Post stroke fatigue

About stroke Fatigue
1

Hi all, newbie here. Last year I had 2 major pulmonary embolisms followed by a stroke. I'm 44. At the time the PEs were treated well, but the referrals when I was discharged from the stroke got lost in the system. I had weakness in my left arm, hand and leg, poor coordibation in my left hand, numb left face and fatigue. Overall it wasn't that terrible physically compared to most people in the stroke ward. I sorted my own physio after a while, and slowly built up physical strength, but still limp a bit if I'm tired, and my face feels numb when tired.

15 months later and it's the fatigue that is devastating. I'm a university lecturer, so my brain is my tool. I started a phased return to work 4 months post stroke. With hindsight it was too soon, but I had no support other than my GP. Work have been mixed about it - lots of platitudes, but no reduction in workload until just before lockdown, very little practical support, and a complete lack of understanding from some colleagues. The students are fabulous, and we just laugh when I use completely the wrong word when lecturing.

I finally managed to get referred to the local neuro rehab team in December, and had a fabulous occupational therapist, but that support was put on hold during the virus.

lockdown has been mixed for me. If I'm fatigued I can stop working and relax, or sleep if needed. But online meetings are exhausting, and the stress of working out how work will be when we get back to campus is enormous. My partner is a wonderful support, but at times everything feels overwhelming. I have no idea if I'll ever get back to how I was before, and I'm really struggling with fatigue (which my OT described as severe). I've always been career driven, and am the breadwinner at home, it feels like part of my identity has been ripped away. I'm slowly coming to terms with my hidden disability, but frustrated others can't see it, and don't listen. I know every stroke is different, but would love to hear from people who have similar experiences - to feel less alone in this, and also to hear any tips. Thank you all for reading my long winded story. Jo

2

Dear Jo

I think you could be advising the rest of us, you have such a good handle on things. It is so often the SF that is the difficult bit. Grossly underestimated and pretty much ignored. A glimmer of hope is that ME sufferers are having some proper attention and their fatigue has parallels with us.

In my opinion you returned to work far far too early. I have observed that about 9 months is a better mark. Maybe this awful virus could rescue you by allowing time for a lot more rest (?). 

General understanding of a stroke is plain awful. Why the huge number of us are treated with such poor back up is a mystery to me. A GP is not geared up to help us. They simply dont have time and we need time.

I am an FCA and no way will I be able to do tax and pension work. Luckily I am now retired. "Overwhelmed" is exactly the right way to describe my efforts to do tax work etc. My Institute recognize this and have given me lifetime free membership, but I have agreed that I will not be practising again.

I think it is still early days for you. A lot more improvement will come if you are able to give your brain time to rest and recover. You will never be able to go back to your pre stroke status. But you will get a "new me" status and that might have some attributes better than pre stroke. Part of our brain is no longer functioning, so no way will we get back to pre stroke. Our amazing brain will work around everything.

I find relaxation classes a real boost and gentle yoga even better, sometimes called seated yoga. I know there isnt much open at the moment, but maybe online yoga is around somewhere. The yoga teacher made amazing improvements for me, on lines that had never been mentioned. Grounding. Burnt nerve endings. Were things that brought me a great deal of happiness. 

Best wishes

Colin

 

3

Thank you Colin. 
things too a turn for the worse today, symptoms cane back. I've just been readmitted to the local stroke ward. It might be a funny migraine, or just a fatigue thing. But it also might be another stroke. Can't believe this happened right after I decided to reach out on the forum 

4

We'll all be waiting to hear from yo once you get home.  My husband had a few 'odd' episodes, and brief hospital re-admissions following his stroke, which gradually fizzled out as he adjusted to the meds and his brain began to settle down.  Fingers crossed for you, make sure you have plenty of rest. 

Best of luck xx

5

We do get a lot of issues during our recovery. By reaching out to the forum you now have an extra string to your bow. I do hope the hospital can help you past this difficult time. In the meantime please rest and relax. Recovery takes a long time. Best wishes

colin

6

Hi Jo 

Stroke hits us hard and it is just as hard for our families. No one, but no one, can possibly understand the physical effects of fatigue unless they have had a stroke.  I remember the early days all too well when I could have quite easily curled up on the floor in the supermarket in the middle of the aisle and just slept.  There have been many times when I have felt so exhausted I couldn't even eat a meal because I felt as if I was going to collapse if i didn't lay down.

I am retired and I have the utmost respect for stroke survivors who return to work as I couldn't imagine what that must feel like.  You will find people who don't understand because they can't 'see anything wrong with you'. Most of us have been told in the early days "but you look so well"  Just reply with 'I may look well but you can't see brain damage' That usually shuts them up.

My advice would be try not to fight your fatigue. Rest as much as you can and pace your day. You are still grieving for the person you were. We all do but that feeling will pass as time goes by.  I am almost 3 yrs post stroke and I have finally accepted the new me and the 'new me' and my stroke get along quite well now but it has been a long, hard journey.

Lockdown is gradually fading away week by week so normal hospital treatment will return and the services that help us so much such as physio and gyms. Keep checking in on here even if just to rant and rave. We are always here to listen.

7

Thank you. Back home. Not a new stroke but something that mimicked my stroke symptoms - apparently this can be due to new illness or fatigue making your brain forget the new neural pathways built during recovery. Extremely relieved

8

Thank you. Accepting the new me is really really hard. I've just learnt that fatigue can bring on a stroke mimic, which was horrifying. Thankfully only 2 nights in hospital and another MOT. Taking it VERY slowly today

9

Thank you. Back home and taking it easy, no new stroke, something (maybe the fatigue) triggered the symptoms. It's been a scary few days

10

Carry on taking it easy. Things will improve. Patience in abundance is required

Good luck

Colin

11

All good, that's a relief.  The early weeks and months following a stroke are strange times, but even so, it's always worth getting symptoms checked out.  If it doesn't feel right, it might not be right.  

Hopefully you will be reassured and be able to relax now.  Take good care xx 

12

Hi I had 3 aneurysms and a stroke while on hol in Spain right side weak tiredness is my big thing as well I just have to rest in between tasks I had mine 2 years ago and feel im about at my recovery limit now Iv been very lucky though as I was on operating table when I had my stroke

13

Hi, I have not managed a return to work as yet and I am 10 months post stroke.  The fatigue and headaches is a constant worry and challenge to me.  I can cope with my left hand side not always functioning so well.  I, too am career driven.  I have worked hard to get to where I am in my career and to be honest, I do not know what the future holds for me.  I have tried to come to terms with the 'new' me but, honestly I am sad and angry that this has happened to me.  Luckily I do have an understanding partner but I often feel guilty as I am not functioning properly and I feel I am letting everybody down.  I do not think you are alone in how you feel but I do not know the answer to how to deal with it all.  I find reading others feel same make me feel less alone and what I am going through is expected.  Sorry I could not be of much help to you. Well done on returning to work. All the best Linsey.

 

14

Hi Jo  Im new on here, but I had a stroke in January this year, I am fortunate that I only have tremors in my hands, weakness in legs, slight balance issue, but like yourself, i'm always tired.

Im retired and able to get about, still driving, but not since lockdown. I live on my own so the fatigue is making me very lazy, I just dont seem to have the get up and go anymore. I was discharged from hospital after a few days, but with no support care at all.

Fortunately I contacted The Stroke Association and they have identified  that I need NeuroPhysiopherapy. for some reason I was given normal physio, which was not really helping. But I have been made to realise its not the end of the world and as soon as the lockdown is lifted,I will resume my normal social life.  Your words have helped as I seriously thought it could not be Stroke Fatigue, no one had mentioned it before.  Wish you all the best. Dave.

15

Not sure if I have post stroke fatigue or not, but had a clot related stroke 4 years ago. Eye sight main impact of event and have now got double vision- almost corrected( but not 100%) by prism glasses.

However, I still run out of steam at about 13:00 and a restorative sleep works wonders. However I have been told,and read research, that suggests too much sleep actually encourages strokes. My afternoon rest is sometimes an hour or so long and does not impact on ability to sleep at night when I should. 

Any help would be good. As I am a very active 67 I can set my own schedule but midday naps really do break the day and I could do without them

 

charles 

16

Bleed 4 years ago age 56. Fatigue from beginning so debilitating and until a few months ago can fall asleep at the drop of a hat. Marginally improved recently but probably due to stress following being flooded out of our home in Feb and living in a static caravan on the drive at the mo. Resigned to this being the new and final incarnation of me 

17

Hello. I'm Mary and new on here too. I had a stroke in February and was told that tiredness would be an issue - that I could feel tired just sitting in a chair. Physically I am nearly back to normal as far as walking and doing everyday things is concerned but initially the fatigue was vey noticeable and I ended up feeling really poorly for a couple of weeks. I have now learned to pace myself and have found it much better. So I do one activity for a short time and then sit down and have a rest and don't worry about how long it takes to do anything. I'm 74 by the way.

18

Hi Mary...my name is Jan...I'm 13 weeks tomorrow post stroke...still got weak fingers and a weak leg but can manage to walk with a quad stick...and yes do get very tired...lits I still can't do...I'm 70....good to hear that you are nearly back to normal...gives us all hope x

19

I had my ABI in December 2013. When I was released from the Queen Elizabeth hospital in Birmingham I was sent to West Park rehabilitation centre in Wolverhampton.I had to learn how to walk, write and use a knife and fork. When I was allowed home a occupational therapist used to visit me daily. I saw Dr Alexander ( specialist in ABI rehabilitation) I told him that although I could do most things in running the home, I didn't want to do anything. I had apathy, yes I could make myself do things but I was having to force myself. He recommended that I should take modafinil. To start it was 1 a day but eventually Dr Alexander recommended that take 4 a day, split into 2 morning 2 lunch time.I found that for me the best way is to take 3 in the morning and 1 at lunchtime. This gives me enough energy to cope with all the jobs that I need to do.

See if you can have modafinil, I had a lot of problems getting it from my gp,in the end Dr Alexander had almost force the GP into giving me the medication.

I'm at a new medical practice now and I haven't had any problems.

I had to take early retirement as I knew I couldn't practice dentistry. I loved my job but there was no way I could hold a drill in a patient's mouth.

I have had to relearn so many things, I'm not going to say it's easy, in fact I found it very hard there are so many things I can't do now. I used to be a good seamstress but trying to sew......I can but it takes me ages. I used to knit but I haven't tried.

I had to have a driving test before I was allowed to drive.I can drive to my daughter ( lives in north Yorkshire) using my memory, the satnav in the car is only there if I loose myself in Malton. However I can shop for my daughter and myself, I can by memory find Asda, morrisons and the medical practice in Malton.

However each time I get into the car I'm saying to myself that I don't know how to drive, don't know how to get to my daughter's house and so on.I know that I can do it but there is part of my brain saying I can't. So I tell the part of my brain to shut up. 

I still find day to day living sometimes is a struggle, but make sure that I eat well and drink plenty of water. I do enjoy a glass or 2 of wine but life is too short.

I know that I have been very lucky, a lady neighbour is paralysed. So just that I can't sew is nothing.

Sorry about the ramble but I know that it takes a lot to recover from ABI.I don't think that people who do not know a ABI person can understand the problems. I hope this helps. I wish you all the best for the future. One of my old business partners came to see me in West Park and said "you were always stubborn, your stubborness will stand you in good stead ",he was right.

20

Hi Jo

You are definitely not alone when it comes to stroke fatigue. I have had 2 mini strokes in the last 2 years and have been very lucky with my recovery. However it is the stroke fatigue that really gets to me. 

Thankfully I am retired but still like to have a good social life and have two young dogs to keep me active with walks and play time. 
But, there are days when I simply feel drained, mentally and physically.  I was never like that before my strokes. 

My biggest frustration is when I have an SF day I struggle to get my words out, it's as though I know what to say but my brain will not work. It is embarrassing when at a shop or speaking with someone who doesn't know about my strokes. My speech also seems slower (in my opinion) so I panic in case people think I have had a few drinks and end up apologising and say I have had a stroke. 
 

Like us all, I feel as if there is little support after our strokes in explaining what to expect, what may happen, or how you may feel. I have even mentioned stroke fatigue to my consultant on my last appointment and asked if it was possible to feel this way so long after the event.  He just shrugged and basically said we all react differently!

Well I have rambled on but feel a little better for it ?.  In a nutshell, Stroke Fatigue is here to stay for some, so we have to adapt, rest and have a sleep if you need it, don't feel guilty. Don't push yourself to breaking point, stop and listen to your body. 

 
Tell your loved ones, family and friends that you suffer from SF, explain how you feel. That way they will understand and help you when required. 
 

All the best xx