The wrong leg!

Hi all, just joined today so I'm hoping to get lots of advice and support. I've read lots of your thoughts and feel I belong here ! I had a mild stroke in mid March this year and spent nine days in hospital relearning how to get my balance and mobility back whilst battling appalling dizziness. My left side is affected so I've been given loads of exercises to do and they're working very well - except that now my RIGHT leg has sciatic pain and I therefore have separate exercises for it too ! I still suffer from dizziness but my doctor and physiotherapist say it's only been eight weeks since the stroke so I must be patient. But it's very frustrating! 

Dear Pam

welcome on board.

i dont think you had a mild stroke, interesting to see what your diagnosis says. When you left hospital, a letter was sent to your GP. You will need a copy of that letter. Ask the staff at your GPs, they should send one without needing to see your GP.

you will recover, bit by bit, but its all so slow. Months rather than weeks.

i too got sciatica. Along with quite a wide selection of other things.

you might find the sciatic pain goes down your right then down your left. It eminates from your spine.
above all, remember that none of your limbs are damaged, "just" the messaging system.

fatigue and less common dizziness are par for the course. Get plenty of rest and work at getting good night sleep.

the stroke that got me wasnt severe but i got a few bouts of truly spectacular dizziness. Luckily it was just on and off and not every week. I recall falling over when sitting down. I just laugh.

No two strokes are the same, but many have common features.

be positive

smile a lot

you are not alone

colin

 

Thanks ? It's a whole new world for me and I'm naturally frustrated by the slowness of my recovery. I saw my physio yesterday and mentioned the dizziness so she's given me new head and eye exercises which are challenging but important. She assures me that I'm making progress with it all - and I can see that many things are a lot better, but I'd dearly love to know how much longer it'll take. 

Try keeping a diary. Just a few words each day. Then you will be able to see how things are progressing.

out the blue, today i am stroke dizzy. I had forgotten how awful the full blown fatigue is. 
 

i Understand that your brain will continue with repair work for about two years. 
your recovery will not take two years, maybe quicker maybe longer, but the brain apparently works away for about two years. 
 

we are alive. Many do not survive. 
 

smile smile smile. And be positive.

colin

 

 

Morning, I too had mine now about 7-8 weeks ago after spending 2 weeks with in hospital. I’m like you and want need to know when will I get better but I now know from here and the therapist that’s its still early days and have to take the progress made so far as a positive. Hope your ok a

Hi Colin, Just read your reply and picked up on bad day, stroke dizzy full blown fatigue........and my question is.......with this stoke fatigue is it just not tiredness that gets you? I have days where I get up and am so weak and dizzy and just feel so awful, and after reading your post am now hoping perhaps that is part of SF? It would give me a great sense of releif if it is, I kept thinking SF was just tiredness, but if it causes other symptoms would love to know. 

Thanks in anticipation. Jane.

Dear Jane

SF is stroke fatigue, or to be precise post stroke fatigue.

many of us suffer SF and its exact symptoms vary from one person to another.

most common is tiredness plus unpleasant feeling in the head.

The stroke got me 5 years ago. I had difficult SF but others get worse.

out the blue i got up one day this week and was dizzy. On the verge of falling over.

this reminded me how awful SF was. I felt as though my head was being squeezed. And i was exhausted. In years one and two i could be active for two hours but then the sf started and i was utterly exhausted.

so to answer your question, SF is most certainly not just tired.

I would get a good day then a bad day. 
dizzy, fatigued, feeling sick. Brain simply would not function, so tears, depression and goodness knows what else.

i can tell the difference between the tired part of SF as opposed to sleepy tired.

i would never fight SF. And i would nap during the day. There was night type naps and SF naps. The SF naps were wonderful.

i am an FCA but whilst SF is still with me i have no chance of doing any professional work. I make tea and coffee and wait on tables. I also do an administrative job for the local graveyard, about five hours a month.

the lack of understanding by others is hopeless. They dont have a clue. Currently some versions of ME have similar fatigue, but there is a refusal to acknowldge us stroke survivors. And now we have long covid. The symptoms, excluding respiratory aspects, is exactly SF. Maybe the huge effort to treat the long covid just might flip over to us.

so please do not think you are suffering just tiredness. Its a million times more than that. 
I learnt that to combat the SF it was, and is, essential to get full and proper night time sleep.

well i have gone on a lot.

be positive, smile smile then smile some more.

you are not alone

colin

Thank you so much for your informative post, that had helped me so much. I understood the tiredness, but didn't know what was happening with the other symptoms. You have clarified for me, so don't feel so anxious about it now. As you said there is not much information on it, we are left to fend for ourselves somewhat..... thank God for this site!!! Once again, many many thanks. Take care, Jane.

Dear Jane

 

i got essential help from others on this site, way back in 2016. So i am happy to pass on what i have learned.

The hospital doctors explained that the stroke had damaged a small part of the brain, the centre of the damage is permanently wrecked  and the edges might repair. So my brain was trying to repair the edges and also finding ways to get around the wrecked bit.

this repair work would typically take 3 to 24 months.

so we have to let our brains do its thing. Whilst it is trying to find a way to work, say, our toes it might well ignore our fingers.

our brain needs to close us down from time to time, thats when we feel truly awful. 
 

we need to give our brain time to rest and we need to give it lots of water.

no wonder we get anxiety messages ! No wonder we forget things.

7 weeks is very early days. I am old so recovery is slower. If you are not old and also fit and eat a good diet then repairs are faster.

i am not the tiniest part medically trained. And since 2016 medical science has advanced.

its good to talk

colin

 

Hi Pam258, I completely understand how you feel. It is SO frustrating and I too am far from patient. I had my stroke in November 2020 and even still it seems like everything is taking forever. I had to learn how to read and write again and it still takes me a long time. I still get complete numbness in my right leg, I cant feel it at all sometimes and I still get dizzy if I move around quickly and especially as a passenger in a car. What everyone keeps saying to me is that they can see improvements but its just not a quick as I would like I guess as I am so far away from being me whoever that is? :)

LONELY & ISOLATING PLACE !

Hello there, yes totally agree . I went to boarding school, around young age , this almost turns you into a bit of a loner & weirdly you accept your own company better. But NOTHING how I feel now ! Strange , as I have fantastic wife ,always there for me . I think I just feel shut out of the real world & surving in this STRANGE little word of my own ?

Good speaking David.  

Dear David,

very true words.

the pandemic adds to our confusion.

perhaps the stroke groups will reopen soon and offer you some support. And any other groups that used to exist.

i believe there are one million SS in the UK, so your loneliness might ease soon.

best wishes

colin

Hi David, 100% my friend. My Mrs is amazing as well as my family but it is still such a lonely place. I too feel like I live in a strange little world myself, I totally understand that. It's even more strange with the whole COVID thing. There doesn't seem to be much help in dealing with that as much as the physical help.

If you would ever like to have a chat please feel free to message me directly, I am always about to speak. ????

It's good to know that I'm not alone in feeling fed up with the length of time this is taking - I think ! I seemed to make quite a lot progress with my balance and mobility fairly quickly but now (10 weeks after the stroke) I'm more bothered by the fact that I still get dizzy spells and have horrible vertigo whilst lying down ! My brain insists on telling me that I'm not safe in bed but actually falling off a tall building. I spoke to a dr about it yesterday and she reckons it's BPV and has prescribed some tablets. I just hope they work ! 

Hello Pam,

I'm seven months post stroke, I still get "dizziness" or rather I have an equilibrium impairment which means even with my eyes shut I feel wobbly but I have worked out my brain is confused about where my limbs are in relation to space. During the first six months progress will be faster, neuroplasticity is most active in that time. After that, progress gets slower with residual symptoms needing time and exercise. I do eye exercises every day (three times a day), it has been gradually helping but still progress is slow. 

Keep working at it, you will get there.

Rups

Hi Pam,

I am sorry for the ridiculously late reply. Have the tablets helped with the BPV? What is that by the way, I have never come across that?

I hope you are doing better anyway.

My reply is a bit delayed too ! I meant BPPV (aka vertigo) and I discussed it with a consultant who referred me to the ENT dept of a local hospital. He also told me that the tablets would help but not fix it so I decided against taking them ! I haven't heard from ENT yet but my physio also referred me for specialist physio to help with it : I've already had one session and hi again this week. It's not pleasant but I hope it helps long term. 
Take care.