Having PMR and working nearly full time

[margiebell4]

I have just been diagnosed with PMR and am 55 Is it realistic to expect to continue to work 4 and a half days a week?

[piglette]

I carried on working full time after being diagnosed with PMR but I had an office job which made it easier. I did take it more easily though as sometimes I just had to lean back in my chair and stop for a while. Even phone calls could tire me, on the other hand it did make me more efficient as I tended not to chat.

[Runrig01]

I work on a very busy surgical ward as a nurse. I developed PMR at 46, I have now had it 3.5yr, and have continued to work full time, I worked for 14 months without diagnosis which was the hardest part.

It helps to have an Occupational Health department, they restricted me from doing night shifts. I do 12.5 HR shifts, and they agreed a max of 2 at a time, then a day or 2 off to rest. On the whole this has worked well, although I have just returned after 3.5 month off with GCA symptoms. It does help to have a positive attitude.

I am lucky to have a very supportive team who ensure I don't do the heavier work, and always do the things I struggle with. In return I do something I can manage in return, like monitoring a patients BP etc. I found it very helpful being upfront with my colleagues, although i appreciate they are healthcare professionals, most hadn't heard of PMR or GCA.

[35bump]

Hi Margiebell4

I have taken sometime out of work to stabilise my PMR and visited occuptaional health on Friday for an assessment before going back to work tomorrow.

I normally work 4 days per week but do a lot of driving so am going back 3 half days to start with to build up and with no driving to start with as my concentration is bad and I'm still a bit shay and wobbly.

I would encourage you to get a proper OH assessment so you and your colleagues have some guidance.

My dread is that I go back and can't cope so am taking things slowly in the hopes of a better outcome longer term.

From helpful comments on this site it seems to be a very personal journey for all of us with PMR so take care of yourself and try to avoid thinking too far ahead.

[TimTooYoung]

Hi I can only tell you my story so far, I am determined to continue work. I am 58 and was diagnosed with PMR in November 2014. I started predict at 15 mgs. This wa relieving the symptoms well and I continued to work normally just pacing myself. I do mainly administration work and some light manual work with some Driving between Bristol and Birmingham. I had a scare in January and was admitted to hospital with suspected GCA but this was not confirmed, My dosage of pred was increased to 60mgs. I had about 4 weeks off work at that time and since have returned to work. I have reduced pred to 7.5 mgs and things are going fine. I am working normally and my PMR symptoms are at a very low level which is very manageable. I hope to continue the reduction of pred and continue working to live life as normally as possible.

[Parijm]

PMR arrived a year ago for me when 61 and working full time in an office. I reduced to a 4 day week at start of the year since the working week left me shattered all weekend. Monday is my non work day. My work requires me to get up early at 5.30 to be ready to leave at 7.30 - I always do Pilates exercises for 10-15 mins after hot shower or bath plus walk dog similar time daily. It helps to loosen up my early morning stiffness. I would like to reduce to 3 days as I am not really 100% coping: Saturday's are usually spent doing very little but I am listening to my body a little more. If you think full time is too much - I guess it's because it is. Very few people know anything about PMR, certainly not my work colleagues. Don't overdo things with PMR otherwise it all goes backwards again.

[mousebear]

I am 51 just diagnosed. At v start of this 'journey' and sent notice to my employer, who noted it and said 'no need to go to OH at this point, let's see how it goes'. I was not happy about this as timetables (I teach) are being put together for Sept, so contacted the union. They were adamant I need to get a OH appointment with Drs letter to get formal process underway, in order that my rights to reasonable adjustments are enshrined now. I find this reassuring as could see otherwise it being thrown back on me ( e.g. To find colleague(s) willing to 'swap' timetable slots, etc.). If you have an OH department as others have suggested perhaps something to consider. I too am being upfront with colleagues but with this approach I'm hoping I need not rely on symptathy and 'favours', rather a formalised understanding of my health situation. Best of luck.

[PMRpro Ambassador]

It depends on the job you do and how bad your PMR is.

I had PMR for 5 years without being treated at all and worked - but I was mainly a freelance translator working from home. All I had to suffer was the stiffness from sitting for any length of time. I chose when I worked and only had to get from bedroom to study, didn't have to get dressed first thing in the morning and catch the bus/walk any distance. I discovered that if I went to the gym and did an aquaaerobics class in a warm pool first thing in the morning, topped off with 15 mins in the sauna/steam room I could move better and had a far easier day. But I could do that - getting into a swimsuit and jogging bottoms didn't require heroics! And I didn't start work until I was ready.

When the PMR turned into a monster after 5 years, working outside the house would have been impossible before I was allowed to start pred after 6 months. It was a miracle in terms of pain and stiffness but I wouldn't have managed anything that required any physical application - I dropped things, couldn't turn a door knob even with pred, couldn't stand for any length of time. And would suddenly feel I'd hit a brick wall of fatigue - and all I could do was sit down and wait for it to pass. I skied - and have been half way down a very short run when that happened and have had to sit on the snow and wait for quarter of an hour for it to pass. It is a very common and real obstacle to anything you want to do at times.

And, above all, as I said somewhere else this week, I couldn't cope with packing a case for a weekend away without almost having a meltdown, doing two things at once was suddenly beyond me, even producing a meal for the two of us was a challenge. Working for myself was one thing, I had no boss hanging over my shoulder, apart from meeting a deadline no-one set any limits. I could work evenings, weekends to get things done and rest when I needed to.

So there is no straight answer - you have to find how you are now you have pred to help the pain and stiffness and then how well you can manage your job and how helpful your employer is.

[margiebell4]

Thank you everyone for taking the time to reply. I work in a main stream primary school with children with special needs, which can be mentally and physically challenging. I was thinking of getting Occupational Health involved so your advice has encouraged me to inquire about this option. I haven't been referred to a rheumatologist is this normal.? I have so many questions!

[poppetpain in reply to margiebell4]

Hi. I was diagnosed with PMR 7 months as ago at 66 and was referred to rheumy but only saw his side kick who was of no help at all other than confirming what my doctor said and keeping me on pred. That said I have had blood tests and good follow ups and finally met the top man who has given me a lot of confidence in him. You need to carry a steroid card at all times showing your present dose. You will never get better advice than you will glean from this site but you should be under the rheumatology department n case you have problems as I have been given an emergency phone no. and would expect to be seen quickly. BTW I take my 10mg of predisanole late at night so that I can literally start the next morning pain and stiffness free as it doesn't affect my sleep pattern. Everyone has to find what's best for them but there are lots of suggestions to be found here. My heart goes out to those of you who are still working and having to cope with the clock ruling your life. Love and hugs x

[Pipistrelle in reply to margiebell4]

Sometimes GPs manage this condition just fine, IF they are up to date on it and treatment, BUT most of the time it is better to be under the care of a rheumatologist in my opinion...I do think the initial diagnosis and care approach should be determined by a rheumatologist at which point the GP can take over. That would be the best practice approach.

On work -- I continued to work as a writer; in retrospect I should have taken a little more initial time off and lightened my work load a bit.

[PMRpro Ambassador in reply to margiebell4]

For straightforward PMR there is no real reason for a referral to a rheumy - apart from any other consideration you could wait months for an appointment before you got any treatment. If the clinical picture is typical, the response to 15mg pred good and your GP is happy that is fine.

Atypical cases should really be sent to a rheumy - as I was. So I waited about 3 months for the first appointment, he condescended to let me try a 6 week taper of pred as I was off to the US to a meeting. I took the first 15mg at 10.15 and at 4pm walked down and back up the stairs normally and with no pain - for the first time for years. Six hours after missing the first dose 6 weeks later I was back in the same state as before. Some rheumies take that as confirming PMR - mine didn't. First I saw the sidekick who simply repeated all the boss had done 8 weeks before and said "I don't know" and fetched the boss. Who wouldn't listen to my story of how pred had worked a miracle and wanted it to be ANYTHING bar PMR and, because I was moving house within a few months, insisted I would have to find a rheumy there before I could be treated. Luckily a different GP in my home practice was convinced by the history and gave me pred.

A good rheumy is worth their weight in gold. You are better off with no-one than with a bad rheumy. I had 5 years of moderate PMR which neither GP nor a rheumy recognised - 51, normal bloods, otherwise textbook - but then it went haywire and the GP and a different rheumy offered me nothing. I have had 2 outstanding GPs now and their management has been superb.

The only way to see is to try - but get the union and OH on board and don't be bullied into something you can't manage. But always remember: PMR feeds on stress. Many experts believe stress can be one of the triggers and judging by many of the people on the forums it plays a major role. Stress can be physical, emotional or psychological - beware.

[baileys57]

Hi.. i have had temporal arteritis and pmr for 4yrs.. cant get off the steroids. Lots of medication side effects...im working 4 days in a school. But have decided to give it up. Look for less hours...

[tourdefrance]

Having started PMR at 59 some 7 years ago I managed to continue lecturing in a full-time post until I retired last July. The pressures of the system are enormous and I found I was extremely tired so recovered very slowly; since retirement recovery has become more rapid as I am far less tired and have greater control of my own destiny. I would say it is realistic to continue to work, however, one size doesn't fit all!!

I would also add that those around me have been extremely supportive throughout.

Good luck.

[PamOakes]

Hi there,

I too have just turned 55, diagnosed in February when my pain & stiffness had reached such a level that I could only describe is as rigor mortis without having died!

I had a great GP..........then moved house & had a rubbish GP, he wanted to refer me as he "knew nothing". Now I have a very experienced & knowledgable GP that feels I'll be better off under his care as he has no wish for anyone to try get me off steroids too quickly............he is wonderful!

I was working two 10 hour night shifts alone in a care home with 11 residents.......heavy & gruelling work & I really wasn't coping well, then my boss decided to give me all the cleaning duties on top of my normal work........I walked out.

Now I have a lovely little job in a nice little shop 3 afternoons a week........nothing heavy, no stress, therefore no problems & I love it. I think each job is so different & our coping capabilities vary as well plus the amount of stress varies greatly. Listen to your own body & how you're feeling, I'm so glad I didn't carry on struggling as now I feel so much better in myself & have stopped biting everyone's heads off plus I still have an income. Trust in yourself & your instincts. Wishing you the best of luck & a smooth journey through this.

Pam

[margiebell4 in reply to PamOakes]

Thanks Pam, good to hear you're sorted. I'm going back to work next week and I'll just see how things go. It's all a bit scary at first isn't it? X

[PamOakes in reply to margiebell4]

Yes it is! The fear of that pain coming back terrified me for ages! I was almost too scared to do much at first, gradually I've started to do more but your body seems to be able to say when it's beginning to have had enough, just listen to that.

A very very dear friend of mine was diagnosed with stage 3 cancer yesterday & that has put things more into perspective for me I think.

We are all here to support each other through this very strange condition & having this lovely place to moan or just ask questions and find some answers or just others who know how we are feeling is a great comfort

All the very best

[margiebell4 in reply to PamOakes]

I agree Pam it could be a lot worse. It's not as bad as some of the things I was imagining it could be before I was diagnosed. X

[INGRAM62]

I was just diagnosed with PMR. Have not started any treatment yet. Please tell me it will get better. I have only maybe one day a week i feel normal. They are scheduling me now for a temporal biopsy and I'm a little nervous about it. I am a nurse and work 12 hour shifts on the weekend but they really wear me down. They are doing the biopsy due to headaches and blurred vision. My vision seems to be worse by the day. Can anyone with GCA tell me how it feels so I can prepare myself.