I need some help in how i manage my PMR in terms of work. I am 54, had PMR for about 18 months now. Tapering down on Pred but still suffer with the pain in upper back, shoulders, hips etc. Bit slow walking as get back pain and pins and needles.
I work full time in central london, commute and all, managing a team of 22.
I am wondering whether I should speak to my HR team about my PNR? I sometimes feel like I am slacking and want to have my company understand the challenges this condition brings especially as it can go on for so long.
Thoughts?
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LisaMun
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Yes, I think it would be fair to both you and your workplace for you to have this discussion. Otherwise I fear you will reach a breaking point where everything goes pearshaped. There may be some quite simple things which can be done to lower the stress of work. You also could consider what you can do (or more to the point, not do!) at home to allow yourself lots more recovery time between one workday and the next.
Do you drive yourself to work? If so, is there a viable alternative?
You really should have got HR and line management on board right from the beginning (although I know it’s not always easy) - and they should be ensuring your working conditions accommodate you and your illness.
I imagine that commuting into London daily with PMR is a nightmare at the best of times. It is possible for you to work from home on occasions? That would make it a bit easier.
In a word, yes. In more than one word, what is it about PMR/GCA that makes people feel they are not deserving of time for recuperation fitting for any serious illness? You are taking a powerful drug because your muscles can’t get enough oxygen because your body is attacking some of its arteries. Your workplace needs to take this seriously and you need to take your well-being your priority. People on this forum often say they have no choice but to work and struggle on, either because it defines them, or they can’t afford it or both. Sometimes work is possible but with some big changes. The trouble is, bodies tend to call time eventually so I’d say plan for the long haul this is, with plan A, B and C.
What dose are you on and how long have you been getting pain for? We’re you ever comfortable?
Hi LisaMun, I salute you on your commitment to you job inspite of all the challenges you must be facing. I told my boss about my condition as soon as I had a definite diagnosis (actually she knew something was wrong before), bus she is a friend and exceptionally lovely, I work part time anyway, half of that from home, so I don't find it much of a struggle to work. In fact even when I was at my worst, I found working perfectly manageable. Getting to work was more difficult, so I am grateful I don't need to do it every day and I don't usually have to do it during the rush hour. Only you can tell what you can share with your HR people, but I would imagine that talking to them may be helpful if you want to ask to do some of your work from home or if you need something very specific that you will find helpful (like adjusting your workstation to ease any back strain or starting work late to avoid the rush hour crowds). I find that even when you tell people of your condition they tend to forget about it as long as you seem fine to them, but if you have medical appointments to attend or need to pace yourself when you are feeling particularly tired, at least you don't need to feel bad about letting them down if you warned them in advance.
I wish you good luck and a smooth path to recovery.
I was offered a very prestigious job a couple of months ago but had to turn it down because it was in london and travelling from the south east every day combined with the work load would have been too much. It really is hard to work full time especially with commuting with pmr. You definitely need to speak to HR and see what they can do to help, like maybe going part time. Let us know how you get on. YBB
I would talk to your HR department, I am a Occ Health nurse they need to know, do a bit of research and take some written info with you, if you need adjustments decide what would help you the best, make them reasonable adjustment that your work can support, for your health please dont leave it . i have had PMR for 11 months my GP was quick to diagnose, side effects from the steroids are horrendous, so not only coping with tiredness, pain and muscle fatigue you have the effects of the only treatment available for PMR. i worry that it may reach a point that you end up being spoken to as you struggle and your workload drops off ,if your work knows your diagnosis hopefully they will be supportive.
You should definitely speak to HR and your Team about your PMR.
Perhaps take in the helpful guidelines about the condition to show them all with a little talk explaining what you need to do to help you continue to be productive during the day
( balancing activities with mini rests , needing breathing time after you arrive at work because of the Commute , needing to delegate some more physical duties to others , getting extra prepared for meetings or presentations and possibly needing more prompts for information as you can experience brain fog in more pressurised situations , better and more comfortable seating and work station or area to work in away from draughts or in a temperature controlled area , and greater employee/ employer understanding if you occasionally need things repeated or you seem more sensitive or a bit " snappy").
Asking if it's possible to get HR to organise a Occupational Health and Safety Assessment to give directions and recommendations of better work practise, office equipment etc. to make things easier for you to work well .
Explaining that you may need extra time off work for Doctors appointments or Physio , or that you may have to take sick days in the future to cope with tapering and Fatigue as you progress and requesting it is put in your Employment File so it will be treated with Understanding or Dispensation.
It would also be good to see if you can do part of your job from Home to reduce your days if commuting or have the option of Flexitime.
If you find things more of a struggle in the future having these things set in your records will also help if you find you need to reduce your working hours fir a certain amount of time , especially if you find your Pain is not controlled and you are finding recovery much harder because you are involved in too much activity.
However, what you describe could well fit with myofascial pain syndrome and spasmed back muscles. It is more common than usual in patients with PMR. I manage mine with therapeutic massage and a wonderful pain clinic here where I live. In the UK I found Bowen therapy very helpful together with Pilates and Iyengha yoga.
As a manager, you already know that the best way to discuss a problem with management, HR included, is to define the problem(s) and propose solutions(s).
If a different office, desk, chair, computer monitor, keyboard, mouse or other equipment would help you, ask for it. If your hours can be flexible so you can avoid the rush hours for commuting, and it would not interfere with how your department would function, ask for a start time and end time that would be easier for you. (Consider whether 4 ten hour days with a day off during the week would work for you and for your department. Be available by phone during business hours. Consider whether working from home some days would work for you and your department.)
As to your workload, if you haven't already done it, start cross-training your staff so if you are out of the office for any reason, at least one other person - preferably two - can act in your place. You can delegate a lot of your work to other people. Match their talents and skills to the tasks and responsibilities you want to delegate to them. This can be a set of tasks per person or just one per person. You know your department's work processes the best, and you know your staff's capabilities the best. Make a flowchart of who would do what in your absence. (I find this works best if they also have a person or two to whom they can delegate work while they're covering for you.)
Can you do some meetings via telephone conference instead of attending? Can you be available to your staff via phone if they need you and you need to stay home? Can you designate one or two of your staff to be the clearinghouse for going to your boss for decisions or instructions if you can't be reached? Can you split your lunch hours so you can take a mid-afternoon break or leave early?
As to your medical appointments, let everyone know ASAP if you're going to be out of the office. Make sure your boss has as much notice as possible, and make sure your key staff members know. Of course, unless it is an emergency, whatever deadlines would fall on or nears those days should be dealt with in advance. Plan it out as though it's vacation time.
Talk to your staff and tell them what's going on with you. You might be very surprised that their response will be to step up and help out. Make sure that if you're delegating responsibility that they know this enhances their own careers. Keep track and point it out in their performance review, and make sure you mention it to your boss.
Finally, be sure to express your gratitude to your boss, HR, and your staff for their help and support. Make sure you do it often. Report to HR how the adjustments are working. Report to your boss all the good stuff your staff is learning/doing.
If you have a good employer then a chat with HR should be mutually beneficial. They are obliged by law to make reasonable adjustments for staff with disabilities. It may be that you could do some of your work from home with suitable kit, for video conference/ phone meetings etc. It may be possible to re-write your job description, so that the more problematic tasks fall to someone else. Make some notes for yourself on what would really make a difference to your working day - in advance of the meeting. It could be an adjustment to your hours.
We live in Yorkshire and my husband manages a sizeable team in London. He only travels to London about twice a week and works from home a lot. It works well.
PMR is a disability under the Equality Act 2010 so you should definitely talk to HR and I would also tell your team. The company has a duty to make a reasonable adjustment which could be looking at the areas of your work or travel and make some changes to help. I work but I do some work at home first thing and then have a longer lunch break so I can rest properly . If I keep going all dayI pay for it the next! I am HR will help.
I’ve stayed working even at my worst but I don’t manage anyone but myself. At the worst I would leave an hour early to go home and rest (but came in earlier) so kept up w all my work. I have to work (£ and got to keep busy).
I admire your commitment to work whilst trying to managing this dreadful condition. I’d urge you not to underestimate PMR; it’s a bumpy road and a bit of forward planning is often essential if you’re going to keep fatigue and pain levels down.
Please don’t be concerned about telling your employer. Whilst PMR isn’t life threatening, it tends to be life changing and the sufferer has to make numerous compromises every day. It’s a serious, long term auto immune condition which affects your ability to carry on as normal. You’re covered by legislation which requires an employer to make ‘reasonable adjustments’ to help you. But they have to be aware of your condition. There are numerous small things which could help and it may help you in future too. This Acas paper gives a helpful overview...
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