Importance of rest

I was diagnosed with PMR last fall. Just as I was about to go off prednisone, I was diagnosed with GCA. I'm down to 5 mg of prednisone again. I have a desk job but every work week I get so tired. My neck and upper back hurt and I have headaches. By Sunday I start to feel better again. Then the work week starts and it all starts over again. I'm also probably doing too many other things (school, church, etc.). Is this a common problem? I'd really love to get off the prednisone successfully this time and I'm considering if I should drop some of my other activities so I can rest and make it through the work week better.

[jinasc]

To help getting an answer to your question...........please fill your profile in by following this link

Thank you.

BTW I had GCA and from reading your short post I would say, without knowing anything else, you should change your livestyle.

healthunlocked.com/pmrgcauk...

Ie Date diagnosed with PMR when where you diagnosed with GCA etc.

[EdithWales]

I think you have answered your own question. You have a serious illness and of course you are doing too much. This is time to look after yourself. With a diagnosis of GCA I wouldn’t be rushing to get off prednisolone.

As jinsasc says we can help you more if we have better information

Take care

[Hidden in reply to EdithWales]

I thought I had filled in a profile when I signed up but I will try again. It just seems like work is the biggest stress, which I can't stop. Most of the other things I do are for fun so I hate to stop them.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

You will have put some info on there, but the bio is the bit that we see - and is of most use - at the moment it just says "Hi I am TeddyZ" which is HU's default setting.... just make sure you save it when you exit profile...

thanks..

and agree with others you need to adjust lifestyle as much as is possible - and you have reduced much too quickly...

couple of links on pacing yourself and and adrenals - which are probably struggling at the moment which all adds to fatigue -

healthunlocked.com/pmrgcauk......

healthunlocked.com/pmrgcauk...

and...perhaps you should read, or re-read this on genera information about PMR/GCA

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Living with PMR and GCA is a juggling act and it is all about pacing and resting appropriately.

This post is about that:

healthunlocked.com/pmrgcauk......

I also think you have answered your own question - you have to prioritise and decide what is most important and also know your limits and stick to them.

[piglette]

PMR and GCA are life changing. They are in control so you have to listen to what they say or else!

[Koalajane]

seems to me that you are reducing very fast as well

[Elispeth]

Please do take good care of yourself! In my own experience rest is the most important factor that provides me with a decent enough quality of life. I have tried everything else believe me 😒!

[KASHMIRI1]

Good morning l have GCA and can't work full time or anything like it. Ii found l need rest most afternoons. I can relate to your headache and upper body pains. If you can l would try to step back from some things. Can you work less or be if sick?

[Hidden in reply to KASHMIRI1]

Work is fairly stressful right now. I've applied for a different position that I think will be better.

[KASHMIRI1 in reply to Hidden]

Good luck with the job application l hope it works out for you

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Are your employers fully aware of your PMR?

In the UK they have to make necessary provisions for you to do your job (under the Disability Act) - not sure what the situation is in US, but maybe worth looking into.

[Hidden]

It's quite possibly your work which is causing your problems rather than your other activities, which from what you say above sound relatively light. Sitting at a desk for many hours each day is equivalent to sitting in a stress position and can lead to all kinds of issues, particularly with neck, shoulders and back. Do you use a computer at work all day too? Constant use of a computer mouse can lead to stress injuries like carpal tunnel syndrome and what I personally like to call "Mouse Shoulder" which is one of the delights I suffer from. It's a chronic injury to the area around my right shoulder blade caused by too much repetetive 'mousing' many years ago and tends to manifest at it's worst when I use the mouse for too long or drive a car for more than about half an hour - must be something to do with the seat position in the car I think. My suggestion for what it's worth is that if you can get your boss on board, take a little break from sitting at your desk and get up to walk around for a few minutes every half hour or so and maybe try some gentle stretching exercises at home every day. It only takes a few minutes and can work wonders.

Good luck and take care.

[Shiv14 in reply to Hidden]

Have you tried switching to a track ball mouse. You no longer need to move your arm, you use your thumb only. It sorted me out. It takes a little getting use to and you may shout at it and call it stupid a couple of times but after a day or two it’s great.

[Hidden in reply to Shiv14]

I've never even heard of that but I'll look into it as a possibility. Thanks.

[Hidden in reply to Hidden]

I do have a sit stand desk. I set a timer so I stand every hour for at least 10 minutes. I'm getting better at taking my 2 longer breaks away from my desk every day.

[agingfeminist]

This is so tough but you might have to decide on priorities. I cannot give up work...without my income I would not be able to survive. I am not in the UK, there aren't safety nets to catch me here as I run out of money. So my focus is to continue working...fortunately online. I work and then I rest/sleep...and that way I can just about keep going...I love my work so that helps. Sometimes people talk about QOL. Work is my life. It suits me because I would like to be able to live long enough to hopefully emerge from the PMR tunnel. Giving up work would give me, at best a shelf life of a few years.

Could you work from home? afford to reduce your hours? These are not easy decisions and everyone has different priorities (and also different personalities). I live alone and my work colleagues are wondeful...it has been easy to make work the sole focus of my life. But it's not for everyone.

[Broseley]

My advice would be to see whoever is in charge of health and safety at your work and tell them about your condition. They should be able to help you get appropriate equipment for your needs, such as a foot rest, suitable adjustable chair (it's worth trying a few) wrist rest, screen filter etc. They should record your needs and you should be allowed to factor in rest breaks.

[Hidden in reply to Broseley]

I work from home most of the time, have a sit/stand desk, and a foot rest. I could use a nicer chair though. I might check with the work nurse after I see my rheumatologist again next week.

[Groovykindoflove1992]

I work from home. I only work 2 days a week, but have been working an extra 3rd day for the last 18 months. I work Monday, Tuesday and Wednesday. On Thursdays I never plan anything. It is my day of complete rest. I have a nice long soak in the bath and have an afternoon nap etc. I have learned the hard way that if I don't have this day of rest, then I only just recover by Sunday, ready for work again on the Monday. I work on the sofa which leans me ever so slightly backwards as I cannot sit upright for all that time in an office chair. I can rest my head back for a moment when I need to. I have a 'v' cushion across my lap with my keyboard on so that my elbows are supported when typing. I worried that long term this wouldn't be a good position, but I got hubby to take photographs of me in situ to show my rheumy and physio, and they both said it was fine if I am comfortable, and just to make sure I get up and move around and stretch a few times. Work are very supportive. My hubby works at home too, but even though he has no health issues, he still moves around the house with his laptop, from the kitchen table table to the sofa, then up to one of the kids' desks with an office chair. I sat in pain for so long before doing anything about it. You just have to try and find something that can hopefully work for you.

[Broseley in reply to Groovykindoflove1992]

Yes TeddyZ I agree with the points above. I ended up with an old style office chair that enabled me to sit upright because the modern ones lean back too much. An upright position supported my back better. So find what suits you best.

[Thirkelly]

Might sound a bit strange but i've recently found it helpful to change my attitude to 'rest'. I wouldn't deliberately miss out the pred so try to see rest in the same way as medication. This also helps me as i'm prone to think i shouldn't be sitting down with my feet up doing nothing! I try to think it's not being lazy, it's having 10 minutes of medication.

[winfong]

I work as well, but did cut down to 32 hours (Wednesdays off). I work from home, on the computer all day, but am constantly up to make tea, log on to my home computer, see what it's like outside, check on my wife, run an errand ...

As for other activities, I've had to learn (the hard way) that I'm actually pretty disabled. I don't count on / plan much of anything. If, however, I am feeling oddly well that day (or morning, or afternoon), I do try to take advantage of it. Even then, though, I have to watch it - if I take too much advantage of it, I know I'll pay for that tomorrow.

[Groovykindoflove1992 in reply to winfong]

In a way, I feel almost lucky that my pmr really raised its ugly head a month after we went into the first lock down, otherwise I know I would have had to take a lot of sick leave 💁‍♀️ I went proper shopping yesterday for the first time in months, and I dropped my Boots advantage card at the till, squatted down to pick it up and then got properly stuck and couldn't get up again. Three staff members, including a big burly security guard, had to help me back up again. It was mortifying 😩 I realised I had reached my limit and came home straight after. I am paying for it today. I think I was trying to get away from permanently mollycoddling myself and 'pull myself together' a bit. Well at least I had a go, but now my attitude has firmly changed back to 'rest'! I finish work for Xmas next Weds and will have three weeks of proper rest 😴