For those of you who are still working age, have you been able to continue to work full time or part time after diagnosis. I was recently diagnosed and feel much better on Pred (before weaning too much ( I started at 20 and am now at 10). But, with the physical therapy I need to do (to help with weakened muscles/strength) and its accompanying fatigue, I don't see how full time professional work is possible without significant improvement in how I am feeling? How are you all doing?
Hi I'm 66 and still working but due to a viral
Infection and a fall on Easter bank holiday Monday it has caused a very bad flare up with PMR so I have been on the sick since then but before all that I was working ok on just 9mg pred daily and was able to do my job as a computer clerk full time but when you have a flare up of PMR you are just unable to work as your body is just telling you to concentrate on getting the PMR into a state of remission so until I have reached that goal I am unable to work which is a shame as I really love my job and miss my buddies at work
I think the biggest question is what your work is.
I continued to work as a freelance translator for 5 years with moderate PMR WITHOUT being on pred - but I don't think I could have coped with getting up and using public transport to get to work for a specific time early in the day. Once I was on pred that aspect would have improved - after the initial 6 months when the PMR had got far worse and I could hardly move. Sitting at a computer was painful and moving after sitting for more than 5 minutes was awful. Once I was on pred that improved dramatically.
I know a physiotherapist and a landscape gardener who have both continued to work - in the case of the gardener he struggles obviously but doesn't have a lot of choice as he is self-employed (like me) and "no work = no pay" because we don't get sick pay.
It is often difficult to get through to doctors that, yes, reducing the pred dose would be nice and good for us but if we have to work then we need a slightly higher dose. But even then the pred doesn't do much for the fatigue which in some cases is more of a problem than the physical limitations and they are bad enough in the workplace.
In the UK, GCA is subject to disability discimination legislation and the employer should provide assistance to make working possible. I know a few patients with GCA or query GCA who have found their employer very helpful - and taking higher dose steroids meant their work patterns were adjusted. I have no idea whether this also applies with PMR - the perception amongst many doctors is that once the patient is on pred they are "back to normal" - if only! We're working on that!
If you need to work it is worth getting your employment occupational health people and your union involved. But since you mention "the physical therapy I need to do..." do I get the impression you aren't in the UK? Very few people there get any form of therapies to help within the health service, it is limited in availability and with long waiting lists. It has been less of a problem in the past because most patients in the UK were already retired (women could retire at 60 until now, it is rising to 65 in stages) and patients in their 50s are a minority.
i worked very hard on our smallholding bales of hay fencing mucking out.this devastated my life.the muscles the weaknes shaking and fatigue.the worst has been the lack of defence to infection.which has given me asthma too. it has taken 5 years to get to a stage where i can look ahead.i have been told to retire but find that hard.i hope now to go back to hydrotherapy that helped me before and hopefully the gym.it is hard and it can be done.i am 65 so its not so easy.theres no gain without pain but its worth it to get back the muscle but take it slow.i took extra pain relief before.ibuprofen.a little every day.ask your phisio for gentle exercises for working at home.swimming helps a lot too.curb your enthusiasm tho. i over did it and realised slow and regular is best. good look keep positive. yvonne
sorry the little every day meant exercise not ibuprofen lol yvonne
Hi Adcan
I am 54yrs old, so should still be working. Unfortunately I have PMR and Spinal Stenosis, so I am severely limited as to what I can do. I would love to work from home but my landlady does not allow it (she lives in the house next door)! It makes me feel pretty useless sometimes, especially as on my 'good' days, I get out for a walk or potter in our patio garden and I am sure people wonder if I am just a fraud! It is the tiredness as well as the pain that is so limiting. Not many bosses would take kindly to you falling asleep at your desk every couple of hours! Then of course, you would not be able to stand up without help, from sleeping all hunched over! Would your company be able to give you any work to do at home? Even just a few hours a week might help with your self confidence. Good luck and take care.
Hello adcan. I am 60 and was diagnosed 7 months ago. When the PMR struck I could no longer commute to do university work. I am now a self-employed freelance science researcher and have had to give this up too even though I worked from home. I tried to work but found my concentration lapsed too much, I got exhausted and sitting at the PC all day gives me pain across my shoulders even on pred. The work I would produce would not be up to standard.
My other work is as a health practitioner and this too I have had to cut right back on, only seeing people in the early afternoon and never during pred reductions.
As a result money is so tight I have had to draw my tiny pension early. I think it is appalling that PMR is not considered a disability as we really struggle.
I really feel for those who have to carry on.
Hi. I was diagnosed in Jan 2014 but remember feeling really tired all the time and not 'right' for at least a year beforehand and struggled to do my job. So much so that in July 2013 I took early retirement as I did not feel I could cope any more. My job involved computer work plus moving/ carrying AV equipment and furniture. No support from employers (NHS) so felt I had no choice. Even now when on pred, I still do feel able to work full time. I would love a part time job but not had any success due to references. Currently living on small pension plus savings, so decided to sell house and downsize. The stress is playing havoc with PMR though! My gp has just gone on maternity leave so have been bounced back to another in same practice who originally diagnosed condition back in Jan. (doh!) I don't currently have physio but do try to go swimming once a week if money available. Recently had to stop volunteer dog walking for a while as pains/tiredness got too bad.
I'm sorry to hear and a bit surprised you had no support from NHS employers as we know a few people with both PMR and GCA who have been able to continue working including one physio and one nurse. I suppose though that you did not have a specific diagnosis which may make a difference.
I do hope you manage to get things sorted out - my husband took early retirement from the NHS and we swapped our biggish house for a much smaller one and came to live in Italy where he does a bit of consultancy for a company in Austria to top up the pension. Best thing we ever did!
Hi Adcan
I was diagnosed with PMR May 2013 i work as a caretaker for the council i am 52 years of age so not anyware near retirment age. Because my job is physical i find it has helped me i suppose its quite a work out in itself. I also line dance once a week and play tennis once a week too.I have managed to get my pred down to 7mg with lots of rest, hot baths and my employers helping me through this i manage to get by, i have also been refered to occupational health who have told them i am almost disabled when a flare up happens. When at work they have told me to rest when needed so i am really lucky. The last time i was off sick with a flare up was September 2013 so fingers crossed things are pretty good at the moment for me.
Linda
I hope you're biting your tongue when you say that Linda about flare up sept 2013 good luck
Early part of this year New Years resolution was to lose weight this was before I had PMR and I found that doing the swimming caused a lot of pain in my arms so much so that I had to go to my gp in the end and he tested me and results came back PMR so I have not done anymore swimming because that was the start of my PMR
Yeah, you would think so, having worked in the NHS for 20 yrs! However, after needing 5 operations for various forms of tendonitis in the space of 10 yrs, being humiliated infront of colleagues and accused of being 'a martyr to the job' you somehow get the feeling that your boss is not going to give you the right support. But that's history now and I have moved on. I don't regret my decision to retire, and I knew it would be tough financially and mentally. I just wasn't prepared for PMR! None of my friends have ever heard of it, and think that because I look well, it can't be that bad. (I also include family in this) Some people just confuse it with Fibromyalgia when I try to explain my symptoms, so I don't bother now and just get on with things, suffering the consequences later. I live alone, which means I pretty much have to do everything on my own, as everyone I know is working. Money is tight, so regular exercise classes are a distant memory (i used to do pilates weekly but at £10 a time couldn't justify it) I only go swimming when and if I can afford, but try to walk most days for about an hour or so, weather permitting, or do stretching exercises in doors. I find it hard to keep motivated though. It's a lonely life, but one I have chosen for better or worse. I find it hard to make new friends and worry that moving is the right thing to be doing at this time. But saving money is my priority until my state pension kicks in (around 2023). It would have been 2017 but the Government moved the goalposts!
Yes, I too get pains in my shoulders and arms whilst swimming, but it eases after a rest. I don't go mad in the pool and pound up and down the lengths like some there. Just gentle strokes and frequent rests at each end helps to clear my mind. After about half an hour I am done, but try to stay in the pool doing arm and leg 'stretches' for another 10-15 mins to make it worth the money spent!
No - none of us were prepared for PMR, it's messed up my retirement too. The PMR and GCA northeast support group prepared a DVD to explain to family, friends and even GPs what PMR does to us even though we look so well - no wrinkles on a pred balloon, cheaper than botox!
I realise this is possibly also too expensive but the best value £30 I spent in the first 5 years of PMR was off-peak Mon-Fri membership at a gym (Mr B*^^"$%!*", other gyms are available ;-) ). I have no idea how much it costs now but they keep texting me offers so they must be desperate! However - that included use of a pool and all daytime classes as well as a powerplate (wonderful for sore backs and keeping muscles in tone even if you can't move a lot, scientifically proven and not just Powerplate's bumpf). I had 5 aqua classes, 2 Pilates and yoga classes in that plus all the usual stuff and the use of the steam room and sauna - bliss.
I too have had to wait - I'm in the readjust phase and have had to wait more than 2 years - and won't even get the new increased version. My husband does - just! Except he possibly loses a bit as we did the maths on the system as it was 5 years ago... Whatever - happiness is worth more than a few quid.
This link takes you to a post on here with links to the support site I mentioned as well as a couple of other useful links. Can't put them in directly - and it might even disappear for a while anyway!
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
Hi. I found this site when searching for how to work with polymyalgia rheumatica and fibromyalgia. I too need to work, but I donot have a speciality that I can start a business with - most of my life I have managed other people's businesses. anyway, about a year ago i was diagnosed with RA, then came the Fibromyalgia, and apparently i was not responding to the antiinflammatories, and took another test which now i also have polymyalgia rheumatica (muscle inflammation - pain); I too have a very hard time working on the computer and my shoulders, back and neck so tired and tight in about 30 mins. and I have to constantly take breaks to stretch, or take a painkiller (which I don't want to live on, ok), this is on top of other health situations which I won't mention here. I agree that this conditions should be considered a disability - it may be not be so bad for some of you, but from what I am experiencing and what I've read - this takes all the life out of you, you can't focus on anything but getting some relief and the struggle is all day...
See if you can find a Bowen or Bowtech therapist - it may not work but a lot of people have found great benefit from adding it into their therapy mix and your description of your upper back problems sounds an ideal candidate. You will know in 3 sessions at most if it is going to help - often one session makes a massive difference.