Is activity a trade off for pain

[KathinAyrshire]

Does any one else find that the more they do the worse the pain? I've always worked through pain from such minor things as broken toes, dislocated fingers etc. but the flares seem to be getting the better of me. I know without doubt that if I sat on my backside for the next week or so the pain would diminish but the Rayburn still needs refuelling, the fire still needs lighting and so one, just to survive the day in a reasonable amount of comfort I still need to use my hands. Has anyone any advice as to how to reduce the pain without resorting to major drugs.

[Hidden]

Oh dear Kath. This is such a hard one. For years, I routinely took 800mg ibuprofen every day after breakfast and 800mg before bed. I was an expert on the price of Ibuprofen and knew that the cheapest place to by it was in the supermarket and not the chemist (you just had to remember to but it every time you went in because of the quantity limit).

This amount didn't completely stop me getting pain and stiffness - and there were times when I was taking much more, and stronger drugs. But it did take the edge off things. I managed to go to work, walk most weekends and swim once or twice a week. Activities that made pain much worse did tend to be the household chores (and this is still true).

1600mg is not the maximum daily dose of ibuprofen and should be safe enough for long term use (although you should not take it if you have lupus nephritis or an unrelated Kidney problem).

Have you got a physiotherapist or an occupational therapist? These people are (in my view) more help with the practical day to day business of getting stuff done than the consultants. They may be able to advise you about aids to help you, or ways to do things differently to avoid the pain (for example - I always use two hands to hold a plate now, not one - and I never carry a huge pile of plates. Slow - but far less pain inducing.

I have no idea what you do about the Rayburn (I used to get really bad carpal tunnel syndrome when I had to deal with mine daily).

[KathinAyrshire in reply to Hidden]

Dear Maggie,

So many thanks for your reply, I've not got anyone involved with my care apart from (in order of priority) me, the gp and the consultants. I don't have any faith in physiotherapists, occupational therapists are much better here though. I've got some aids for the kitchen, such as to open bottles and so on, but the main problem I have is the lack of physical strength to deal with day to day living. All the gp can suggest about the Rayburn is to get a replacement oil burner, instead of solid fuel. I have £8,000 loafing in a bank account (I wish). What planet do they live on?

I will try to follow your suggestion to use two hands instead of one for everyday tasks to try to avoid the pain but it is a serious comfort to know that I am not alonein tackling everyday problems.

Thank you for taking the time to answerk sorry about the delay in replying, just coming out of flare with hands

Love Kath

[Riverbird]

Yes I too have this problem and mine can be just minor things. For instance I know that if I spend time pruning in the garden, that night the hand I have used will flare up and be so very painful, stiff and swollen I will hardly be able to move it and certainly cannot hold anything. That unfortunately seems to count for any sort of repetitive activity or anything involving extra exertion on joints and muscles. The problem is I can do these things at the time, but then dread the evenings if I have done too much, especially feet and legs when mobility is very affected. However, swimming seems to help me in that there do not seem to be after effects and it keeps me exercising, I can only suppose this is because the water helps support and very little undue strain on joints is involved. I find that days when one does less in the way of household chores are definitely better, but you cannot always not do things or pace yourself, so it is hard and not sure there is an answer. This is certainly a very unpredictable illness and it sometimes seems difficult to fathom out what does and does not affect it. The occupational therapist route that maggie recommends seems a jolly good idea, and I might give that a go myself, so thanks very much for that suggestion. The painkiller issue is difficult because what suits one may not suit someone else, so guess it could be trial and error and one has to be careful of any interaction with anything else you are taking. Sorry not to be of any help but sometimes fellow feeling makes one feel less alone with it.

Hope you find something to help you thought the day in reasonable comfort. Take care.

[Hidden in reply to Riverbird]

Yep - pruning will do it for me too.

[KathinAyrshire]

Dear Riverbird

So very many thanks for your reply, I was feeling so guilty that the dog fur was running as tumbleweed across the dining room floor and I didn't have the energy to hoover the infernal stuff up. Domestics, or at least the small repetitive movements involved in dusting, hoovering, cleaning and so on certainly increase the pain most, but at the moment I have no grip on the right hand and no strength on the left hand. Don't have an occupational therapist or anything other than the gp at the moment, but it really assures me from your reply that it's not that I am being lazy or over imaginative, you are so right, the difference it makes not to feel you are the only one.

With many thanks for your help

Love Kath