I have just returned to work after two months off due to chronic fatigue. I work three days a week. My work involves driving one hour to the area I work in, my office base is there, and visiting clients in their homes. I’ve had three occupational health assessments in the past year. I was recommended by Employee Support and occupational health to get the Union involved as it looks like my employer thinks once I’m back at work everything is back to normal.
I’d like to know what others think about possible reasonable adjustments that my employer could make.
Written by
Spittal9
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I worked in a primary school, mornings only, and also had the involvement of occupational health to facilitate my return to work after almost a year off sick because of my PMR.
My Headteacher and I agreed on a plan of action based on the advice and recommendations in the OH report.
These included:-
1)- a phased return. Even though I only worked mornings, I spent
3wks working Tues & Thu.
3wks working Mon, Wed & Fri.
3wks working Mon, Tues, Thurs, Fri
2) - I was allowed two 20min breaks during morning, to be taken when I felt I needed it.
3) - light duties.....so no lifting heavy resources, no strenuous or physical activity
At the very least, I feel you need (and are entitled to) a phased return. You need to build up your hours gradually so you don't overdo it.
In a nutshell, any modification or change that facilitates an easy, comfortable, and most importantly, manageable return to work, must be seriously considered and executed when and where possible.
Your senior management team have to work with you to ensure you are assisted in any way possible that allows you to return to your job.
Hi Kendrew, my phased return after two months off consisted of I full day in week one, 2 full days in week two, annual leave week three and then back three full days on week four.
During Covid restrictions I was initially shielding and working from home. I continued to work from home and only started going out to visit clients again about a year ago. The first two OH reports advised that I should work from home where possible. For my latest OH Assessment my manager wrote that working from home is not an option. Although now the Union have got involved management have said I can work from home one day out of the three, but must be prepared to travel if need be on that third day.
I also had time off during covid to shield. I couldn't work effectively from home so I was incredibly lucky to have such an understanding Headteacher.
I actually made 3 attempts to return to work over a three year period but each time, within 6wks, my symptoms were returning and I was feeling completely wiped out again.
Eventually I had to take full medical retirement, which at only 63yrs of age, was absolutely not what I wanted to do.
Its important to be aware that even with the most understanding employer and all the necessary workplace interventions in place, it may sometimes not be enough to allow you to realistically & effectively return to work.
I'm pleased you seem to have agreed on a regime that appears to be working for you though.
You are the best person to design your job around your particular needs. This would include your working pattern, hours and breaks. Possibly assessing how much of your job can be managed working from your home and whether anything can be achieved over the Internet zoom etc with your particular service users/clients. Could someone work with you and possibly drive you to locations? You really need to think outside of the box. A complete job re-design. Would any equipment be of use to you, furniture, computer adaptations, recording devices. Once you have gone through this process you may come to the conclusion that you need to retire on health grounds. These should be the most advantageous terms for retiring. This process needs to be gone through as part of your employer meeting their legal obligations under the Equality Act and this being seen to be done. Maybe your job could be stretched over a longer period so that rest days can be built in. I have gone through this period with employees in the past. I would need much more information to give you specific ideas. When these interviews work it is good for the company and very satisfying all round. A true collaborative achievement drawing on everyone’s best creative skills. Good luck, you are worth it. Go to your next meeting armed with lots of ideas, and your union rep. And or a supportive friend or manager.
Hi Sheffield Jane, thanks for your reply. Although during lockdown all my work was done from home on the phone or via Teams, I’m now being told my role is face to face and I need to be out visiting people in the community. I am being allowed to work from home one day out of the three days I work bit I’ve been told I must travel if needed.
I do understand where my organisation is coming from. They need someone who can do the job that is expected of them. I just feel with them it’s all about me returning to work as normal. I said to my manager the other day, with my Union rep there, that I felt the questions she wanted answered by occupational health were not about how they could support me to do my job. They were just so about is she fit. One question was how was I going to get to work in the winter, as I live an hour away from work. The Dr said he couldn’t answer the questions she was asking as they were not health related but organisational issues.
An employment tribunal for dismissal or constructive dismissal on the grounds of disability, has the power to award unlimited compensation. They need to brush up on basic employment law.
I certainly hope it doesn’t go down that road but I’m glad I’ve got the Union involved. Both Employee Support and OH recommended I contact the Union. That in itself made me feel anxious and I feel I’ve probably got a fight on my hands.
Why are you getting fatigue if you're steroids are at the right level for you this should not happen..How many mg's are you on exactly ? You need to be on a level so you don't ..I have been on a maintenance dose for many years now and if I go 1 mg lower I have a flare and the fatigue is back..Have you had your blood tested lately..? Have you spoken to your GP or Rheumatologist about it ?
Well with fine tuning I don't suffer from fatigue at all since I've stopped tapering now and stayed on a maintenance dose its been that way for years now ..you have to find your own level and you will eventually xx
Good luck with you're journey you can achieve this but I had to fight to stay on a maintenance dose but we'll worth it as life is good ..Try not to and avoid stress where you can as that often controls PMR .. xx
I find I need the physical as it relieves the stress I walk miles with my dog ..I think we need fitness more than most but you will find what's right for you on you're journey ..I have been on mine many years ..Be calm and listen to your body xx
“Well with fine tuning I don't suffer from fatigue at all since I've stopped tapering now and stayed on a maintenance dose its been that way for years now..”
I would say that your Pred dose is enough to “top up” your natural adrenal activity. So when you go below the dose doing that you do feel fatigue returning..but it’s adrenal related rather than PMR related.
Think with Spittal19 and others the fatigue is PMR related. Slight different scenarios
No I was told by my Doctor who is a Rheumatologist that it was my PMR and that my levels need to be kept right in order for me to not have the pain and the fatigue it just needs to be the right amount to balance maintain it ..He is fab ..
Quite. That is my understanding. It is the inflammation that is controlled with right dose but there is a whole host of other things that can impact. Part of the problem with fatigue is that you don't always know when it will hit you.
The pred does not usually make much difference to the fatigue - it is mostly a component of the underlying autoimmune disorder which causes the inflammation - and the pred is to manage the inflammation, it isn't a cure as it has very little effect on the a/i part. Everyone is a bit different - and for some people the pred even contributes to the fatigue so there are no hard and fast rules.
I’ve been very lucky on my PMR journey in that the Pred controls my pain very well. The fatigue has always been there to some extent and at times has become unmanageable. I personally feel the Pred contributes to the fatigue as well. I am really careful, most of the time, not to overdo things. I walk our two dogs daily and that’s really good not just physically but mentally too. I try very hard to look after my mental health but I’m feeling stressed regarding my work and I know that won’t help.
I also know that I’m able to come on here ‘for a moan’ and people will understand.
Not true for me if my levels are kept under control by my pred I do not have a flare therefore I have no fatigue and it has been so over many years ..It all has a knock on affect its all down to your levels xx
It may not be true for you - what I am saying is that it is different for everyone so because YOU can get it pretty much perfect doesn't mean everyone can. A lot of patient get very upset at reading what someone else can achieve but when they try it just doesn't work and they feel a failure. That starts with a doctor's expectations of them that as soon as they start taking pred they will be back to their normal pre-pred life. Or that PMR burns out and they will be off pred in 2 years.
I have the PMR pain well controlled - but at times I have needed really high doses of pred to be able to function well enough in my role as a sole carer. But fatigue did pose a problemat any dose. I also have myofascial pain syndrome - given access to the right management I was doing great with both PMR and MPS. Until Covid appeared and the Pain Clinic went into abeyance - I still did pretty well for 18 months until my husband died and for a few months afterwards. And then the proverbial hit the fan - the last 5 months have been what can only be described as painful!
There is really no need to put it in capitals I do understand and I never said its for all... I've had alot of years of finding out and ups and downs and if it helps one person to not have to go through months and years of trying to taper to get off Pred thats great some people can't do that either ....I also said that stress can also bring it on and make it worse as ive also had horrendous times that made everything worse...I'm not out to hurt or upset anybody..Just telling my story the same as you do and many others ..
I do beg your pardon, it was for emphasis which you wouldn't hear without voice and replies aren't just for your benefit they are for others as well who maybe don't know as much as you and who don't have as accommodating a rheumy as you obviously do.
I’m currently on 10mg. I was on 14 mg in February when I saw my new Rheumatologist. He suggested to continue tapering slowly and said the lower I get the harder it would be, and to take it even slower then. I managed to get down to 7.5mgs but by that time pain had returned and the awful fatigue. I reckon I was okay I until I tried to go below 10mg. I saw a GP a few months ago and she said I should be on a much lower dose as I’m also taking methotrexate. For now I’m not reducing anymore.
Yes you have to do it very slowly and its a bit up and down but I found my level and even 1 mg lower and I flared and it all came back ..My maintenance dose is 4mg and I'm staying on it for life now as life is good xx
Your GP is wrong - MTX doesn't work for everyone so it is not automatic that you will get to a lower dose just because you are on it. For me it made pred effects I had never had appear - and the aches and pains were quite as bad as untreated PMR!!!
I agreed to go on the MTX when my old Rheumatologist suggested it last year, in an attempt to reduce my Pred. Is it working? I really don’t know but I have my doubts. I’m due to see my new Rheumatologist again next month and I’ll speak to him about it. I started on it in December. I feel that I would be at the same dose regardless of I was taking it or not. The recent return of PMR pain was enough to make me realise I had over shot what I needed. I’m in no rush to get off the Pred.
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