Hello all,
My name is Sue, and I’m new to this area of the online community. It has taken me a while to build up the confidence to post something, and am not sure if I am posting this question correctly, but I hope this query makes sense and is easy to understand.
I had my stroke in July 2024, and have been on the path of recovery since. I spent 2 months in hospital before finally being allowed home, where my patient husband is my carer. I have several progressive autoimmune illnesses which I’ve lived with for many years, but since my stroke several things have changed. 2 are small annoying problems, that I’m sure I’ll get used to eventually! My 2 main concerns are the fact that my legs are often in a lot of pain, sometimes feeling like I have a ton weight strapped to them sometimes like jelly, I’ve been told by my consultants, this could be from the stroke or my Scleroderma illness is progressing, affecting my legs. Does any one else have this problem with their legs since their stroke?
My next question is that I now seem to “lose” myself and suddenly do not know where I am or can’t recognise the area I am in. This is a little frightening and disconcerting, so does this happen to other stroke survivors? My GP has just said it’s the brain damage, but it would be nice to know that I am not going mad, or that I am not the only one this happens to and then I would feel a bit better knowing it’s something I just need to deal with, and with a smile on my face, life does go on after all! Thank you for bearing with me!
@Sue22 Hi & welcome to the community. Sorry to hear of your stroke. I hope you find the community are useful place to be.
After I had my stroke I also felt like I got some ton weights fitted to my leg. When I am fatigued I also find that my legs feel like jelly so I guess it’s possible that what you’re experience in is stroke related. It could also be being made worse by your other conditions. I would hope if it is stroke related that it will start to improve over time.
I don’t have any personal experience of the disorientation feeling that you describe but I have heard of other people who have had something similar. The people that I know have also said that over time that that has improved. I think we all think we are going a bit mad when we’ve had a stroke because there are so many symptoms that nobody ever really understands. Stroke symptoms do tend to improve over time although how long depends on many things. For some people it is a few months for other people it can be a few years. I think we can safely say you’re not going mad.
I am sure others will be along shortly to share their experiences.
Hi @Sue22 sorry to hear of your stroke and welcome to our community, I hope you will find this a useful place to be.
You are definitely not going mad. Stroke recovery is many different things to everyone. Hopefully someone here will have experience of the same thing you have described and be able to put your mind. It is still very early days in recovery terms and your brain is still trying to repair itself. Hopefully things will improve as your recovery continues.
Hello @Sue22 - Welcome to the community. The above is absolutely 100% correct i.e. you are not going mad and you are not the only one this happens to. This forum has many members who have been in a similar position to you, though there are always variances as there are in other walks of life.
I am so pleased you built up the confidence to post on this forum. We hope you find it useful and we look forward to you sharing some of your experiences with us and discovering that there are many who have been down the same road as you.
You mention you have a patient husband who cares for you which is really good to know. Perhaps you can also get him involved on this forum so you get a view both as a survivor and a carer. You are both on this journey together and you can both support and encourage each other as you progress Just as it took you time to build up confidence, your husband may be experiencing the same and there is no reason for anyone, be they stroke survivor or be they carer to struggle alone or suffer in silence.
I have sporadic issues with my legs, less so now after five years. Sometimes they shake when I am standing, usually if I have a stressful thought I can’t shift. My right leg sometimes has trouble keeping up with the left when walking. I get heavy legs, or tired legs on occasion. All this was a lot more frequent early on after the stroke, less so now. I don’t get disorientated in the sense of not knowing where I am but I regularly experience disorientation due to cognitive visual-spatial issues, I need to stop and make sure I assess which way I am going and what I am doing. As I am less active after stroke, I imagine I have a degree of muscle atrophy, an indirect consequence of moving less.
Thank you to everyone for your replies and support. I feel a little more “normal” now and can start to accept the problems my legs cause me and work on getting past the pain and heaviness. Thank you
Welcome to the community, I’m sorry to hear about your stroke. Well done for building up the confidence to post, it’s great to have you here.
It’s great that you have a patient husband, a good support network after a stroke is so helpful. I’m pleased to see you’ve had some support from our community and I hope you’ve been reassured that you’re not going mad. You might also find it helpful to read through some of our information about cognition and how this is affected after your stroke. Also your GP may be able to get you a cognitive assessment to check if that’s causing the issue with ‘losing yourself’.
I hope you’ll find the community helpful for your recovery, if there’s anything you need whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.
Hi Sue 22. Lynne T here. I can understand what you mean and didn’t realise that I had problems until I had to stand up and do a demonstration to show others how to use their device. I am 3 years post stroke but when I had to stand and do the demo my legs were shaking so much, someone got me a chair before they collapsed!
Hi Lynne. Thank you. Several people have responded to me and it does seem a side effect from my stroke. Now, I can learn to live with it, adjust my need to walk everywhere and carry on with my recovery!
I’m still not sure on how to use the posting section, so can I please say thank you to everyone who has replied to me, through your post Lynne. Thank you
Hello @sue22 and welcome sorry you had cause to be here,I had an ischaemic right side bleed and was paralysed down my left side because the brain is of course contralateral innervated.i too get pain in my legs and it takes an awful lot of determination and strength to move them but I find moving them helps,to get the circulation moving and stop me getting ‘dead-legs’.i’m not aware of experiencing the disorientation you speak of.but I am very unhappy in the nursing home I’m in and wish I was elsewhere.best of luck,you will get through this,there’s light at the end of the proverbial tunnel❣️ 🜃
Hi Sue,
I’m Dan. I had an SAH (subarachnoid brain haemorrhage) and I get random body pains. They vary but I get a lot in my hands, feet and upper back, shoulders. I was diagnosed with ME/CFS (chronic fatigue syndrome) and CSS Central Sensitisation Syndrome (not actually a syndrome figure that out). I’m 6 years on and pain/aches can change daily or last for months. The fatigue and brain fog is the thing that gets me down the most. I have a high pain threshold. I walked out my house after SAH to the ambulance. Neurological affects, that many people are left with after a stroke, do not have that much medical understanding (ie, they don’t know what causes them) things like fibro, ME that can have an impact on daily living are not recognized by our UK governments unless your mobility is effected. I’m fighting 6 years on. I’m sorry to hear that you are having struggles…not sure I’ve been any help but you are not alone. Recovery post stroke varies drastically from one to another. I hope yours starts to improve for you. Take care.
Dan
Hi Dan, thank you for getting in touch, and I’m sorry to hear of your difficulties too. I wish you well in your recovery.
I find it hard to accept the stoke has taken my final bit of independence, but it won’t win and I’ll get there in the near future. The dr’s say it’s not the stroke but my Scleroderma advancing, but then my Rheumatologist say that it isn’t progressing so my legs are probably a result of the stroke! So we move on as best we can. My husband has been my carer since 2007 so it’s just carry on as usual. Thank you again for reaching out and talking to me. I very much appreciate your message and support. Take care and best wishes for your recovery too. Sue
Hi Mich, thank you so much for getting in touch with me. Ive found it hard to get involved with the stroke hub, but now I’ve climbed that barrier, I hope it will be easier for me to move forward. I just felt that the dr’s did not really understand the problems I had and it was easier to pass off on one of the other illnesses. Now I know there are other people out there with varying and difficult results from a sttoke, I dont feel so “odd”. Thank you again and best wishes on your road to recovery as well. Sue
Hi Sue,
Sorry that you are experiencing so many issues
My husband has had episodes of ‘reduplicative paramnesia’ and can look out of the window and not recognise the street we live on leading to me driving him ‘home’ but of course can never find the way. He would also believe that our house is a carbon copy of ‘home’
Various things caused this but the root problem was the brain damage and reactions to certain drugs. May be worth a chat with the GP if it does keep happening
Wishing you all the best
Just as it took you time to build up confidence, your husband may be experiencing the same and there is no reason for anyone, be they stroke survivor or be they carer to struggle alone or suffer in silence.
