Work after PMR

[Anitao2]

Hi everyone am new to this site have had symptom of PMR since March this year but diagnosed beginning of July by which time I could hardly walk Can anyone advise me on going back to work I am a therapist working with people with brain injury the work is very heavy and at the moment I feel exhausted does this pass?

[suzy1959]

Welcome,Anitao2!

I used to work for Headway a long time ago, so in the same line of work as you then. More recently I have been a self-employed counsellor in private practice. Because I have had PMR for 6.5 years, I have finally taken the decision to retire as I haven't been getting any better and wonder if the ongoing stress of hearing distress etc. is not helping, plus, I think I have now got compassion fatigue, having been in the helping professions all my life. I was 52 when I got this, and now just turned 59yrs.

I was in denial up to this year really, cutting down on work whenever I was feeling rough, but I kept hoping that the PMR would pass and I could continue the work I loved- no such luck! I would add that we are all different, so your experience may not be the same as mine!

[Anitao2 in reply to suzy1959]

Hi thank you for the quick reply to be honest I have no idea how I am going to continue my job unless the way I am feeling does change and having looked at a lot of the posts on this site it does rather seem that people go on to have this condition for several years instead of a short time as the NHS advice leaflet I was given says I do hope you enjoy your retirement and it's as pain free as possible

[PMRpro Ambassador in reply to Anitao2]

The median duration of PMR is 5.9 years - in all my years on the forums I know of maybe 2 or 3 people who got off pred in 2 years. The fatigue element is perhaps the longest lasting - that is a feature of the underlying autoimmune disorder that cause the symptoms we call PMR, Even now I will have the occasional hitting a brick wall experience and all I can do is stop and go to bed.

This might help explain how pacing and resting is essential:

healthunlocked.com/pmrgcauk......

If you have a doctor who doesn't make a big thing about reducing the dose as quickly as possible you might be able to work - but people who work tend to need a higher dose to be able to cope. I worked all the way through - but I was self-employed, worked from home as a translator so all I had to do was get from the bed to the computer and I chose my hours. It was still hard and there was no way I could have commuted to work and done a day's work!

[Anitao2 in reply to PMRpro]

Hi thanks for you reply it does seem a struggle for most people to pick up where they left off regarding work Will take some time to think things through maybe a change of job in order Best wishes for the future x

[SnazzyD]

Whilst nobody can tell you how this journey will be for you, it is a long game and not something that will pass in a hurry. For whatever reason, your body has decided that certain parts are the enemy. Who knows why; stress? Infection? Genetics? Whatever it is, it takes time and self care to go into remission. I intended to go back but it became patently clear in time that it wasn’t going to happen if I’m to get better fully and may even be injurious. This can seem like an end to life as things usually have to change or be given up. It can also be the start of a new journey of new opportunities and discovery, albeit against your will initially. I had to stop working as soon as I started Pred last year, after 30 years of being a care professional at the age of 54. I grieved on so many levels and some days it still gets to me, but I can now see the positives.

What I,m trying to say is that you need an open mind and this isn’t something to get through by pushing yourself. Some do keep working but I’m not sure what the long term outcome is.

[Anitao2 in reply to SnazzyD]

Thank you for the advice I have decided to take more time off work and think things through Have got another 7 years before I can retire so maybe need to look at something a little less demanding wishing you all the best for a pain free future x

[Carol-mc]

Hi Anitao2

I was diagnosed with PMR in May and have been off work since then. Now I need to decide whether to return or give it up. I work as a mental health advocate, both with people who are sectioned and also in the community, it can be extremely stressful, I meet a lot of lovely people and the thought of retirement worries me a lot, especially financially. I have found the fatigue has lessened somewhat as my predisalone comes down, but we are all different, and I dread trying to cope with a full day of work & travel. I wish you all the best, only you can make the decision, it’s not easy, take your time and think everything through, your health is very precious!

[Anitao2 in reply to Carol-mc]

Thanks for The advice hope all goes well for you x

[sewinggirl]

I understand what you're saying. I'm a teacher, and start back tomorrow. I work with elementary aged students, and it wasn't easy last year. I'm hoping it will be better this year, but time will tell.

[Anitao2 in reply to sewinggirl]

Hi good luck with return to work take care please let us all know how it goes xx

[Rose54]

Hi

I had 4 months sick at the beginning of this journey nearly 3 years ago returned to work full time.

I work visiting people in thier own homes and dealing with any problems thay may have .

May last year I was down to 8 preds had a flare and has taken over a year to get back down to 8 .

May last year I cut my hours down to 5 a day after having 2 months off sick have been doing fine but sometimes the fatigue is unbearable and I find I just need to sleep .

I would take as much time off as you can and then do a phased return to work and see how things go.

I retire next June so hope to manage till then

PMR is difficult to get State Benefits for as thay say it responds to Medication so thay expect us to claim JSA and look for work .

That is the only reason I am still working, just be kind to yourself not something we are used to doing .

Good Luck

[Anitao2 in reply to Rose54]

Thank you Rose 54 it really helps to get opinions from people that have experienced this and along with all the other messages I have received it has helped me to decide not to rush back to work although feel under pressure to do so I do think this is not helped by the leaflets given out by NHS on this condition that say symptoms disappear after 3 weeks of steroids ! It's quite clear this is not the case for anyone on this site May I wish you good luck and happiness for your future retirement and do hope it's pain free xx

[PMRpro Ambassador in reply to Anitao2]

The symptoms often DO disappear after a few weeks on steroids - providing you are on a high enough dose. I have no symptoms really but I have never compromised on my dose.

It is a very different matter when a doctor insists you must reduce to a dose that is not enough to manage the symptoms - and that happens a lot. Anyone who needs to work will also usually need a higher dose of pred - and then you are in the realms of the pred affecting you in various ways. Higher doses may affect judgement - it is a get-out for jury duty for example - and may cause fatigue in addtion to the disease fatigue which is rarely improved by the pred. The leaflets are mostly totally unrealistic.

[Anitao2 in reply to PMRpro]

Thanks for the advice It is a concern for me as I am at risk of infection from the clients I work with may need to change the type of work I do As for the pred the doctors already tried to reduce me down and it causeductive a flare up they increased them for 2 weeks and reducing again on Thursday so not sure what will happen Am not in a position to give my employers a return to work date at the moment Hope all goes ell for you on the future x

[PMRpro Ambassador in reply to Anitao2]

Have they also reduced the size of step down? How big was it?

Why are you at risk of infection from brain injury patients?

[Anitao2 in reply to PMRpro]

Hi step down is 5mg so 1 tablet The risk at work can come from some clients attending the service with infections due to their learning difficulties they don't always have a good understanding of personal hygiene so this in turn can be a risk to staff especially if immune system is compromised

[Rose54 in reply to Anitao2]

Hi

I visit people in thier own homes some very unhygienic I have 2 Autoimmune illnesses and tend not to pick up infections .

I feel as long as you are very careful have a healthy diet you are no more at risk then anyone else .

This may be just luck

[Marilyn1959]

I am a year in to PMR and work part time, flexible hours. I can just about manage 50 hours a month, but only because of the flexibility element. I can and do adjust my pred if I need to work a long stint I. E. Days in succession, though the adjustment is short term and no more than 1-2mgs. I couldn't imagine having a daily work commitment since the fatigue is so unpredictable. If I then had to go off sick because I wasn't up to it I would also then feel guilty for letting people down. This would cause stress resulting in conditioning worsening! My job, being flexible, allows me to go with the flow whatever that might be. I am very lucky, but it does mean I am reducing pred slower. Your employers, if in the uk, will by law have a duty of care towards you (regardless of any NHS leaflet!). Under that duty of care is a duty to make reasonable adjustments. Since your work is both physically and mentally taxing at the best of times, can you negotiate with your employers a different role with flexible working?

[Anitao2 in reply to Marilyn1959]

Oh thank you so much that is encouraging Am going to stay off a little longer as only just starting to reduce steroid and need time to see how it goes will make an appointment to speak to my boss thanks for the advice hope all continues to go well for you x

[Marilyn1959 in reply to Anitao2]

You too x

[JulieR2 in reply to Anitao2]

Hi there I have been lucky and I managed to get back to work full time after a month off. I was diagnosed in Feb 2017 and am now down to 2.5 mgs of pred. It isn’t easy but I have managed it mind you I have spent a fortune as many have on every type of vitamin fad and phase apart from the pred and the fact i khave someone who does cleaning and ironing for me I have had a massage every 2 weeks to keep me going! It’s helped as I drive a lot. I have now started reflexology which helps me relax. So I balance my life so I can work! Mind you have a count down to retirement app for the days I am really struggling....