Although this year sees the 25th anniversary of my stroke (hemorrhagic effecting left side) and have long been involved with the Stroke Association I have only just joined 'My Stroke Guide'.
Having had my Stroke in the mid 90's care then was very different to what it is now. The emphasis was very much on the physical recovery and I now probably have around 99% mobility. In terms of mental recovery, once I was able to talk, recognise numbers and colours I was deemed to be fit and recovered and discharged. The medical care now seems to want to disregard my past. I have always battled with post stroke fatigue, of which I am sure we are all familiar, but learnt to manage and cope with it, but found it difficult to return to a normal working life.
Last year I had an unrelated surgery and since then have suffered really bad fatigue and have not worked since August. The medical profession, namely my GP's have diagnosed all sorts of things. As much as I applaud GP's for the work they do, I don't know if my surgery is common to most, but I have seen 3 different doctors all of whom have different opinions, ranging from severe depression and anxiety to low mood. Now as one has diagnosed low mood, the DWP regard me as a shirker for not seeking work and will not pay me any benefits.
Some consider post stroke fatigue as a version of ME/CFS and I have been told that as the brain suffers severe trauma during Stroke that it is possible that my surgery has triggered my brain into thinking it was under attack again and triggered trauma again and fatigue, etc.
I do not know if there is anyone else here who has hadStroke so long ago and is either still strugling with fatigue, has had their fatigue diagnosed as something else, or has had it trigered again by an event.
At the moment my life feels very much like it did after Stroke, anti depressants only make me feel worse, CBT is not helping as I do not think it is addressing the cause.
I am so pleased we have an experienced SS on board as you will have such a wealth of knowledge.
I was bitten in December 2015.Ischemic. A newcomer compared to you !
Things have changed a lot since 2015 and I have felt that I was benefitting from things that were generally not available in previous years. My GP was as helpful as he could be, but he said that he had no training with stroke matters and he added that post stroke tiredness was treated with an aspirin and that was it. He helped me a lot before he retired in about 2017.
My diagnosis was left sided weakness, small vessel disease and post stroke tiredness.
What a misleading name "post stroke tiredness". In 2016 no one mentioned fatigue until several of us swapped info and the term SF was born.
My physical recovery was good but the cognitive stuff is poor. So in a way, I am consistent with you.
I have tried "just getting on with it" with some success but the SF is not something I can ignore.
Yes we need more substantial diagnosis and GPs are not really the right source for this. We should have dedicated after care. Including something to allow me to get a blue badge, and something which I can use to excuse myself from Jury service. I do get an attendance allowance, mainly because I have a lot of professional knowledge in this area and Age Concern kindly filled in the paperwork for me.
I believe that a lot of research is being done in the area of ME and the CFS branch of this seems to parallel SF.
Many years before stroke I had a bout of clinical depression so I know what that feels like and I can deal with the waves of depression that stroke sends in to our brains.
I can clearly tell when I have SF as opposed to being sleepy tired. Adequate sleep is essential for me. Before I can start to handle SF I have to get good sleep.
I keep a stroke diary and have recorded a daily level of SF alongside other problem areas.
Thanks Colin. That is useful. It would appear that there is a great overlap between stroke fatigue/ME/CFS, etc. It is definitely not helpful when my GP describes it as low mood. I know that when I have fatigue I am bed bound. Like today I know that I have done too much over the last few days and am paying for it now.
Unfortunately for me, as I am too long gone for stroke care I have to rely upon my GP who is not equipped to deal with my symptoms.
I convinced that the surgery has triggered the same post stroke fatigue symptoms and that what we talk of as post stroke fatigue is actually a form of ME.
Because it is not a physical disability getting anyone to accept it is an uphill battle, but one I will continue with.
I am happy to share my experiences over the years with anyone. It definitely changed my life.... I lost my marriage, my children. my home, my life and me.
Hi Gary, Only to say I had a minor surgical procedure yesterday and last night and today I have been really fatigued and my walking (with a stick) not so good. I think Colin makes a very valid point that the brain probably thinks it is under attack. We poor old survivors have much to contend with. Best wishes!
One thing I have always done is to get up each day wash, dress, breakfast, make bedetc.Then I have a thirty minute rest, seated.
I never go to bed with SF. Sit and when its traumatic lie on the settee. I dont say I am right, its just what I do.
Your case screams at the need for some after stroke care. Would you go to the local stroke group ? I am outside the area covered by the stroke association, but a voluntary group has an excellent centre. Above all, they will understand. And maybe aim you towards a possible source of assistance.
Many of us on this forum mention the "you do look well, you must be better" syndrome, but things are changing fast. It really is stupid that a brain injury seems to not count. I tell people I have brain damage but I am not sure this is the right thing to do. A number of SS either never mention stroke nor SF or indeed deny they have had a stroke. This is further confused by including TIA with full strokes.
I am horrified to hear how you lost everything. I like to think that if the stroke got you in 2021 and not 199x then maybe you would have been treated better. Maybe.
You are going to be a boon on this forum, you know so much and you write clearly. The forum used to be excellent, when those of us a few months in got huge support from those two years in. I had that fantastic support from the angels that helped me through. The forum has changed and its now too hard to use. And there arent any angels for us longer term people. We need Gary. You are going to be very helpful.
Thank you for taking the time to comment (and read !!). I think Colin makes a very valid point inline with my own thinking. The brain puts the body into fatigue to allow it to recover from trauma.
In my case I had spinal surgery and I think my brain detected the trauma and put my body into fatigue hence my severe condition since then. The problem is getting the medical profession to diagnose that. It is too easy to diagnose depression, which, in my opinion is the effect of the fatigue not the depression causing fatigue.
Thank you for your kind words. I am happy to share my experiences with anyone if they think they will help.
After my stroke my wife decided after 2 years that she could not cope with young children and me.
I had a fairly senior job in the Home Office in London. During my year off not one person came to see me from my employer. Due to financial pressure, as there was no information at the time about benefits, I returned to work on an immediate full time basis !! Unsurprisingly I struggled and my employer made it clear they didn't want me. I took the difficult decision to return to Yorkshire where I am from to be around those who would help with my recovery once my wife decided she wanted a divorce. I left my home, my wife, my career and my 3 young children ( 2-8) behind. Iwas 32 at the time of my stroke and feel that I have lost most of my adult life, working life and missed my children growing up.
I have found that the fatigue has made it difficult to start a new career successfully. People find it difficult to understand. My partner of 10 years recently split as she was of the opinion that my stroke could not be responsible for my fatigue and that I should not keep blaming it as she had read that fatigue disappears after 26 months ! That my GP diagnosed 'low mood' did not help as it is far more than that. The knock on from that is that as I am not looking for work the DWP will not pay any benefits.
As my stroke was so long ago my GP does not consider that I need post stroke care. I will carry on fighting as I believe that as an individual you know your body better than anyone.
I do not attend a Stroke group but speak with people from the Association on a regular basis as I do a lot of voluntary fundraising.
stroke is such a soft, cuddly word whereas if people started referring to it as a brain attack which is what it is then people may be more aware of what we have gone through.
Happy to share my experiences and really good to get your views and opinions.
I can't tell you how happy I am to read your post having been so long post stroke. I had mine last May and mine was as haemorrhagic stroke too and affected my right hand side. Such a shame for you to get caught by post stroke fatigue so long afterwards but I suspect you are right I just hope it goes away before too long. Sorry I have no helpful tips to offer being very much a newbie but it was truly encouraging to read your post. I haven't had much in the way of post stroke care myself but have just soldiered on in my own way, good to know it is possible.
Thank you for taking the time to read and comment. From my experience it is a myth that fatigue definitely goes away over time. It may well do, but is not guaranteed and I feel that in my case the repeat of trauma in the form of an operation sent my brain into survival mode which triggered the body into fatigue. As so little is known I am very much on my own.
I do not claim to be an expert but if you feel that my experiences will be of help then please just contact me. Above all if you do not feel OK do not let anybody convince you that you are.
What do you think of the idea that we keep quiet about a stroke ? In particular would you want to do this if you try for another employment ? My instinct is to be open and tell anyone who deals with me, but life after stroke is so hard that I wonder if I am wrong.
As the months and years tick by, I am convinced that a medical stroke unit should be available to all. full stroke survivors. Not least of all it might remove some pressure from GPs.
Today I have a low mood. The idea that the DWP should look at this and not the stroke fatigue that dominates my life is just ludicrous. I am lucky as the low mood will almost certainly be gone by midday. Possibly a French victory in PAris this afternoon could bring it back, but low mood isnt the issue.
I have a few nurses appointents over the coming weeks and I might try to see what can be done with certification.
Gary, what a terrible chain of events took away your quality of life throughout your mid life. I often think how the best years of retirement have been taken away from me, but that pales to insignificance alongside your problems. How unhelpful many have been towards you.
I think things have improved a lot since then. Patchy and nowhere near enough, but at least things are improving.
1) My SF does seem a bit worse than many and the time scale means I almost forget that I have it. But two years post stroke, on one September day, it lifted. Magic. Wonderful. Unbelievable. A few months later it lifted again for a few hours. Boy do I now know just how much affect SF has. Those brief interludes connected me back to the real world. And maybe there is a "cure" waiting to be found.
2) I wonder if bleeders have some different reaction to us clots ? It seems to me that often the bleed causes more severe damage. But maybe the recovery works differently.
3) Well there was a (3) which loss of memory has removed. I know it will not come back. Memory loss for me can be total. At least I know when I have temperary memory loss, possibly old age, as opposed to stroke loss which is total. By identifying these losses it does take the pressure off.
4) Current science has apparently now discovered how memories are "laid down" A step forward fo those with brain damage.
I have always been open with potential employers regarding my stroke. I have always tried to turn it into a positive by using it to show the drive and determination required to obtain a standard of life. Others should not underestimate what we have been through.
I am currently going through a process of trying to remove negativity in my life. The woman I loved and thought I would spend the rest of my life with failed to understand or accept the fatigue adopting the 'man up' attitude, which is not helpful so I have decided I don't want her in my life. I have found out who my true friends are, more so now than when I had my stroke.
It is easy for someone to see the physical and be there for you, but when it is hidden you then find your true friends.
I think I have learnt so much over the last year, which is why I was interested if anyone was long term post strokem as I think there is an issue about long term care. I do not think you can say someone has fully recovered. Again I have an annual physical check, but nothing for the non visable aspects.
I spent all yesterday in bed as I just could not move. I usually make sure I get up, shower and dressed every day and am trying to do an online study course to remain active as well as some fundraising for the Association.
Sorry Colin. I could talk about this all day.
Please keep in touch and feel free to ask me anything. I am very open about my past experiences.
Hi Gary, I've read your posts, and the replies, with interest. My husband is now 29 months post-stroke, and suffers from fatigue as you all do. However if he has any other health-related issue, it seems that the stroke symptoms return to plague him. I think JJM is correct when he says, maybe the brain thinks it is under attack again, and closes down in the interests of self-preservation? Just a normal head cold can set him back - very frustrating. Recently he has had to have chemotherapy, which has been a huge set back, it's as though the stroke has reared its ugly head again.
It is worrying that GPs don't seem to be aware of these issues for SSs, and I feel as though it's up to me to educate my husband's GP!! I feel as though I have a wealth of anecdotal evidence provided by the SSs on this site. Maybe at medical school, the students should spend a week of training by reading the posts on this site!
I'm so sorry for the horrendous impact the stroke had on your family life. You must be an incredibly strong person to have survived all of that. Clearly it continues to impact on your life, I hope you get a break and good things will be happening for you. Just to echo Colin's comments, it will be great to have you as a contributor to this site. I've been so lucky, to have received such support and good will from everyone on this site. I hope you will find the same.
It is unfortunate that GP's have to have knowledge of every subject. My own view is that stroke is too specialist and should be a special referal. In my case and I am sure I am not alone the hidden impact of stroke never truly disappear, you just learn how to manage and cope with the impact.
I think as I may already have said I think that post stroke fatigue is a form of ME/CFS and that the fatigue is as a result of the brain putting the body into fatigue to allow it enough energy to recover. Any trauma after that (in my case an operation) has triggered the brain to adopt that self preservation again.
My problem is getting the medical profession to understand and accept this. To be told I have low mood is a little insulting. As frustrating as I find it, it is hard to blame the GP, but I feel there is so much education required.
Your husband is very fortunate to have your support and I, and I'm sure others, do not underestimate the hard work you do. All credit to you.
Well I've got myself a smart watch so as I can monitor my sleep, my activity (steps, distance walked, etc). Also I am keeping a record of my daily activity and my fatigue levels so as I can hopefully piece together what is happening.
Interestingly I had a smart watch which I was wearing when I had my stroke. I went back and checked every reading on that day and other days near to it and nothing indicated there was a problem? I did note that the night I was in hospital I got only 2 hours of sleep but other than that .......? But I do find it useful, it tracks all my exercise and monitors my sleep so I value the information it provides.
I had 2 small aneurysms at back of head a large one at side and a stroke Iv been lucky I was on table when I had the stroke I'm a bit weaker on right side but am managing ok it's tiredness that's got me the stroke was a year ago and I'd hoped this would go away I think il just need to accept this for now and work round it know Iv been so lucky and we were in Spain when it happened thank god we had insurance hope your feeling better soon
Hi I'm luckier than most I suppose as only had two TIA but I too suffer fatigue almost daily and any amount of rest still does not solve it as far as I can see...
I had my stroke 5 years ago .i work full time and still have problems with fatigue. I was diagnosed with sleep apnea were my brain decides to switch off my breathing up to 30 times in every hour. I now wear a cpap mask for bed and found this helps even though I have some horrific nightmares and have actually fell out of bed and injured myself with the thrashing about. I now manage my working life by working 4 10 hour shifts and using Friday Saturday and Sunday as recovery days also i can have a quick power nap after work .This time management seems the only way I can manage i hope this helps someone