Sensations

Hi, new here and wanted to say hello and wondered if anyone had any advice.

At 50 (Aug 2021), I had a haemorrhagic stroke, which they have not been able to pin point the cause, as I have low blood pressure, never smoked, not over weight, not a drinker….

Left side was paralysed but like yourselves I was determined to recover as much as possible as I survived and intend to live my best life possible. Also got a cancer diagnosis 12 days after stroke. I don’t do things by half….:see_no_evil:

I have worked really hard on physio and walking on my own as only got 6 weeks home discharge help. Finally got cancer surgery just before Xmas (and last week got the good news grade 2 cancer gone) and was concerned that my rehab would regress due to it being major abdominal surgery with an expected 3 month recovery without stroke issues ….I was proved right but struggling to get any nhs help / advice / assistance……it’s feels like we are forgotten about!

Ever since the stroke I have had issues with -
heavy sensation in my leg
what can only be described as a vice constantly squeezing across the ball of my foot
constant tingling in leg and foot
heavy stiff knee
But with lack of movement from surgery it is worse than normal, although now doing what little physio I can and walking daily.

From what I can gather my nerves are the issue. I know it is early days (only 5 months) but does anyone have any suggestions/ experiences

Thanks in advance
Debbie

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Hi Debbie welcome to the forum. Everyone is friendly and offer their experiences. I hope you get some concerns answered when you talk to us.
I’m so sorry you had a double health issue it must have been very frightening for you and your family.
I’m nearly 10 months into my cerebellar lacuna infarct and recovering well. I have a problem of numbness in my right thigh and back calf it’s as if my leg is frozen. I am walking every day hoping this will help my leg as I know you are. I think we just have to try and do what helps us to try and stay as fit as possible. I haven’t experienced anything like yours but, to reassure you, not medically just as a survivor of stroke, we all have stories to to tell and it may give you some comfort to read and know your not alone. I wish you well and speak soon. Loraine :blush:

Hi, yes everyone’s experience is so different. We just have to be stubborn and keep going! :grin:

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Hi Debbie. I also had a haemorrhage stroke…six years ago. However, although I can use my weak left arm and hand, I have the sensation of paralysis around the shoulder joint, despite the fact that I can use the shoulder. I am not a medic and can only explain the sensation by telling myself that perhaps part of my brain thinks the muscles aren’t functioning despite the fact that they are. I just live with it nowadays.

Hi, I think you are right…I will probably just have to learn to live with the sensations and be thankful for what I can do :grin:

Hi Debbie @Vinylchick, welcome to the community. Pleased to hear you’re recovering well from the cancer, dealing with both issues at the same time must have been extremely frightening for you.

It’s a strange thing, all the new sensations we feel/notice in the body after stroke. I’m still trying to not ‘freak out’ every time I feel something I probably just ignored previously, all those sensations, tingling, twinges etc.

Stay strong and take care, best wishes

Thanks, have to be honest and kinda ignored the cancer as couldn’t do any treatments initially, due to stroke.

I agree you definitely notice things you wouldn’t have thought twice about before!

Hi Debbie, I had my stroke just over 2 years ago with effects on right side. Similar to yourself my leg was/heavy and had some tingling. Also could not move my toes and initially could not walk. After about 3-4 weeks managed to walk with a stick a few paces. kept up the exercise the NHS physio had given me which pretty much took up most of my days, but that was not and issue because we had all gone into lockdown and I had had to close my business while it was going on. After the first year the leg numbness did ease and also movement of toes etc. Then the second year things kept improving but slower. I can now walk about fine and although the leg is still heavy, especially when I get tired after a long day it is significantly different to the early days and has kept improving. If I do not exercise for a few days on either exercise bike or go for a walk the heavyness gets a bit worse so really I have found it essential to put time aside when I can to do these activities. All I can say is keep pressing on and as everone will tell you here its repetion.

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Hi

Thanks for commenting, I definitely have similar to you….if physio/walking not done for some reason then I pay the price, so I am pushing the physio/walking as much as I can without being shattered. Really felt the lack of movement after the cancer surgery.

Tried to achieve a 5km walk today but route fell short by 0.3, so route adjustment tomorrow cos that’s this week challenge!

Patience is not my virtue :woman_facepalming: but onwards and upwards

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Dear Debbie
So sorry to hear about the stroke biting you.
A stroke lasts minutes or hours and often the cause is unclear.
The recovery takes years and is hard work. To then have cancer is a terrible burden and my thoughts and prayers are with you.

Well done for getting walking again.
Yes we are forgotten. A million+ of us are floundering around trying to find a good way forward. As the pandemic eases away then perhaps some physio can come your way. I went on courses for relaxation and for gentle yoga. These were both very helpful.
I like to remember that the stroke did not damage my leg. etc. It is the brain that was damaged. We get about two years to start the repair work.

Being positive will help.
Smiling every few hours will help.

Best wishes
Colin

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Hi Debbie Well done for the determination to get rehabilitated. NHS gave my husband an initial 6 weeks Physio once a week. Since then the lock down came… nothing since. Then last year we heard of a charity called Paces that helps with physio for various causes from stroke to cerebral palsy - both of which my husband has. IT does cost us £35 a time either on zoom or in person. It is very slowly helping him but he has lost motivation to try to practise. So don’t lose your determination; keep motivated. You are a lot younger than my husband.
At 30 I had a TIA they said… then it was a migraine - recurring frequently…even if far less so in recent years; it leaves me with legs feeling as if they were in a vice, or grappling irons, especially as I wake up. It is in my hands too nowadays. heavy and stiff… and nothing medics seem to be able to do about it. So keep on keeping on. You are amazing to go through cancer and stroke at the same time! AND you must be a great survivor who can go into revive mode too. Keep positive, and try finding things to give thanks for; I do that regularly but get down when I forget! Then I realise and get back - though I am a committed Christian who should realise the power of thanksgiving!

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Hi Debbie. I had the same type of stroke at age 45 ( now 58). Mine was caused by a dissected vertebral artery which happened in my sleep. No reason could be pinpointed but it usually happens to people who have had whiplash, horse riding accident, or even manipulation by chiropractor. I was told I was just unlucky. Fatigue is still terrible but I have learned to go with the flow instead of fighting it. I have an afternoon nap most days for instance. It’s great that you are walking daily keep it up. I have been left with an extremely painful back so find this very difficult. Annoyingly so as I have put on so much weight.

My whole left side feels heavy so I try going up and down stairs in the house to exercise that side and then have a lie down. One of the most annoying things is concentration. I used to love to read but find I cannot get into a book. I am trying to build this up and read the news on my ipad many times a day. A stroke changes life for sure but I always try and remember that there many folks worse off and that keeps me going when I’m having a bad day. Good luck x

I agree, many worse off than me and I try to remember that when I get frustrated.