Pain,but no fatigue, from doing too much?

Posted , 8 users are following.

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

10 Replies

  • Posted

    You just about answered your own concern. I have not had company including family since last Feb.! The fatigue factor has hit you long and hard. So many on this forum talk about how we all need lots of rest. If you were doing well on 11mgs for five weeks, what changed in your life to cause pain? Maybe you need lots more rest,no company and see if the pain improves. Best of luck and let us know what happens, Ann11195
  • Posted

    I think Ann has it spot on - and you have answered it for yourself! 

    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.

    • Posted

      Thank you to both you and Ann. Yes, I realise how much I have done and I guess I look so well that everyone thinks I can do what I normally did. Unfortunately, my husband had health problems prior to retirement and although some of it was resolved by recent major heart surgery he has another serious health problem which is only going to deteriorate. In fact it's me who buoys everyone along and possibly why he has been doing much better than was anticipated. We did a bit of travelling on retiring as I could see that to seize the moment would be wise and I'm glad we did. I hope we can do so again but not at present. We have other more manageable activities for now. He is willing but not able and when I see him so unwell from trying to help I feel worse. I have always been the one who could juggle everything and it's hard to accept that I can't but I know I can't. I guess it's time to look after myself too! Yes. I'll stick with the 11mgs until the pain goes.
    • Posted

      Yup - I do appreciate the problems you face especially if your husband has a progressive illness and I can very well identify with how you feel when he's insisted on doing something that makes him worse. I will never forget watching my husband struggling to do something inthe garage that was way beyond him when he was on chemo. It was heartbreaking. But when the family come you either have to say to them, "you are welcome to come but..". or you have to accept a week like this. They are family - they can also step up to the plate.

      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.

    • Posted

      PS - occurred to me as soon as I clicked! Try using arnica cream or gel on the sore bits. It often helps a lot - no idea how or why. One lady said this week she'd tried it again and it worked this time - she thinks maybe she didn't persist long enough the first time.
    • Posted

      Silver, I really feel for you, trying to help and shield your husband from extra work and stress. It must be so hard.

      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!

    • Posted

      Thank you, Eileen. I'll try the arnica cream. I do plan ahead with the meals and use the freezer. I also try to keep it simple when I can. I have considered having someone in to clean. It's not the cost but the thought of someone cleaning if either of us is not so good. I prefer to do it in bite sizes but got it wrong this time. I had a lady to clean when I worked but she had a key and I came home on the Friday to a clean house. I think the idea of the bedding is good. I didn't strip the children's beds this time as they were only here for 5 nights and back for a night this week. They're not exactly dirty with all the showers they had. I realise that I need to be 'sensible'.
    • Posted

      Thank you, Susanne. I know how much work is involved in a wedding plus the extra with your mother staying and the talking is draining without the PMR. I'm not surprised to hear you are exhausted. I used to love sweeping up the leaves....one of my favourite jobs. We have someone who does some gardening so we may have to leave that job for him. We are about to have quite a lot of work done in the garden to make it lower maintenance. I hope you take plenty rest following your mentally and physically draining time. It is lovely to catch up with family at a wedding but so exhausting.
    • Posted

      I realise how difficult it is to watch a loved one going through chemo and what it does to them. Sometimes they want to do more than they are able for and part of that is their pride and trying to prove something to themselves. It's hard to stand by and watch. I worked in oncology for many years.
  • Posted

    your body will let you know but i found stress doesne help...slow down

     

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.