Good morning everyone
First off I don’t want to offend anyone with the wording of this post
I was wondering what everyone’s job is and how long after your stroke did you you return to work and how it went, in particular those whose jobs are particularly physical
I’m a fork lift truck driver, but due to my condition, I’m now 10 months post stroke and suffering from CPSP and with no definite date when I’ll be recovered, my employer has had to let me go on medical grounds though I have been told I can return when I’m well again
My job can be particularly physical ( not as simple as just driving round on an FLT all day)
Late last year, I set myself a target of returning to work in April/May but that was unrealistic especially with the left side weakness and CPSP. Ive now accepted that it happens when it happens although I do get really down at times cos I miss my job and work mates so much
I too was medically discharged, but was done as redundancy, I used to manage 5 charity shops, assist my area manager daily, with the intention of having his job as he was going to leave. I was very popular with other area managers who requested me to help them with store openings and merchandizing as well as training new staff and recruiting volunteers. this was a very tiring job , one I loved. I do miss it ,however have no future plans to return to work. Good luck with your ongoing recovery. I am 2 &1/2 years post stroke
@stokiejoey sorry to hear that your employer has had to let you go on medical grounds.
I have recently returned to work part time - 17 months post stroke. My job is desk based mainly but did involve lots of travel. I’ve been exempted from the travel in the short term.
It’s disappointing when you can’t return to what you wanted to do but whilst it may not be possible right now you may well be able to return further down the recovery line. It gives you chance to focus on your recovery.
Thanks for the replies
I do believe that one day I will go back. I’ve Been there 10 years and can’t imagine working anywhere else. I’ve got a close network of work mates, who I really do love to bits and have been very supportive, but even they don’t know I’ve left( they think I’m just on really long term sick, which is what I am I suppose)
I used to moan a lot about the pressure, targets and wages, but sitting here every day, and thinking that at only 48 yrs old I’m still lucky and it could have been a lot worse, it gives you a different perspective on life.
I will recover, I’ve just got be more patient, which unfortunately is not something I’m good at!
I too am very impatient & i thought i’d be back at work long before i went back. Had my stroje aged 49. I too had great colleagues who kept in touch loads whilst I was off & they all seem pleased to have me back. I’m sure you’ll get there but if I had one bit of advice it would be to take all the time you need so that when you go back you can stay back.
Hi
I too have cpsp and I think without it I would be back at work,my job is non physical.
No one really mentioned cpsp and how much impact it would have. I never knew it could happen with a stroke. I haven’t given up returning to work 15 months on but I know that unless I can minimise it (there is no cure) it’s going to be difficult.
Can I ask you what medication you are on ? Have you tried hypnosis ? Or accupuncture? Has there been something which has helped ?
Cheers
Hi Nigel. I’m currently on gabapentin 6 a day, which isn’t really working
, I’ve tried various dosages of amytryptoline as well. I think I’m being referred back to my old stroke consultant.
Reading into it I think my last hope is to try pregabalin
I need my life to return back to normal and I’ve got no chance while the CPSP is still there
I’ve not tried hypnosis. Can’t afford.
Everything with myself is progressing just the stroke pain holding me back now
What have you tried to ease the CPSP?
All the best👍
Good evening @stokiejoey. I am sorry that you find yourself in this position. Work is a way of life that is so much more than a way to earn money. It is being part of a team, providing a service, knowing where you are in the world with purpose.
I had a very practical job in the NHS which I changed mid pandemic to a much lower paid still practical job. I loved the people interaction. I was dismissed on grounds of medical incapacity a year after my stroke but I am fortunate to have been awarded ill health retirement at 52 so have a decent pension. I miss people and a purpose though. I am actively looking into volunteering opportunities, with some success. Something good needs to come out of this. I should mention I am very fortunate not to have any pain as a result of my stroke, and cannot think how I would manage if I had that to deal with that on top of everything else.
I really wish you all the best and hope you find a solution that works for you, Julia
‘…Central post-stroke pain (CPSP) is a form of nerve pain that occurs in about 1 in 10 people after a stroke . This factsheet describes how CPSP can be recognised and explains some of the treatments that are used to help relieve CPSP. It also looks at some strategies that you can develop to help yourself if you have CPSP.’…
My wife and lady from stroke association keep telling me that, but I don’t listen at times
My wife told me that when she was sat up the hospital, straight after after my brain scan and she’d been told it was a TIA and right hemisphere ischemic stroke id suffered, she knew then it was going be 12/18 months until I recovered( I’m currently 10 months)
Unfortunately the stroke pain has thrown a spanner in the works of my recovery and it not being managed properly by my doctor, but thanks to help of the lady from stroke association, I’ve just been told that I’ll be hearing from stroke consultant very soon, and she’s very confident it will be under control in the near future. When it is under control. I’m hoping it will lead to me driving again and gaining more independence. If that happens the all being well it will lead to other things, including going back to work
@stokiejoey the Stroke Association Support Workers are great aren’t they. The one that I’ve been dealing with has unlocked some things with my stroke consultant & my GP. Something I never expected they could do but am very grateful to her for all her help.
Really hope your pain can be brought under control soon. New horizons are on their way.
Thank you. Yeah The stroke association and lady who’s been helping me have and are continuing to be amazing, as is my wife and our 2 teenage daughters. The impact it’s had on my family has been horrendous. We had to cancel a family holiday last year, can’t make any plans for a holiday this year, or plan for days out. Me and wife love live music ( though she doesn’t want to see Level 42 with me again, which I understand cos I’m obsessed with them ) but any plans to see live music are currently on hold cos we can’t book anything not knowing who quick or slow my recovery might be
For sure a stroke doesn’t just affect the syroke survivor but all those around us too. My family & friends have been amazing & i certainly don’t take of that for granted.
Everyone’s situation is different but we decided not to cancel out holiday last year. Whilst it was difficult i am very glad we did it. We used all the help that was available to us (e.g. airport assistance) & didn’t plan anything much whilst we were there but it did us both good. Maybe you could look at doing something this year? It might not be easy or exactly what you want to do but there is so much help out there these days & companies specifically for people with disabilities.
We were due to go Cornwall last August. Not sure what’s happening this year but summer holiday is looking extremely unlikely, but haven’t ruled out going away in autumn. Have to see what happens. This time last year, things were looking good for us after a tough few months, then in an instant, when I collapsed at home, everything went tits up and our lives were turned upside down. Never know what’s around the corner, and after the amazing progress I made in those first few months, and a how the progress has slowed considerably since, I really don’t know what will happen rest of this year.
The first step is to find a medication that will get this stroke pain under control.
Hi Joey
I started off on doses of just one medication and then moved to lowish doses of two. Right now I’m on 3 x 75mg of pregablin and 30mg of amitriptyline.
I have found it very difficult to get used to the higher doses. Zombie like, thick head, very sleepy. With this current set up, not too bad for first 3 weeks but for the last couple of days, difficult to stay awake. The pain sensation is a bit reduced though, stiffness, pins n needles and numbness still there.
I think the aim is if at its worst pain wise it’s 7 out of 10 to try to get it down to 2 or 3.
I don’t think this is temporary. What I’m hoping is it might become more of a background feeling that is low enough so I can learn to live with it.
What is really odd, I can feel pretty awful but can still set decent times on my exercise bike. So it is very much a sensation,it’s not real as it would be with a contact injury. There are other times when I know I can power through it if that makes sense, the strength is there to overcome it.
The NHS pain clinic, if I can ever get an appointment, will offer up to 6 sessions of accupuncture. There is an MS charity in Bristol which offers hypnosis at a much reduced rate, about half of everyone else so going to try that towards end of next month.
I don’t have a stroke consultant or nurse. All my medicine changes are via the local pharmacist. Regular contact every 3 or 4 weeks to see how it’s going or how to try next combination.
I think when people state that things will get better over time,they don’t have cpsp. May be it will improve in time. I have noticed each time I wake up it feels much better but movement or stress fires it up. If I focus on an exercise it’s not so bad.
Let me know if you find any improvements ? I would definitely suggest the pharmacist route for progress.
Hope this helps.
Thanks for the reply Nigel. Still waiting on letter to see stroke consultant, but been told by stroke association lady it should be soon and she’s pretty hopeful the CPSP will get sorted
I’m so desperate to drive again ( I know work and everything else will follow) mentally I feel with it. Physically I’m not far off where I want to be, just need a little more strength in knee , ankle and arm, but I can’t drive until the stroke pain has eased to the point where pressing the clutch and holding the gear stick doesn’t hurt.
I suffered nerve pain a few years ago with neuralgia and took tegretol, which worked really
well and disappeared, however I know this is different
I found this today. This is a review of lots of reviews. Given this is saying that pregablin, gabapentin and amitriptyline don’t work, why are these the drugs everyone is given ?
It also confirms that acupuncture has been shown to reduce pain.
We have rung the pain clinic in Bristol who are now processing referrals from January.
Mine was in Feb so got a few weeks to wait yet.
Oh for a properly funded NHS.
The pain clinic does seem the place to be. The neurology consultant was nice but other than throwing more drugs at it (which I can’t tolerate and seem of low value) I didn’t gain much.
