I feel i have been doing so well lately, my sulphasalazine is working nicely now, along with the hydroxychloroquine, so why does it still hurt when I over do things like the gardening or when I have a hard day at work (I work in a care home, so can be quite physical)! I thought that when your meds are working you shouldn't get pain and can do the normal things that you used to do! Or does it mean that I may already have some damage, or is this just normal, does anyone else have this problem?
Ganit
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Ganit
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Hello Ganit . I'm so glad your medication is a good match for you. I think it's pretty normal. When we overdo things our body steps in to remind us that we have this condition and we must be mindful of the fact. Although our RA may be well managed that's what it is, well managed not cured. I hope I'm making sense.
You make perfect sense Cas, I suppose when things seem good I think ooh I can do the normal things I used to do, because deep down I suppose I'm hoping it's not going to come back, but of course it never went away in the first place it's just being controlled as you say and simmering there waiting to pounce and rear its ugly head! I just need to remember that and not get too disappointed each time it hurts.
This last couple of days it's been nice weather so I've been doing a bit in the garden, started with deadheading which was ok then I trimmed the rosemary yesterday, hard back as it has got out of hand. I replace my BuTrans patch on Saturday morning & boy was I ready for it! I couldn't get out of bed this morning, I had to do it in stages & even then it took forever to get to the shower room. So even when reasonably well controlled overdo things & you know about it, we never learn though.
True, we don't seem to learn do we, but then I suppose we are eager to do what we can when we are feeling good! I hope you feel better soon, though I find it takes me a good few days to feel any better! By the way what is a BuTrans patch, is it a pain patch?
Exactly! You feel pleased that you've achieved something then pay for it for the following day though wasn't too bad this morning thanks to the BuTrans.
Hello Ganit, I have been living with RA for seven years now and am in remission, but if I ask too much of my body I get punished. I know my limits by now, but sometimes I just can't stop, fully knowing I will have to pay. It's a balancing act. I can live with it. Hopefully you'll find your limits and work will allow you to take them into account. All the very best and keep us up to date please.
Thank you stbernhard, yes the key is knowing our limits, but when the pain has eased that seems to be forgotten! I know I have more weeding to do, I'll just have to leave the heavier weeding to when I am feeling much better, or just get my husband to do it! I am feeling a bit better today so maybe some light weeding will do, I will try and listen to my body more and stop as soon as my body hurts!
Sorry to butt in -I see that you are on sulphasalazine. I am on that too for about 7 weeks. But symptoms being masked by highish prednisone. Do you have any idea how long i could expect it to take for the sulfasalazine to work? How long did it take for you?
It's hard to say really as I didn't notice my steroid shot really wearing off this time, either that or my Sulfasalazine kicked in quite early, I think they overlapped! I started Sulfasalazine back in the end of February and they do say it can take up to 3 months for it to start working, so hang in there you should start feeling better soon. Just don't overdo things!! I must admit I do feel even better as time goes by.
Thanks so much for the reply. All very daunting. It is partly anxiety about the length of time I have been on the pred. Anxious to get off it before too much damage is done but realistically know that o would be totally unable to function without it until something else starts working!
Hi Ganit, it's good to hear that your meds are working. But I think with any body when we over work our bodies are going to let us know, specially when we have medical issues. We just have to learn what our limits are before causing our body more pain.
What a good question!! And very good answers too! I presumed that if my meds were working that I shouldn't feel pain but, obviously RA maybe we'll controlled but, our activity levels (feeling good today, I'll conquer the world scenario!) can make a difference to pain levels. I've had RA for several years & have usually experienced on waking "which joints hurt today?" The last 6 months the same joints have been a problem, what do others experience? Xx
Thanks for your reply Jane, i know what you mean about different joints and certain joints hurting, my hands, wrists and knees usually hurt the most when flaring or over doing things, my neck started off as wear & tear many years ago but seems to have joined the RA equation as it started to increasingly get worse last year when i had a flare and hydroxychloroquine no longer helped but significantly improved when i had my last steroid shot before starting sulfasalazine and has now improved even more now the sulfasalazine is working. Also sometimes my elbows join in and my feet & ankles and even my hips, though one of them is OA. Oh and sometimes one or both of my shoulders like to join in as well so they don't feel left out! This is certainly a very strange and unpredictable disease, it certainly keeps you guessing!
Even on a good day most people with RA have some restrictions, and usually the longer you have had it the more restrictions you have. RA is a progressive disease, so it will worsen with time, but because you are taking drugs which seem to be working well for you the progression should be slower. Looking after your joints, especially when they are inflamed will also reduce the damage.
For some people with RA, gardening without pain is normal, for others getting up the stairs is an achievement. And for yet others the condition changes significantly from day to day, week to week etc.
I walk with a rollator now. Ten years ago I wouldn't have needed a stick, but I haven't been able to get up and down from the floor without severe pain since childhood. So you see my mobility and flexibility has reduced, and that's to be expected.
It's not nice to think your body is deteriorating far more quickly than the bodies of people without RA but it's not the end of the world. Enjoy your hobbies, but do less gardening or take longer breaks. Maybe try some tools which might help or use raised flower beds or boxes so you don't have to get down so low. Maybe you could focus on hanging baskets.
I think it's unlikely you will be able to continue to work in a care home for long with RA. It's too much strain to put through your body and it is increasing the risk of deterioration in your joints. It might be worth considering a change of career and looking at training and/or college courses.
I think you may be right about working in a care home pinksugarmouse, it can be hard on the joints, I even try to walk to work and back when i'm on an early shift, which is about 3 miles each way, it kills me when i get home and for the rest of the day!!!! I know it's good to keep moving and keep your muscles strong and i've only got it mild, some people with RA run marathons I admire them, because I couldn't do it!!! I dread to think what it is like for you lot that have it severe!!!!!!!!!
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