stay positive, I know it can be really difficult at times. Good luck
Regards to all. Sue
Hi Sue,
Thanks for taking the time to reply to my initial post. I recall from my first days in hospital, many of the other Stroke Survivors in my ward tell the consultant about feeling down or anxious or very emotional - where they could cry easily. This was a common experience when I subsequently went on to attend my local support groups.
I know everyone’s experience is different and unique to them. For me, I found I was able, to a degree, to accept and adapt to the new me but I have to work hard to keep focussed on what I am able to do and constantly remind myself of reasons to be thankful- not always easy. That said, I now experience anxiety and panic attacks and I worry about health issues with a tendency to catastrophize. Managing my mind battles is a daily challenge but I recognise that these are merely thoughts.
I also have become very emotional over family members or in response to someone’s caring words or acts of kindness. I cry easily. I needed to give the customary speech at both my sons’ weddings so I went to see a local CBT counsellor beforehand and this helped me a little to control my emotions on the day and afterwards generally with managing my cycle of worrying thoughts.
Each day I use the Calm App - usually once I’ve had breakfast, showered and dressed so it’s a good start to the day. I put my headset on and find those10 minutes helpful in calming my mind. I am also a person of faith and find strength and peace in my daily devotions. But to be honest the emotional side is a constant battle.
In relation to you finding a counsellor, my local Stroke Association had a person on site. My GP was also helpful in pointing me in the right direction. Pre-stroke, I was aware that some of my work colleagues used the services of Minding Your Head.
For me, having a structured daily routine and getting out of the house each day is vital. Because of my fatigue this often is limited to going to a local coffee shop each morning but this getting out perhaps to simply read a chapter of a book or browse on my iPadis Ali can manage. Like you chatting with others tends to tire me so I limit meeting times with others in both frequency and length of meeting.
I’m not sure any of my comments will be of use but please be encouraged in that how you feel is typical following a stroke, you are not on your own as there are many of us struggling with these same feelings. I would encourage you to talk with some of the support services I’ve mentioned and who helped me.
With every good wish
Philip
Hi David,
I'm so sorry to hear about your experience with fatigue following your strokes. I can only imagine how hard it must be for you.
We have information and advice about fatigue on My Stroke Guide which you may find useful, https://mystrokeguide.com/advice-and-information/physical/fatigue.
Or you can find information on our main website https://www.stroke.org.uk/effects-of-stroke/tiredness-and-fatigue.