Does anyone still work with PMR or has anyone managed to get any sort of ill health retirement?

[TiredScot]

I'd been becoming exhausted and getting lots of aches and pains for over a year before I got ny GP to take me seriously and was diagnosed with it 4 months ago. I have COPD as well (due to being a lifelong asthmatic, never smoked). When I first started on 15mg prednisolone I had immediate pain relief and energy for about 2 wks but the exhaustion came back quite quickly and now some pain in my hips and shoulders. I've been dragging myself into work for the last few months (4days a wk), now feel I really need to give up for my health but doubt I would get ill health retirement... any ideas anyone?

[PMRpro Ambassador]

You need to go to your union rep and your occupational health people and discuss it. Having both PMR and COPD and being on pred should give you some protection but I don't know enough to say how much. I know people with GCA who continued to work once they were well enough but were excused shift work and certain tasks. Some people have managed by doing work first, what must be done second - and giving up the pleasurable things. Unfair, hard - but if you have to work to feed yourself there is little choice I suppose.

It is certainly true to say that PMR gets better when you rest (not "doing nothing" type rest, but modifying what and how you do it). I worked with untreated mild PMR but I was working as a technician doing medical research alongside my husband and only part time. I worked after the PMR got really bad - but was a freelance translator. I didn't have to get up to get to work for a certain time by public transport - I just had to get to the computer in the same room!

It is becoming more of a problem - they now acknowledge that even 50-year olds can develop PMR and they are still well part of the work population. When women retired at 60 and only older persons were thought at risk of PMR it was a different matter. And with the plans to increase retirement age for state pension it will continue to be a problem - getting steadily worse.

[Angela123]

Hi there. I too am suffering the chronic fatigue thing which seems to go with PMR and horrible headaches which I believe are caused by prednisone. I have been off work for a month now and am now on sleeping pills as unable to drop off for more than an hour and I am wondering the same as you - will I ever be fit for work again? I am 60 but I won't get my state pension till I'm 64. I don't have any pain though, and it could be that you need to increase your dose to get rid of that. The pain must be dragging you down even more. My mother has COPD and I know how that affects her general health, so you could get some advice from your GP or citizens advice bureau as to any benefits you could claim, while having a chat to your employer about how they may be able to help. Good luck, TiredScot, I hope you feel better soon. Angela x

[Polywotsit PMRGCAuk team member]

No, unfortunately you are unlikely to get earlyretirement on grounds of ill-health, because the orthodoxy on PMR is that the average length of the illness is 2 years. Now, that is likely to be revised upwards (slightly) in the next set of medical guidelines. But some people do get better in the magic 2 year period. So what you should do depends to some extent on what you do and who you work for. I was fortunate to be able to continue working as an acedemic throughout the course of my PMR, but I had to drop down a grade (voluntarily) and go down from full time to three days a week. For ages I tried to hide my disability with PMR. Then I went to a workshop on disability, which was a revelation. I realised that I was one of those disabled workers (under the law) that the workshop was about. I "came out" to occupational health and got some support. The OH person even said to me "You know, you can go off sick if you need to". Just her saying that had a massive impact on my feelings of being able to manage the situation. I came out to colleagues too and generally got lotd of understanding. I realise that I was particularly lucky. The self-employed roofer I spoke with on the helpline was in a much worse situation. But if society wants older people to work ever longer and longer, employers are going to have to get used to dealing with workers with long-term health problems. The problem is how not to feel alone. Is there anybody at work you can trust to talk to about it?

[Skinnyjonny]

I was diagnosed last May after suffering for several months. I was put on 20mg Pred and am now down to 5mg. When I was really ill I couldn't lift my arms, press a light switch, and had trouble walking. I'm 52yrs old, male, Fire Officer and was ab active mountaineer, climber and marathon runner! I've returned to work (nearly full time again) following a modified phased return since last October. I maintain a daily stretching programme and I'm now swimming up to 80 lengths, running a couple of times per week, completing 5km Parkruns on a Saturday morning and been to the climbing wall again. I've maintained a daily dairy with timelines, and a Health & Fitness log. The main thing is to listen to your body, keep records, talk to friends and family, stretch daily and don't push the boundaries. Feel free to contact me.

[Skinnyjonny]

I also put together a return to work programme with Occupational Health which was led by myself.

[Runrig01]

Hi Tiredscot, I have had PMR since Oct 2011, but spent 14 months without treatment whilst they investigated because at 46 I was too young for PMR. I have worked throughout, although the 14 months prior to Prednisolone were very difficult and tearful at times. I work 3 long days a week as a nurse and my OH were very good. They made me excempt from night shifts, and I work a maximum of 2 days together. On the whole I manage with this , although when the pace is relentless I have to rest completely on my days off to recover. I am fortunate that my colleagues and manager are very supportive, and I could not manage without their support. Hope you find a resolution to your problem. Cheers, Runrig x

[estherdevers]

I think 15g is not high enough to hit the target, I started on 40g of pred and then came down gradually to 20, now going down to 10g. I have had side effects from the steroids, its a long strange and painful battle, until you find a dose that is manageble

[dimas62]

Hi Tiredscot. I imagine your COPD would be the biggest factor in possible medical retirement as this is a more 'obvious' illness. Must say that I am concerned about the whole work thing. I was only diagnosed with PMR / GCA in October and at 52 have many years before I reach retirement age! However my understanding was that the point of steroid treatment was to keep the symptoms under control which would enable me to work (taking into account the side effects of the steroids themselves!). I am front line customer services dealing with vulnerable and / or disgruntled service users. It is often stressful and I walk a fair distance over the course of a day but it is hardly heavy physical work - though tired is my default position! To be honest I have sometimes been a bit disheartened by some of the comments on here so it was good to read Skinnyjonny and runrig's comments on their experiences with working. If they can manage nursing and firefighting I can cope with dealing with disgruntled ciustomers!! My employer had been good so far and my immediate colleagues are fantastic as getting into work for 8.30 each day has become a bit of a problem...) Sadly I did have to take issue with an OH referral where the assessor said that PMR / GCA would not be treated as a disability under the Disability Discrimination Act. Firstly, the DDA has been replaced by the Equality Act 2010 (except in Northern Ireland) and secondly by studying the 2010 Act PMR/GCA definitely WOULD be treated as a disability. As such your employer has a duty to consider 'reasonable adjustments'. Unfortunately there is no definition of 'reasonable' but it is a place to start at least! I hope you are able to discuss this with your employer but as I said before I think the COPD may be more influential anyway than PMR

[polkadotcom]

With the aid of steroids, very helpful colleagues and management, I worked full time for 5 years with PMR and 3 years part time. I was in an office situation, although front line at times and it could be very busy and at times distressful.

I also had family support and on the days when I got home from work only to collapse on the bed and stay there, they coped. It can be done but it does take some effort.

[m33ary]

I still work as a locality(area) manager for a 'care' company. 4 years down the line it is still a struggle with pain and especially the horrid tiredness. It is difficult to make my boss understand and I have given up. I won't get a referal to OT from work as I don't have sick days. The only reason I don't have sick days is that if I miss a day I find it so hard to catch up. It is a difficult journey and I wish you well x