I was diagnosed with rheumatoid arthritis over four years ago and was wondering what people's experiences are with continuing exercise. I ought to point out that I'm in my fifties and had been a racing cyclist for most of my life until my joints went kaput. In the first two years of having arthritis I went from being able to ride 100+ miles per day in the Alps etc. to having to stop after one mile from home due to feeling so rough. That was painful in more senses than one.
After two years of the usual treatments I was switched to methotrexate and then anti-TNF, and while the first of those didn't have much apparent effect, the second transformed how I felt. Within a few weeks of the first injection the swellings had gone down, the fevers gone, pain largely gone - bliss! The anaemia still seems to come and go for some reason but I've gradually built up my cycling again so I'm able to get back to some long rides of 100 miles again, albeit somewhat slower than before due to the anaemia! However, when the rheumatologist told me that exercise was to be encouraged I took that as a green light to ride as much as I am able.
The biggest fly in the ointment is the susceptibility to infections due to the anti-TNF/methotrexate, and avoiding colds, sore throats, coughs etc. can be problematic. I've had two chest infections this year already. I do still have problems with hands, elbows, shoulders - but not legs at the moment, luckily - partly due to the recent infections causing me to be on and off the MTX and anti-TNF; generally the aches and pains are considerably better they were before the anti-TNF but not non-existent.
Anyway, the reason I'm posting is to find out (a) how other sports people have coped in the long term, (b) at what point do you stop riding or running or swimming etc. due to infection, and (c) do you ever get back near your best? (I think I might know the answer to the last one.)
Thanks
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hawker955
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I can't help at all with this question being the least sporty of people - but since I've had RA I have pushed myself on lots of fronts including exercise. I walk about 5 or 6 miles a day plus I try to do at least 30 mins on the Nintendo Wii Fit - which isn't much for someone like you probably but I find that if I don't keep moving and exercising I stiffen up and that's when the trouble starts. I'm an artist and was told that my hands would need much more rest than they get because my fingers, knuckles and wrists were the worst affected but even with them I've found that exercising them with physio exercises and a stress ball keeps them pretty much okay as long as I do it regularly. I think some people get RA too aggressively at the start to do much exercise and then it just escalates so they can't do any and becomes a vicious circle - so I've been lucky and am also very stubborn and am not giving up the things that keep me sane RA or no! It sounds like you are similar about your grand passion and I hope you can keep going and not let the anemia get the better of you. Tilda x
Hi, how good are you being a racing cyclist. I love d biking but not to that standard! I am probably the type Tilda describes, my RA came on fast and aggressive and unusually i was told not to exercise!! So now i'm rather unfit due to mobility problems, however I started Humira on Monday so heres hoping.
I know if you use the search bar on NRAS homepage they have lots of articles and leaflets on exercise so they may be helpful.
Dont know if we will ever get back to near your best.....maybe its just your age not the RA .!!...... sorry cheeky joke!!!, you can tell me off, (wish i could walk never mind bike lol) lots of love Axx
Thanks for those replies. If it wasn't for the Anti-TNF I would not be riding, simple as that. The MTX helped a bit, probably a lot more than the sulphasalazine ever has but because the improvement after three to four months with MTX was not really very much the anti-TNF was started and I never really looked back. It is only looking back to the first two years, pre-anti-TNF that I realised just how sick I felt.
The first two years involved the feeling of having sprained wrists, swollen hands, anaemia and fatigue yet sleepless nights, fever, and about forty or so individual joints being afftected. I simply would not, could not, have been able to cycle the way I do now without the anti-TNF. I don't think I can be as bad as many sufferers report but is that because of the anti-TNF? I don't know but I'm not 100% and would hate to think the anti-TNF might stop working and I would return to my previous state.
The speed of onset is something I've never really thought about before - what is it like for most? Mine came on over a few weeks in my hands, then in a couple or three months was more widespread. One noticeable aspect was that joints that had had a previous injury were affected a lot more severely than other uninjured areas. Is that common?
Hi, you sound like such a determined person to continue to do all the training with the tiredness, I admire you so much cos I just have to walk to the car and I'm shattered! I think that the thing about RA, some people can carry on and others just cannot do the simplest thing.It is so variable from person to person and from day to day. I think the same goes for the speed of the onset, mine floored me, my Uncle had slow pains for a long period. I had a broken foot before the RA and it was really sore during my flares but the Doc said in my case it was osteoartritis around that area.
I totally agree with you about anti tnf. I met a man in the hospital on monday who was in a chair with obvious finger deformities. He was lovely and told me he had RA but in his day( he was 7o), there was no treatment and when you had a flare you went into hospital and bed rested for a month! He says he wished he had got it now cos he know that not moving around makes things a lot worse and that there had been the drugs around then for him.
So i'm so grateful for the Pharma and research that is done for us. You keep going I think and you could maybe raise funds for NRAS, I'd sponsor you!
Do you know any specialist trainers who help with training for (I'm thinking) high altitude where they have to cope with low oxygen levels, like mountaineers? They might have some training tips for coping whilst anaemic. Love Axx
Actually I took up cycling and swimming after I was diagnosed with RA. Probably only 40 - 50 miles most weekends ( cycling that is ). I find that the exercise is great and it helps psychologically, stops you feeling sorry for yourself
Think I might get my bike back out. Its definatley worth a try and as its my feet that are the most painful, walking is my trouble, maybe the bike can take some of the strain. What u think starting again from being in a chair to now in crutches, u think the bike will be useful? Would love YOUR advice
Cycling is good in that it is a non-impact activity. Normally when cycling it is best to wear shoes with rigid soles but I'm not sure in the RA situation, i suppose it depends how painful different shoes are when you pt them on. Just try different sorts, but cycling itself is easier with rigid soles.
If you are on crutches, then actually getting on the bike is something that might be awkward. If you haven't got a bike, or even if you have, a trip to a decent bike shop should help. They are used to getting people on to the right size bike and if you explain your issues, they should be able to guide you. If they aren't helpful or don't care, then simple: find another shop. Don't be worried about going in to what might look like a shop full of fancy racing and mountain bikes, most will be helpful and friendly and they ARE the people used to fitting bikes to riders.
Hi,Allanah,I would struggle on a normal bike, especially going uphill, but I find a recumbent exercise bike quite good. I try and do a few miles a day. Don't think i would ever manage to do 100 miles like you Hawker-thats brill.
My RA was diagnosed 2 years ago when I woke up one morning unable to move. I think though it had been in the background for years as I was often at the GP for different joint pains(and no injuries) which always seemed to clear after a few days. In the end I didn't bother seeing him as it became the norm. i remeber about 20 years ago having a red eye and the opthamologist asking if there was any RA in the family. I didn't realise the connection then, but episcleritis/scleritis preceded the diagnosis of RA by a year. I had decided to get fit and lose weight before I hit 50 but the RA seemed to come on after a bout of exercise.
Thank for that, should get the mri second scan soon then it hopefully will be all clear on the exercise. I will let you know how i get on, and ye hadn't thought about what to do with crutches,,, will work it out!!
Sorry, just using this thread to mention that I am currently finding that my hands and wrists are very painful after an hour of riding or more, so much so that it is difficult, or at least unpleasant to grip the handlebars for more than an hour or so. I manage to ride for an hour, but do have to continually alter the position of my hands to relieve the discomfort., between the drops/ the brake-hoods and the tops of the 'bars. I have competed eg for 12 miles last night but greater distances are limited by my hands and wrists not by my fitness. I hate bumpy surfaces, like so many roads have nowadays. A mountain-bike is more comfortable due to [a] the flat handlebars and the much fatter tyres absorbing bumps. Luckily paracetamol and Naproxen are not banned substances for competition!
I just take a common sense-approach, wearing the padded racing mitts all the time plus avoid bumpy sections where possible. I could not tolerate it for a hundred miles though now, so it is worse than five years ago when I rode eight or ten such rides that spring. I am hoping to compete in the National Para-cycling championship in July if I can get the necessary training in before then, depending on my hands of course!
Cycling is what I do, and what I am, so cannot abandon the sport!
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