I’m new to this but does anyone feel they’re worse physically several months after stroke than you were 4 months after?

I had my stroke 1st July 2019 and pain and deteriorating movement the last 3 months is now affecting me mentally as much as physically. My GP is trying all sorts and now thinks my joint pain particularly knees could be arthritis. I just want to be able to walk downstairs without feeling like a 90 year old! I'm only 51!! 

Jen, Generally speaking we improve a lot in the first few months and then progression slows. Sometimes, when it slows we fail to notice improvements. Progress can also 'plateau' and then improve again. 

I am four years post stroke and, if asked to summarise, I would say every improvement is hard fought for and there is a tendency to get depressed when it stalls. The important thing is to battle on and try to get through barriers, whether mental or physical. My walking is very good some days and then more wobbly on other days. After my stroke, Age UK put an extra stair rail in and this is invaluable for getting up and downstairs. I still do not come downstairs 'naturally' but, unlike you, I am not in pain.

If you have joint pain, your gp is the best person to advise you about the possible arthritis and pain control. I think we stroke survivors tend to be more sensitive to pain and what we see as lack of progress. My bugbear is my left hand, which lacks sensitivity. This means that if I do the washing up, metal objects (not cutlery) dig into it and cause pain. I'm also prone to catching my weak fingers in my belt buckle.

I am luck, however, to have a fighting spirit. After finishing this post I will do my lockdown exercises. They are tedious too, but essential in my battle for more improvement. I've already had my slightly wobbly morning walk. For the last two days I have been walking well with my stick. Today, walking was not so good, but I did my walk just the same.

I do hope things work out for you and that your spirits soon improve.

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Hi Jen, so sorry to hear you're suffering, but at least you have a GP who is making an effort - cherish them, because not all GPs are quite so thorough, it's easier for them to dismiss symptoms as a legacy of the stroke.  Establishing if you have arthritis is relatively straightforward, an X-ray can usually show the signs, and if your GP suspects this might be the case, you need to be referred to a rheumatologist, they will then work out a suitable treatment programme for you - this may be a combination of medication, physio, etc.  

As John says, stroke seems to bring with it so many other niggles, and sometimes, it's a waiting game for them to pass as the brain sorts itself out.  If you are able to rule arthritis in/out, you will at least know what you're up against!!  

Take good care, keep up the conversation with your GP, and let us know how you get on ?

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Hi Jen, sorry to hear your feeling down, with stroke I think its par for the course,  I had my stroke in Aug 2017, and have to say I feel worse now physically than I did then, however saying that I am not sure if its just to do with being in lockdown for 12 weeks, and generally not doing what I used to, everything is beginnning to be an effort, my legs ache and the smallest job makes me tired.  Luckily I live in a bungalow as I think stairs would cause me big problems.  Keep us posted Wendy

Statins do that to me, I can't handle the higher doses ie 80 mg astorvastatin, I start to lock up.i now take 40mg but halve that a couple of times per week on my doctors advice. It was about 8 weeks after my stroke in August 2019 that I had to take action as i thought I had kidney damage. I have struggled with statins over many years, I am 68!

hi jen I am coming up to 9 years post stroke and can relate to situation, prior to my stroke I was inexcellent health and condition at 55 years of age I had spent a lot of my life playing  sports I had played football, cricket, squash and badmington I had run marathons and from 14 I had played amatuer rugby league up to premiership level yet after about  a year  I developed lots of aches and pains feeling as if I had been given a good kicking down a back alley I was however determined that I would get through it and persevered with excersises and walking and these aches and pains eventually wore off I still do have days thoughwhen these pains return but I work through them. I note that someone on this thread has mentioned statins, reports do state that these can have an effect on muscle pain so if you are on these it could be worth a word with you GP  I note that you had your stroke about 10 months ago and you dont want to walk down stairs like a 91 year old I find it remarkable that you are even able to get up and down stairs after just 10 monthsplease persevere and I am sure you will see improvement but dont forget to rest as well

stay safe and keep well

Hi Jen, I had a subarachnoid hemorrhage in April last year. During the 5 weeks I was in hospital because I couldn't swallow I couldn't eat or drink and lost 2 stones. I found once I came home that my legs were really weak and my knees were particularly painful my doctor seems to think that because I lost a lot of weight in a short space of time that my muscles are weaker, I practiced going up and down the stairs a good few times per day to try and build up my legs and walking our dogs and have to say that they do feel much better. Good luck with your recovery x

I think I'm feeling this - maybe just not prepared to put up with aches any more and being strangely aware of things I do, as though it's someone else.

Hi,after my stroke I felt much better probably 5 months ....then a few months later I have had aches and pains and it is side effects to medication ..Atorvastatin made me feel like you do.But talk to your GP about the possibility 

I'm 86, and had a cerebellar stroke in March 2020.

I walk 1.5 miles with a 3-wheel walker @ 2mph, a third faster than before my stroke, but I don't seem to be improving.

How could I manage trains & a suitcase, never mind about planes?

Bryn improvement is very slow. However, train companies and airports provide excellent help for the disabled if arranged in advance. After my stroke five years ago, I had to go to my best friends funeral in London. Someone came with me as my walking was much worse then, but I took taxis to and from all train stations. It worked out fine.

Maybe you are improving, but just hardly notice the improvement. As John says, it is a slow process. Very slow. I keep a diary and when i look back, progress is there but i just dont realize the changes that have ocurred.

Railway staff, if they are notified in advance, will do their best to help you. There are often lifts and alternative access that will be quietly opened for you. Likewise airports. If notified they will accompany you.

best ŵishes




Thank you!

I need to know everything before I  leave home.

Thank you!

I need to know everything before I arrange the visit.

Cerebellar stroke 1.5 years ago ...

Hi Bryn , unfortunately I belive these strokes can ?be amongst worst as almost the nerve centre of brain. For me not really improved, EXTREME fatigue every day bed , mobility / stick inside ,scooter outside, but not very good for me ,as when outside sensory overload, almost shuts down brain after half hour . Also have walker ,but can not manage more than driveway. Impressed with your 1.5 miles . I have accepted NO travelling for a while . 

Hope things improve for you David .

Thanks for your reply. The pain is getting worse so I've ordered a tens machine that I'm hoping will help?

Interesting and thanks for reply - I'm taking avorstatin one on an evening! But pains are worse than ever so I've ordered a tens machine so hoping that will help? But I'll ask my gp about poss side effects of the statin.

Thanks very much for your reply! I am definitely going to look into side effects of statins! I've just ordered a Tens which I hope may help? Thanks for words of encouragement 

Statins seem to be coming up as an issue! Thanks I will definitely look into this

Thanks for response Wendy! I'm going to check with GP about statins as I'm taking one avirstatin on an evening but seems this maybe a side effect?