I’m 39 and had a stroke 5 days ago, I didn’t even know it was a stroke until confirmed by the hospital. I have weakness in my left leg and my left arm feels non existent. My speech has improved slightly over the past few days.
Due to Corona I only stayed in hospital for 2 days and have received no support apart from 1 phone call from a physio since being discharged.
I have been given a physio programme to work on at home but just feel hopeless and can’t see things getting any better when all I want to do is go back to work. Friends and family have been very supportive but it’s knocked me for six and can’t see any light at the end of the tunnel.
I’m finding it incredibly difficult to get motivated to do physio particularly the arm exercises as nothing seems to be happening
what strategies have people used to get through these tough times?
Terri, I am four years post stroke, but can understand the emotions you are going through. These will feel all the worse because the current Coronavirus crisis means the help you need is currently not there.
Recovery after stroke can seem slow, but I believe repetitive exercise absolutely necessary even though it is tedious. When I left hospital, I could walk on a frame, but my weak arm jerked a lot and the fingers on my left hand lacked sensitivity. Four years on I walk reasonable, using a stick outdoors but no stick indoors. My hand has stabilised more , to the degree that I can cook, bake and change a bed. However, tasks take longer now and the weak arm and leg still have their good days and bad days.
Until lockdown I was going to three exercise classes a week, but these were cancelled. I now make do with short exercise classes in the kitchen and a daily walk. I have found that improvement is difficult to notice, but other people tend to see it clearly. Yes, the exercises are tedious but improvement will come. Along the way there will be accidents, broken crockery and low moods, but you can get through all this. My best wishes to you.
Agree with Julie. Please use this site, if you require professional assistance, either online or via the telephone, too? We are always here 4U, if you require? All the best Carole x
Hi Terri, these are scary times, but things will get better and you will improve, I am almost 3 years post stroke and still notice some things improving and others not. You do have to listen to your body, and only do what you can manage. Try putting some music on when you do your exercises, it really is a motivator. I found myself at 62yrs actually doing exercises with Mr Motorvator on the TV. You are probably to young to remember him, but with the music going I was able to move along to the music if not able to do the actual exercises.
One thing you must not do is rush back to work too soon, you have had a stroke and it will take time to adjust. When you do feel up to it get HR involved to help, maybe being able to arrange a phased return, and small adjustments that may help you. Nothing would do more harm than rushing back too soon and then going off again. I was able to return to my job as a teaching assistant after a full year off, but could only manage two days a week as the fatigue was alful. I am older than you but do listen to you body, if its says your tired then rest. Good luck, keep us posted, and feel free to rant any time. Wendy
Thanks for your words of encouragement. Another couple of things I’m finding is 1. Taste- everything seems to taste extra strong and not very nice aswell as having constant bad taste in my mouth and 2. Ringing in the left ear- it’s pretty much constant but does disappear occasionally
Are these normal after stroke?
Its so frustrating ??? but also I’m petrified it’s gonna happen again
Hi Terri, I think what you are experiencing can happen quite frequently. I had a stroke 2 years ago and have had ringing in my left ear since then, some days more noticeable than others. I wear a hearing aid now prescribed for me which plays the noise of the sea which masks the high pitched noise I normally have. I can also turn it down really low so that I can bearly hear the noise which works well for me.
I also have a taste issue which I think lots of us get. I find some foods, especially spiced and even if they are only mildly spiced, taste a bit metallic. I think it's just another result of the stroke,unfortunately I haven't found anything which helps with this, maybe try cutting back on spicy food for now.
You will be on medication now which should prevent you having another stroke so I would try to put that to the back of your mind and concentrate on your exercises but don't overdo things as it's still early days for you. I wouldn't return to work unless you have a phased return, you may find you're more tired when you get back and at the moment it's much too soon to think about going back especially with the virus. Your doctor will give you a sick note I'm sure.
Others on here who are working will be able to advise you about any work issues you may have, I am retired now so I'm not up to date with sickness pay etc.
Hope this helps, we're always here to help where we can.
I had my stroke a few weeks before you but have also been affected by the fact that the community team are not physically visiting and there was quite a gap between leaving hospital and speaking to anybody. I continued to do some of the exercises I was shown in the ward but definitely needed more. There is quite a bit online (YouTube etc) but I wasn't sure whether they were right for me or not.
But my physio arranged a video consultation with which was surprisingly good and she followed up by emailing me a suggested exercise programme which I am now working on. She is going to call again in a week to check how I am doing. Perhaps you could ring and ask for another conversation or video consultation?
The exercises do seem impossible to start with and progress day to day can seem slow or non existent. But when I look back a week, 2 or 3 I can see really significant improvements. So stick at it - all I have heard is that the work you do in the early weeks and months are really important in making a good recovery.
And I agree about using music - I can always do more to music - try to dance or move arms in time to music. You will look daft but you might be surprised at what you can do!
Hi Terri, welcome to the forum, I am 3 years post stroke (aged 59) and still struggle with some of the issues you mention. Taste: my taste buds have changed completely and things I loved before (Indian food) I no longer like. I also struggle with the texture of some food (bread, rolls etc). I have also lost my appetite and have to force myself to eat, whereas before I was always hungry and could eat all day. Smell : I have no sense of smell, which is sometimes useful but annoying at times. Body Temperature: I feel the cold much more than I used to, even when everyone else is sweating hot, I feel cold, which then causes my affected side (left) to tighten up, making movement more difficult.
I would strongly agree with the comment about movement to music. I find this very helpful. I loved to dance before my stroke and I have set up a Spotify playlist of my favourite dance tunes and love to listen to it when I'm on my own, it helps to get me motivated.
It is important to do whatever works for you and you will find plenty of advice and tips on here. Good luck and stay safe.
Hello,does anyone have any advice or tips for me in regard to coping with neuropathic pain in my left leg and foot.i am 2yrs post stroke and this has been a problem since last October.My doctor has prescribed gabapentin but it is not really helping much.She says that is all she can do.So I would appreciate any feedback.Shar23.
Hearing was very upset by the stroke. It has eased enormously. I did have to actually tell myself how to listen to an echo, such as a PA system, then my brain slowly took that on board.
After a time, if things dont right themselves, then afraid to say its the GP needed to help you. A word of advice..ask the GP to help you with eg hearing, do not try to get the GP to deal with all the oddities of the stroke.
My taste sense went berserk. I have just gotten used to it. When a lovely steak tastes foul it is a shame, then next time around I save the cost of steak by having, say sausages. Or better still a salad.
My appetite also changed the moment I came around from stroke. I was a right faddy eater pre stroke, now my appetite is ideal. I loved the hospital food. And when home I enjoyed most food much more. So its not all bad news. I carefully monitor my weight to ensure I am not over (or under) eating.
Hello Shar23 - I suffer nerve pain and numbness in my leg and I take amitriptyline in 10mg dose and it has had really good results. I was also given gabapentin by my GP which didn't help much and although I was only on it for a month, the side effects of coming off it were horrid. After seeing the neurologist, she changed it to amitriptyline. She said it would take about 6 weeks to kick in - mine took 8 weeks but I can now live a fairly normal life. I am only troubled with it if I sit for long periods which I do try and avoid. But, recently I had to fly to Canada (an emergency trip) which involved an 8 hr flight there and back. I survived! Prior to taking the tablets I could only sit down for around 15 mins before my leg and foot went numb.
Most people take amitriptyline for depression/anxiety but in a baby dose it was found to really help sufferers of nerve pain and numbness. 10mg is the least dosage and it isn't addictive (unlike gabapentin which can be) It is also safe to take with the usual stroke tablets eg BP medication, statins and aspirin.
An alternative to medication might be manipulation by a physio (I guess impossible during the corona disaster) or in my case a yoga teacher. She suggested the nerve endings had been burnt and that getting my joints and muscles back in their right place, then doing minimal exercises, would relieve them. I was in moderate pain and not severe pain, but this yoga treatment worked wonders. She was teaching me gentle yoga, sometimes called seated yoga, no fancy exercises but just getting my body sorted.
I had a very good recovery of mobility after stroke. I was so pleased to be able to walk, lift things etc that I just enjoyed the movement rather than looking at perfection. The yoga was three years post stroke.
Colin, I was really fussy about food before the stroke. Not now! Likewise, enjoyed hospital food, before I was fed intravenously for a while! Chocolste mousses etc for a few months, then regular meals plus weekend takeaways later! God bless those nurses, then as now!
Hi Colin, Thank you for responding to my post.I think that what you suggested to me was very interesting and it is certainly something that I will be looking into.I have quite severe pain at times so I am willing to try anything to get relief.Many thanks again and the best of wishes to you.Shar23.
Hello onwards and upwards,It sounds like you had very similar problems to me .I also get burning in my foot too.I already take 10mg daily for post stroke shoulder pain as well as the gabapentin.My doctor has never mentioned me seeing a neurologist so perhaps that is something I could mention to her if things don't improve.Im getting desperate because like you mentioned in your post,sitting too long is a problem but also I can't stand too long because of the burning sensation in my foot.I have to lie down to get some (not total) relief.Many thanks for responding to my post as it has given me another avenue to explore.I am pleased that you finally found some relief from this horrible condition.Best wishes to you from What 23
Sometimes I feel that doctors don't take nerve problems seriously. I guess it's the same old problem because they can't physically see something is wrong, they either fob you off or think it's all in your head especially when you've had a stroke. It took a while for me to persuade my GP to refer me but when he finally did, I got an appointment within a few weeks. The neurologist was brilliant and gave me every test in the book for nerve damage. Mine was not in my stroke leg but in my other leg and is caused by a 'mobile' disc protusion in my lower back so when I sit down it pops out and irritates my sciatic nerve causing my leg and foot to go numb. When I stand up, it pops back in again so I don't have any trouble walking, just sitting. The tablets have stopped that which is heaven. Unfortunately, I'm not considered in enough pain or discomfort to warrant surgery on the NHS.
Another option would be to ask your GP for an MRI scan to see if anything shows up on there that's causing it. I had two - one on my lower back and a brain scan as the neurologist wanted to rule out another stroke, something the GP never even thought about!
The sun is hot and the breeze is cool. I have managed two hours activity now I must rest. I have smoked salmon for lunch. Then I remember the medical matters and I cant believe its true. So I now am going back into the sun, another world.
