I don’t know what to do, so looking for a bit of advice. Was diagnosed with PMR two years ago after a stay in hospital. I went off sick at that time but was made redundant about a month later. That had nothing to do with the PMR, it was already on the cards. I was off sick 7 months before I started a new job in January 2020, two days a week. That increased to 4 days a week and then lockdown happened. I’ve been working from home since then, shielding, until recently. My hours were increased to full time during lockdown.
I’m now back in the office every two weeks for a few days and visiting clients at home a couple of days a week. So I’ve got I’ve got an hour drive to work and back a couple of times a week.
I am exhausted! Some days I’m in bed by 5.30pm until the following day. I can feel its having an impact on my mental health too. My migraines have come back as I’ve reduced the prednisolone and they are brought on by tiredness. Feel I just can’t win at the moment.
Is the fatigue enough of a reason for me to speak to my GP about time off work? I’m scared to do that because I know there is no quick fix and how do I know when the fatigue will stop and I’ll be able to get back to work?
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Spittal9
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Just looked at your profile - I would say that your PMR is very much alive and well and you are just not up to the increase in physical effort. If you have been able to cope with working from home during the shielding - is there no way you can continue doing that? PMR does come under disability legislation so reasonable adaptations are covered.
The commute is a one hour drive there and back with no walking. If I’m out visiting clients I’m driving between their homes, and meeting up with them. I’ve been told seeing clients face to face is a big part of my job so need to see everyone over the next few weeks. Obviously haven’t been able to do that until now due to lockdown.
The medication for the intermittent classification appears to be helping. Due to be reviewed this week. I try to walk our two dogs most days as know I still need to keep moving. I feel this is also good for my mental health, which I’m struggling with just now too.
Your employer is obliged, under law, to make reasonable adjustments to enable you to remain in work. You need to get together with the relevant people at work to design a working week that suits you. This may involve working from home, a change of working pattern/hours, equipment, someone driving you, rest periods, a re-distribution of your duties. Basically, creative ways of doing your job. This is a great exercise for everyone involved and an enlightened employer will be up for it. If there really are no options to change your job the perhaps it is early retirement on health grounds. You simply cannot continue wrecking your basic health like this.
I was shielding and working from home from March 2020 until the middle of May this year. I was then told as my job was supporting people in the community that I could no longer do that only over the telephone. I had to go back into the office a few days every two weeks and also go out on visits to clients. I was told my job can’t be done at home.
Not good enough! Supporting people begins at home. What is the group you work with?This is a non-negotiable employment right and yes I know that the real world strays from this quite a bit. Your health is precious and this job is hurting you.
I work for a local authority. I suppose the other thing that’s bothering me is I haven’t said to anyone that I’m struggling so much yet. I was going to say a month or so ago at my supervision and my manager said ‘is there anything else you want to talk about?’. I was just about to tell her and she continued ‘because I really have to go as I’m not feeling too good’. She had Covid and was unwell. So I never said anything.
I am imagining that a local authority will have robust equal opportunity policies, having worked for central government and experienced how seriously this is taken. Legislation will be taken very seriously unless something has gone very wrong. You will not be sacked for health reasons unless strenuous efforts have been attempted to make reasonable adjustments to accommodate the disabled employee.The conversation you need to have is difficult and was cut short because your manager was suffering herself and honestly, should have been at home if not for her own sake, for everyone else’s. Make a few bullet points to ensure that you remember to say everything. Is there an employee representative that you can take with you?
It may be that you can’t do your current job for the duration of this illness and this phase of it. They may be able to suggest another, less physically demanding job. Courage! You need to do this.
Without covering what Jane & Pro have already explained l found 11mg was always my sticking point while l was still working & often l could not face the drive back home at the end of the day but the evening l had to leave my car overnight & get my husband to come to pick me up was when the light started to dawn on me that the Job, PMR & Pred were not compatible!.....
I hear what you are all saying. Even after two years it’s still hard to accept. I’m not desperate to get off Pred. I know it is helping and I’m happy to be on it for as long as it takes. I suppose the realisation, even after all this time, is hard.
For me it was realising l could not do both ie Work & Hopefully Get Well! l was in the fortunate position that l could take early retirement. Perhaps you need to consider a period of Sick Leave & also ask to see Occupational Health as you need it on your Records that you have PMR & adjustments have to be made to accommodate you by law.
You really need to tell your Manager how you feel & explain you were going to tell her at your last Supervision but you could see she was unwell....
You can’t lose your job as that would be unfair dismissal but there are plenty of roles you could do particularly from home & this is where Occy Health comes in but you do need to get everything documented.
Thank you! I’ve decided to phone in sick tomorrow and say it’s because of my PMR. It’s not going to come as a shock to anyone that I’ve got it as I’ve been shielding all this time because of it. I’ll say that I’m going to contact my GP and I will let them know the outcome.
That is a good start. You will need feedback from your GP for your employer, so sensible to talk to your GP firstly. Your GP also should know about what to say to your employer.
I’m going to take it in small steps and right now not thinking of what might happen later. I intend to document everything to make sure I don’t forget things. So frustrating being back in this position but need to prioritise what’s important.
Are you a member of a union? They can help with health issues- but as others have said you need to make HR fully aware of your issues and your limitations - your line managers need to be supporting you not hassling you - and you do have legislation on your side.
Now that I’ve made the decision to phone in sick tomorrow and contact my GP I actually feel a bit better about it all. Some work I need to do tonight that I would have to have done in the morning but once that’s out the way I can relax a bit.
Just a thought while you are thinking about all of this. Are there things you feel you could do? I'm just wondering when you start the process if you can give them a positive first before the rest. ie, I think I could see clients once/twice a week but need to limit my office commute, or something like that. Just so they can see you aren't saying you can't do anything. Maybe the doctor can sign you off for a while and you can plan what you think you could manage during that time. I think working for a local authority goes in your favour as they have to be a benchmark for other employers out there.
I am struggling on my taper from 12.5 and everytime I get to 10 am straight back up. Trying to see how 11 is for a few weeks at the moment and it's definitely not ideal for me. Very interesting what Mrs Nails said about 11.
Good idea to start with what I can do. One of the problems is that I have an hour drive to work and always have had since I started this job a year and a half ago. So if I’m out visiting clients I’ve got an hour drive to get there, then driving about between them and then the drive home again. On Friday I was exhausted driving home.
Yes, I can see that is really tricky. I am not up on employment stuff as have been self employed for over 30 years. What you don't want is for them to say that you were aware of the journey before you accepted the job.I know it's an extra cost, but would a hotel the night before be an option?
Totally understand the exhaustion of travel and work. It took me nearly 6 months to realise that I was actually ill, and not just from work exhaustion. Hard to separate the two. Now I don't work anything like as much, I can totally see how I spend the last umpteen years completely pooped! Even with my diagnosis, I can do so much more than I ever did, because I wasn't driving 3+ hours a day on top of working.
Hopefully the doctor will sign you off and you can have a good think about what your strategy could be when you approach them. Good luck.
The drive wasn’t an issue prior to lockdown. The exhaustion has been awful at times even when I’ve been working from home bit as the driving in and it is horrendous. So I’ll be saying to them that even working from home has become difficult due to the fatigue.
I work for a local authority full time and pre COVID I was out and about all over the country. PMR came along and hit me hard. My boss asked for a certificate from the doctor to say I had PMR and was fit to work... they need to cover themselves should anything happen to you whilst working. Dr supplied this and asked if I wanted time off. I didn't.. I enjoy my work and it helps to keep me going. He ticked the box to say I was fit for work but with 'reasonable adjustments'. Some months later had a call from occupational health to see what support I needed... she said this call should have taken place as soon as I told them I had PMR. I am lucky as am able to plan my own diary so could make some of my appointments later in the day. They also provided a standing desk in the office. Now working at home since first lock down and all meetings are now virtual. Work often forget I have PMR and I have been asked to take on additional responsibilities - I have turned this down due to my PMR and not wanting to add any stress. Talk to your employer and I am sure you can work out a plan.
I’ve been working from home since lockdown in March last year. Virtual meetings and phones calls to clients and anyone else I needed to contact. Was provided with a desk, chair and laptop. The expectation is the now restrictions are easing I have to be in the office a couple of days every fortnight and out visiting clients face to face in between times. I’ve managed reasonably well up until now with the fatigue but now I’m overwhelmed by it. I had only been in the job a couple of months before lockdown so don’t think they are aware of how PMR affects someone.
To add to SheffieldJanes comments, your local authority employer has a duty of care around your illness.
I also work for a local authority and have seen the employee healthcare/occupational therapy people lately. Please make an appointment.as they will discuss with you what is causing issues and make recommendations for easing the issues. For me, this is structured breaks and an hour for lunch with no penalty on hours. This translates to a reduction of 5 hours across the week.
This might not work and if not I shall revisit with them.
Your illness fall into the category.protected under disability legislation and therefore they are required to take.this seriously.
Trouble is they won't offer up solutions. You have to take the lead and tell them you are struggling and have a good idea what you need before the meeting. Take a friend or partner to the meeting too. Brief them first!
You don't need to put up with this it it is another thing on the list to deal with for now. I asked for some time off from the GP while sorting this all out.
I’m hoping some time off will help but I know there will be no quick fix. Will ask to speak with occupational health and will try to work out some positives that I can go to them with.
I'm in my 4th week off after a run in with methotrexate (it didn't suit me but does others).
I'll go back next week but it's given me breathing space and time to work out the next steps. Don't feel bad for creating some space for you too. Make the appointment and get it recorded.
I understand your fatigue…my greatest complaint! I have learned to limit my activity to a point where I can do 1 thing..ie: shop, or haircut, or dentist, or car gassed…just 1 thing!…..then rest….if I can do another thing ..great. I shower, dress….rest. Try to keep the house up but hire help to vacuum, dust. I could never work. I am off Prednisone…left with very weak leg muscles. Good luck
I suppose the realisation is hitting me just how much PMR has changed my life. I’m two years into this journey and I am realistic that there is no quick fix. I had hoped to be able to continue working as before but maybe that is not possible and changes have to be made.
I just decided my health was the #1 focus of my life. Fatigue was taking over…..I remember lying on my couch thinking I hope the house doesn’t catch fire because I can not leave this couch. The “12 spoon” theory, which was learned on this site, is good to practice. I was diagnosed January 2020. The isolation with Covid worked for me….keep thinking that I am blessed…..it is not terminal. Naps are a good thing.
The Spoon Theory is an allegory to understand energy being limited in chronic illness and the fatigue that results. It is one of the links in this fatigue post:
I don’t have any advice as I am in the US, but wanted to say that it sounds like you have amazing policies there. We don’t have that here. If you cannot do the job I am pretty sure you can lose it in the US. And disability pay is a fraction of what you would normally make and only available if you cannot do any other job. It sounds like you have several options to start looking into! I would suggest increasing your dose a mg or 2 as well and see if it helps with the stress and fatigue.
We are very lucky in the uk regarding employment law and the fact that I’m working for a local authority will be beneficial to me I reckon. I’ve known people go off long term sick and they’ve been paid their full salary for the first six months and then half pay for the next six months.
I had thought about increasing my Pred as I’ve done this before when my pain has increased. I wondered if it would help in this case too. I’ve got someone from my GP surgery calling me this afternoon.
I am in the US as well. Here it is a different story as someone else has mentioned.My primary Doc diagnosed me thank goodness after a week when labs came back and symptoms were discussed. He took me out of work for 6 months immediately. Disability pay in the US is much less than what you earn normally. Didn’t matter. I was in so much pain that at the time I was finding it hard to walk, sleep and so many other symptoms. This forum set me straight related to the severity of this PMR. It helped me learn to cope, to understand that this is not a race. It must be acknowledged and You must rest. It is essential. As you feel better, it may take months then as you taper, it is still seriously a series of back and forth with rest being a must in between. I hope this helps.. you will feel better. Prednisone is a lifesaver when u need it. I certainly do ! Good luck! You can do it!!
I’m in no hurry to come off Pred. I just have to think of how bad I felt when I was diagnosed two years ago. Don’t want to go back there if I can help it!
Hi Spittal9, my acupunctuist recommended thumping both sides of my chest just below my collar bone with my fists, 3 times. Apparently this activates the K27 kidney point. I know it worked for me. I did do it several times a day on the days I was extremely fatigued. Good Luck. Anne
Saw my GP this afternoon. His suggestions were: a possible flare of the PMR, sleep apnea causing lack of sleep, diabetes, issues with my cholesterol or anaemia. So lots of blood taken including some to check my kidneys and liver. So if nothing else I should find out what I’ve not got lol. He’ll go over the results with me in a weeks time, said I was right to call in sick and said there will be no issue next week in giving me a sick line if still the same.
What you describe is soooo familiar. If I do 'too much' in a day it's always my lower legs that hurt most. It feel like acid is running through the veins. I think it's because the lower leg muscles work hard all the time just to keep us balanced upright.
The pain in my legs I now know is caused by my recent diagnosis of intermittent classification. So pain on walking due to the narrowing of the arteries in my legs. This was reviewed today and the medication I’m taking for that seems to be working. Nurse recommending that I also take aspirin and another medication to help with this.
The nurse has all my blood results from yesterday. So, not diabetic, my liver and kidneys are fine, not anaemic and my ESR is low. So at least I’ve not got something else to worry about, yet…
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