I was only diagnosed with RA in February, but it was a very aggressive sudden onset. The week before I was kickboxing for 3 hours a night 4 days a week and cycling, swimming and jogging.
On diagnosis I found myself housebound and obviously in lots of pain. However, 6 months on, having been taking 25mg of MTX a week and codeine and paracetamol I am finding that I want to start exercising once more.
My physio says Im still flared (which my hospital visit this week confirmed), but she also said I was unrealistic to expect to ever ride a push bike again or go for long walks in Derbyshire etc again. My Rheumy Nurse says the opposite and wants me to get back to my exercise.
So my question is - if Im on codeine and paracetamol and its only aching on this regime how do I know how much exercise is good or what could cause more damage and thus problems in the future (specially with Physio saying do nothing but stretching and posture exercises for now and Rheumy Nurse saying do what you can as it will help me sleep and its what my body was used to).......
So confusing - want my life of exercise back, but dont want to do any permanent damage... Surely with my diagnosis so quick and starting MTX so quickly (within 2 months of onset) I shouldnt have damage resulting in the need for pain relief, but I do.... medical advice is so confusing and contradictory.
Tina
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Hi - I can only speak from my own experience and say that if I don't get daily muscular and aerobic exercise then I start to flare up. From my perspective it is exercise that keeps my body strong enough to keep the RA at bay but I know it's easy to say. I found that when I was flaring repeatedly earlier this year and last year that I just kept going but didn't overdo it with the affected joints that it made things no worse and maybe improved things for me. But this is just me and I don't think my RA has been nearly as aggressive as yours - and also bear in mind that I was extremely unfit and overweight when diagnosed so my idea of a good work out may well be very different to yours. I spend 30 minutes on the Nintendo Wii fit - mainly using muscle and yoga exercises but also doing some upper body ones and often 10-30 minutes on step aerobics or jogging on the spot in addition to the more general ones. I also walk the dog for about 45 mins to an hour a day and I do Tai Chi and a gentle aerobics class once a week.
If I get sick or am on holiday I may still be walking a lot but that's usually when joints flare up - so I'm now rather paranoid about not doing lunges and tummy pull ups and all the other things I do in my workouts daily. Sorry this probably doesn't help much but my physio says that it's best to push a little every day so things don't sieze up and muscles don't waste. Tilda x
All feedback on what works for others is good with me so new to the disease.
Tina
Hi,
Thats shocking you were told not to expect to ride a push bike!
Like you my RA hit me quickly and aggressively and within 10 months was under control; I wonder if you still need pain relief as your still flaring? maybe once thats under control you could do without them?
I started cycling 6 months into diagnosis, still flaring but it really helped, I found it easier than walking back then and the exercise felt fantastic, it helped re-strengthen my knees and just made me happier. Once my meds worked I started going to the gym, again that has made a huge difference to fatigue as I hadn't really noticed until then how much muscle wastage I had.
I rarely take pain relief now for RA but just for the odd infection I get as a result of a lowered immune system.
I'm not sure about the kick boxing just yet but surely the cycling and swimming should be encouraged. I'm sure NRAS have a leaflet on this subject??
I'd be more inclined to accept physio advice than rheumatology nurse advice, as long as the physio did fully understand RA, but I agree the advice is confusing. Stretches and posture exercises are incredibly important, and you don't want to push yourself too hard if you are still inflamed (as that would just aggravate things more), so I wouldn't go as far as the rheum. nurse has suggested just yet.
Perhaps you could compromise a bit by keeping up the physio exercises, and by adding in some very gentle swimming (not fast laps) in a warm pool, and some very short, but regular, walks on easy terrain for now, and see how you go in the next week or two. If anything at all starts to flare or you get any more signs of inflammation on this level of exercise then you really will need to drop back to what the physio says for now (but not forever).
personally I'd challenge the physio's view of the world and ask him/her to explain why he thinks that's right, and what he actually knows about RA as some physiotherapists are not that well informed (in a polite way of course...)In my experience it's daft, as exercise has really helped me get back on my feet. I think over time you can start to sense when you've pushed too far, but low impact stuff done carefully to start with should be helpful not the reverse as the pain relief won't completely mask when you're overdoing it. I've done the same as the others above, and gone from the early stage of struggling to hobble past the front door to actually doing more physical activity that I've done in many pre-RA years. Build back up slowly, and take more frequent rests than you would have done previously, but don't give up on the hope of getting back on a bike. And walking is one of the best things you can do in my personal opinion. If I don't walk for at least an hour a day I really seize up! And that includes contours. You need muscle tone to help protect your joints, and that's much harder to achieve if you're sat on your bum.
Oh. and you may not have permanent damage yet even tho' it's been 6 months. Pain could still be coming from inflammation, as can take a long time to get it controlled. Polly
I'm very keen on exercise and sure that my mobility and bone strength has been preserved by my insistence on doing as much exercise as I can.
But it's also important to build up slowly from where you are now. Not where you were before the RA started.
Discuss with the physio what other exercise you can add in to the exercises he/she has given to you and gradually increase the amount and frequency. If the physio says "Don't do this or that" always ask why not. A RA trained physio should have a good grasp of what is best for joints and muscles but a general physio may not.
I know when I went for physio after breaking my leg (fell down a mountain in my fifties) that I was put with the old ladies (because of my age) but I joined the young men's group (mostly motor bike accidents) and got on much better!
Since the onset of RA I have started cycling I find it really helps with the symptoms of RA, and keeps the pain at bay. It also gets me out of the house cycling along the canals to see the beautiful waterways and parkland that this country has. I would rather be doing this than sitting in the house feeling sorry for myself. For me cycling helps me both physically and and mentally, this is something your physio should think about
It's interesting how much people do - I think you have to work out for yourself how much to do.
I thought that I did quite a lot but was amazed at how much Tilda does! I walk my dogs for about 45mins to an hour each day but couldn't do much more than that & the only way I keep going is to take co/codamol 3-4 times a day!
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