Thankyou all so much for your previous help on pmr! You all gave such great information so I thought I'd ask another question.. this time about work.
So I'm currently a medical secretary, I'm looking for something else but I don't know what my limits are yet with energy and pain and flare ups. Currently in a flare so I'm back up to 15mg pred for a couple of weeks as the doctor advised, it's a struggle but I'm working! I'm just wondering what you do for work and is it manageable? Because ugh mornings are hard but by the afternoon I'm ok. I do call in sick when it's bad but I try to push through the day as I'm sat at a desk for work. I guess the travel to work might be taking it out of me, so I'm taking the bus now instead of cycling, which helps. I'm on a band 3 at the moment, looking for something with better pay but I'm looking for ideas because I have no idea what I want to do, well if an archivist job comes up I'd happily live out my life cataloguing fossils! But I don't have a degree and that seems to be the requirement these days for alot of things! Plus I live in Somerset, there aren't enough museums locally to work in! I'm looking through indeed pretty much daily to see what's out there.
Thanks for your help
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Claremarie83
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When I was diagnosed with PMR I was 63 and working as a supervisor at Sainsburys checkouts. I was working part time 20 hours I think. I had 6 months off including while a diagnosis was being considered and after diagnosis. Before my return to work I had an interview with Occupational Health and returned on a phased return and my duties were changed to sitting on a checkout. I cut my hours after this to 15 hours and retired just before reaching 70.
You are quite young to get PMR so I expect you have to and want to work. I hope you find something that is suitable for you.
Thankyou, yes I do want and need to work (I can't buy house and garden plants if I don't 🤣) plus the thought of not paying into a pension is just.. 😱😱 Thankyou for your kind words
And actually a chat with occupational health might be something I could do again with the new diagnosis so Thankyou!
I know I am really lucky to be able to work from home most of the time. I was diagnosed in May but had already had an occupational health assessment due to the pain I was in with my back which we now know was PMR the assessment gave me a sit/stand desk and bespoke chair which have helped. WFH also means I can take breaks if I need to. I work for local authority and most of my work is phone calling and stats so very flexible. My manager is brilliant and very understanding of my need to cut down on some other aspects of my role for a year or two.
Can your HR give you some advice, especially given the nature of your work ? Under the Equalities Act they ( your employer) is obliged to make reasonable adjustments to retain you. Even flexible working hours would be a start.
Unfortunately they don't seem to care.. they offered 8-4 or 9-5 as flexible hours as it is a full time position, they are however, offering a secondment work from home role in a different less stressful role because ugh stress does definitely make things worse. So I'll be working from home 3 days out of 5 and 2 in the office but that is with a massive pay reduction... Which is lovely of them to sort this role for me but I A) need to wait for someone to fill my position, which isn't happening quickly at all (it's been 6 months already) and B) the pay reduction is not ideal! I've also been told that this wfh position is not permanent and if they decide that the role isn't working out then I will return to the hospital to work full time at the lower pay grade and I may well be working in another department. I think because of my health issues (mostly before I was diagnosed..man I was fully disabled) they are trying to find a way to get rid of me as they did away with the probation period. So I'm just a bit worried for the future. Maybe something new would be good. But I guess sometimes it's better the devil you know!
I had taken early retirement when my PMR/GCA struck. I had been doing voluntary work for 6 years that I really found satisfying and fulfilling. Unfortunately I just could not carry on. I could barely get up the steps of the Law Court. My heart goes out to those who cannot choose to quit work and struggle along on sick pay. I cannot imagine how you manage.
This is from another member who has asked for advice - maybe reach out to them for advice - and when you look at the post it also brings up related posts -
I always suggest looking at the CAB website for info - and have you involved your union rep on the flexible working hours [which have to say what has been offered- isn’t very!]
As SheffieldJane has said your employers are obliged to amend working practices to help you.
Been signed off work since February having been sent home by my Occ health unit.
I have a very physically & mentally challenging job, working shits, weekends, being called out in middle of the night & often not knowing what time my day will end. I am not in charge of my own time.
From the outset my significant problem has been the extreme fatigue & cognitive problems that come with it. Chuck in the flares & tweaking of Pred as well.
I struggle to rouse first thing & get the full band width of fatigue issues on & off through out the day. It ranges from having to sit down & rest ( sometimes for an hour, sometimes for the entire day) to full blown sleeping.
If I do have the energy & will to carry out normal activities, I can kiss the following day goodbye.
I'm now at a crucial point. I have an appointment with my GP next week to discuss my latest flare & also finding out if this is as good as it gets for now.
I then have a other appointment with my employer and Occ Health unit to discuss what on earth I can realistically do in the workplace with these symptoms?
I am weeks away from facing financial ruin & I have no idea what the short to medium term future holds.
I am very very worried & at the age of 54, I face losing everything i've worked for.
sounds like you have many office skills. Have a look on local authority sit see what job vacancies they are looking to fill. Local authorities pay fairly good salaries. Good luck.
I was 65 when finally diagnosed with PMR. At the time, I was traveling almost weekly to various States in the USA and even world wide, conducting training sessions and seminars to groups of 25 to 30 people at a time. It was absolutely awful until I was diagnosed and put on PRED. I considered it a miracle drug, as I felt nearly normal compared to before. Yes, I had flareups but simply upped the dosage to manage it. It took 6 years, but finally it ended.
Unfortunately, however, 2 years ago I got nailed with GCA, which has been a whole other story. No way could I have worked like I did with this disease.
Have you tried splitting the dose to make mornings better? The ideal time to take prednisolone for good mornings is 3am - but of course that disturbs sleep and not everyone can cope with that. But you can take about 2/3 of the total dose in the morning and the rest later enough to carry the effect over to the next dose in the morning - often lunchtime is late enough to achieve that.
Almost my entire family in Scotland are working for DWP - sounds a darn cushy number to me. Flexihours so they save up time to have a few hours off when they like, work from home more than go into the office and well paid. Anything like that?
I worked freelance from home translating - I couldn't have coped with a commute! Just had to make it from bed to computer desk in the same room!!
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