Pain,but no fatigue, from doing too much?
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Scunnner, scunner! I wrote some details and it's vanished. Basically, I have been on 11 mgs for nearly 5 weeks....was doing fine. I had family staying last week. I thought I had paced myself but was in pain when finishing off and serving up the family meal last Sunday. Same on Monday. It eased on Tuesday and also overnight. I have been busy getting the house back to normal. What's that?? 😳😳 Family all due back for an overnight again this week! I had the same pain preparing tonight's meal. I don't think I need to up the steroids. I think I have just overdone it. How long do you think I should stay on 11mgs? Any advice would be welcome. Thank you.
0 likes, 10 replies
Guest Silver49
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EileenH Silver49
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In the early stages I found that even having people in the house was tiring - never mind the extra work associated with it. YOU served the family meal - I would either have got them to help cook, got take out or gone out to eat. You then have done extra getting the house back to normal - already. I had guests for 2 nights last week. Some of the linen laundry is still waiting! We ate out one night (they wanted proper Italian pizza so who was I to argue!) and grilled the other - not a lot to setting up our BBQ on the balcony and sticking a few veal chops on it and making a simple salad - which in fact they did for me. The dishwasher washed up most of it.
If you had kept a diary of what you did you'd be very surprised at the difference from normal. Google the Spoon Theory by Christina Miseriando - that is our normal from now on. You probably peeled, chopped, lifted - and worried. All of it makes muscles and joints sore - and they take 3 or 4 times as long as normal to recover.
And if you don't delegate when they come back it'll be the same again. You need to stay on 11mgs until all evidence of your flare - because flare it is - has disappeared. A flare is a return of symptoms because the dose you are on is either not enough for the activity of the disease - OR the physical activity you expect it to cover. If you do less you need less pred, people who go out to work inevitably need a higher dose than those who don't and housework is similar activity.
Silver49 EileenH
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EileenH Silver49
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I dealt with it by having the bedding all sitting on the bed - they were perfectly able to make the bed up and that saves a massive amount of effort. Even now, and using single duvets, I need a sit down by the time I have stripped the bed! And another after putting on the clean ones! I ask them to strip the bed too - and it takes me a week or two to get it all washed. They are as capable as me of peeling veg or I plan particularly easy food. There are good frozen veggies including roast spuds. Or I make something well in advance - that is what a freezer is for. Occupational therapy tell you to consider using ready-prepared veg if your hands hurt (as mine did) - not cheap enough in my book to use every day but for the occasional large meal its fine and cheaper than eating out. There are all sorts of things that make it easier - you just have to be accepting of "domestic help" - it isn't always a cleaning lady!
If you don't look after you - who will look after your husband if you are unwell? Carers need a lot of care too - otherwise they can't care.
EileenH
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Susanne_M_UK Silver49
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I think a lot of us with PMR or GCA were used to taking charge and being there for others before the illness. I certainly was and even now find it hard to accept that I'm not the same person I used to be. And the trouble of course is that "we look so well"!
I have GCA and have just been through a big family get together (daughter's wedding) with all that entails, and my mum staying with me for a week. I even found having to constantly talk to her very tiring. I'm now totally exhausted.
I can't really offer any advice except to say - try to be kind to yourself and rest as much as you can. I'm having to rest now far more than before the wedding. I managed to sweep up a few leaves in the garden and repot a plant today, - I then slept for 1.5 Hours!
Silver49 EileenH
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Silver49 Susanne_M_UK
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Silver49 EileenH
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ray12929 Silver49
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