Running with RA

[RayofFuckingSunshine]

I became really ill a few years ago with Rheumatoid Arthritis and my fitness rapidly deteriorated (and I got fat). Although my health improved with medication I was still not well enough to do a lot of exercise and on days when I could of, I was too busy wallowing in self pity to get off my backside.

I'm pretty much in remission now (had one small flare since having my daughter nearly a year ago but managed to come out of it without medication - it was expected as it's apparently common to have a flare due to the hormones). I still have some minor inflammation around my left knee but suspect that if I shifted the weight that would ease up a lot, there is no pain there usually though - it really is just inflammation.

I started yoga once a week a couple of months ago and that's doing quite a bit for my joints, but I'd like to take up some cardio and running is the best option for me, I could take the dog and it's something that is free.

My local running club do a walk/starters group twice a week and knowing myself, I am more likely to stick with it if it's an organised group. I'm hoping to start going next week. The idea is that I build up gradually and eventually start couch to 5k on the days that I'm not with the club, eventually even joining the real runners possibly!

Am I crazy? Anyone else have experience of running with RA? Rheumatologist is generally supportive of the idea as long as I stop at the slightest hint of pain with my weight bearing joints and I build up gradually, so I'm mainly hoping someone will come along who has done similar and can tell me it all worked out well and was a great decision.

I don't, but I have EDS and also got really poorly and fat a few years ago, with lots of joint problems.
I started training with a PT at the gym in September to try and shift the weight, and it is doing good. So far, no injuries.
I think the advantages outweigh the risks. You just need to be really careful to work within your limits and wear supports if you need to. I wear wrist supports in spin class.
Don't try and keep up with the others if it's too much. Take it at your own pace, and your fitness and strength will build up.
Just be prepared for it to take a while longer than it might if you hadn't been ill.

This is encouraging, Ray.

I think I'd probably be swimming instead! But good luck whatever works for you. x

TheCakes that's comforting to hear, that you're managing so well with no injuries. It's hard to strike a balance isn't it? But I agree wholeheartedly that the benefits massively outweigh the risks. Especially if you're careful to minimise problems. I have a friend who is a PT, I may ask him about weights once I've actually dealt with improving my fitness a little.

lljkk Thanks for the link, I hadn't seen that before so has made me relax slightly. Swimming probably would be a much smarter plan but I never learnt to swim properly as a child and I really need to get some one to one tuition to work on my breathing to actually get anywhere.

I love doing weights. I wouldn't have dared trying without my PT because I was too scared of injury, but I feel ace after a good session. Like I've really achieved something!
I don't know a lot about RA (even though I was tested for it on my EDS diagnosis) but strengthening my muscles is really good for joint stability.
I'm a stone and a half down now - about half the weight I gained.
Other lower impact options are cycling and cross trainer, but I'm all for the group training!

Hi Ray I read your post with interest as I also have RA and desperately need to do some exercise. I joined a gym several months ago but don't go because I am scared of what I can do and also have no confidence to exercise in front of other people as although I look ok I know how vulnerable my body has become. I do do Pilates but I don't feel that's enough to get me fit in terms of cardio.

My consultant has encouraged me to 'keep up my fitness', I daren't tell him I hardly do anything! He said I should not be afraid of my body and can do whatever I like, I shouldn't let it stop me. But I do as I am scared of making it worse.

I would love to be able to run or even jog outdoors as it is being outside in the fresh air that makes me feel less stressed and anxious about things and it's a break from the madhouse I live in with 2 lively dc's!

Are you now off all medication Ray? I would love to get to that point but having tried to reduce it last year realised that it hadn't gone away. I am forever trying to reduce it and like to think if I could get myself stronger and fitter this might help me be able to reduce it at least.

Sorry for the hijack but your post sounds just how I'm feeling and I'm trying to decide what the best thing to do about it is.

Honey, could you afford to book some PT sessions? I felt exactly the same - fragile and vulnerable. I would never have believed I'd be doing weights or another spin class again, ever. I've needed such a lot of support, but it's probably one of the best investments I've made for a long time.

Honey1975 I'm sorry I didn't reply sooner, just saw your message. I am completely off all medication now, have been for well over a year (nearly two actually), but it was tough getting to that point and it certainly may not last forever. I did find making myself be more active helped - my RA is definitely worse if I don't get out and do something, even if that something is a 10 minute dog walk. I also found that at the beginning, when I started thinking about how to get off the medication (I needed to be off medication in order to try for a baby, DMARDs and heavy duty painkillers are not great for babying) I would over do it and end up in a worse state than I started in. Learning to actually work within limits was a hard lesson.

I came off medication early 2015. Despite being in remission I do still have some pain and swelling although it comes and goes, and I think it'll continue to get better if I loose some weight and increase my base level fitness. I also had another quite severe flare when my youngest was around three months but I got through it without drugs as she is breastfeeding (and I couldn't get a rheumatology appointment at the time), but I was lucky and it levelled out within 3 months. During my pregnancy I started focusing on just moving more. I swam with my eldest and would walk a lot. It's really only the past couple of months that I've decided I'm really going to get in shape. Like your rhumy, mine was quite happy and said I could do anything I wanted as long as I took it slow. So I started weekly yoga and I make sure that if I'm having a bad day, I do adaptations and never push it too far. It's worth taking it steady so I can go back next week rather than push myself and have to take weeks off because I've caused an issue.

I wanted to start running because, like you, I wanted to be outside. It's cheap, and with two kids and a dog my house is a madhouse. I decided to message a local running club who do specific beginner run/walk sessions and I went to my first one last night. I will confess that when I woke yesterday my left knee was swollen and a little painful and I debated not going. Then decided to give it a go anyway, the leaders knew about my RA and if I had to stop then I had to stop. I took a couple of ibrupofen an hour before I went out, my knee held up really well and I woke up this morning with the swelling completely gone. I'm planning on doing a run/walk three days a week and just going slow and steady, once with the club and twice alone. I know lots of people rave about couch25k but I think that would be too quick for me, I'm hoping I can start week one in a week or two and maybe do each week twice, my goal is to be able to do my local 5k park run by summer which I don't think is beyond the realms of possibility. Is there a running club near you that would offer something similar to mine? I was petrified before I went yesterday (social anxiety is a nightmare at the best of times but I'm also really self conscious), but everyone was lovely and supportive.

TheCakes how often do you see your PT and how long before you
noticed a difference?
I did see one for a few sessions at the gym but I didn't enjoy it. I felt like they didn't understand my condition and were just giving me a general routine of exercises. Especially when he got me on the machine with weights (sorry don't know what it's called) straight away. That was way too hard for me and I felt panicked by it and it put me off.

Ray that is amazing that you are off medication, well done. I didn't realise that could even be a possibility. When I started to feel better after a couple of years the rheumy nurse 'kindly' pointed out to me that I must remember that it was the drugs making me symptom free and it didn't mean it had gone away!

My rhumy saif that it does go away for 1 in 3 people, I keep hoping that'll be me one day but when I have tried to reduce the meds I feel it creeping back. Having said that I feel pretty good at the moment & I've only been taking the meds every fortnight instead of every week.
How did you get off the medication, did you have to do it gradually? Do you actually still have the condition or has it just disappeared or is it still there but underlying?
I also had to stop mine when ttc dd but the pain was so bad I had to take steroids while pregnant & then straight back on meds after she was born. I've just put up with it as it's the only way I've been able to cope with work & 2 young children but as they are getting older & easier I would love to start trying to help myself get off them starting with getting fit and looking at my diet.

I love the idea of the running club so will have a look locally. I have some mum friends whi have offered to go out with me for a run but I'm just worried I won't be able to run for long at all and will be embarrassed.

Sorry for all the questions but your
post has given me some hope and inspiration, thanks. If you'd prefer maybe send me a PM.

Hi there, I have RA and have been recently thinking of taking up excercise again as things are more stable at the moment.
I walk a lot for school runs and getting to work, the more I walk the better I feel in myself and I'm sure my fitness has improved too. I'm a bit scared to try running again too, really don't want to do any more damage to myself.
I used to really enjoy swimming, so will look into a regular session on the pool and see how many lengths I can clock up for a challenge.

Don't apologise for the questions, I'm happy to answer anything (well...almost!)

I still have RA and will for the rest of my life. I could have a flare at any time and have to go back on the meds, it's just in remission at the moment. The flip side of that is that it may never come back (fingers crossed).

Coming off the meds was gradual, once all of my physical symptoms had eased and my test results eased (RA factor reduced and CRP markers down to normal etc), we gradually started reducing them until I wasn't on them anymore. I have had a flare since being medication free but it eased to just a small niggle within around three months - it was expected after delivering my youngest.

I still have regular appointments with rheumatology (have my next at the end of February) where we will look at the joints and check for damage now that the latest flare has subsided, and will run blood tests to actually see where we are, but generally that's all my appointments consist of now - I repeatedly get told not to overdo it and to contact the nurses if I do develop any new symptoms, other than that it's a check in. It would be nice if I got told that I didn't even have to do that anymore - that it's gone for good, but I won't hold my breath for that one.

I'd love to be able to say that I did it through eating well and taking care of myself, but I really didn't. It wasn't even perseverance. It was luck, pure and simple. But now that I have been lucky I intend to make it as difficult as possible to be wiped out by it again. My first flare was awful, I was 23 - ended up having to leave university and can't afford to go back. I couldn't get out bed without help, bathing was an impossibility (had a walk in shower otherwise I wouldn't have been able to manage). Looking after my eldest was impossible and my husband pretty much wiped himself out by dealing with everything. I will do pretty much anything to try and make sure that doesn't happen again, more because I'm petrified of it than anything else. I may only be a username on the internet, but I offer you my full support via PM/thread/Facebook whatever because living with a chronic disease is awful, no matter what it is

MrsStarWars swimming is something I've been advised so much, it's supposed to be great for those of us with joint issues as it's so low impact.

Ray thank you so much for your reply & sorry I haven't come back sooner to acknowledge. Your response was so honest & having been through the pain myself I totally know where you're coming from. It was an emotional read for me as I'll never forget the first few months of my son's life when I was in agony, unable to pick him up easily or enjoy new motherhood. I am so glad for you that is gone away & long may it stay that way😊. I am in bed with the cold from hell & will write more when I can see properly once eyes have stopped streaming😷!

Hope your cold is much better and doesn't cause too many problems. I didn't manage to get out for a run as planned last night, so just attempted one this morning - I cannot run on mornings! Despite remission my knee is still a bit of a problem. The inflammation is much worse on a morning, and although it wasn't painful, I couldn't bend it properly so had to give up half a mile in to my walk/run and come home with plans to try again in the evening after a couple of anti inflammatories. Bugger.

I honestly would advise running especially if flared in any way. I got a good PT at my gym who did a lot of research before she made me up a plan. Cycling, interval power walking on treadmill, cross trainer for cardio.

I have RA (acute onset after the birth of my daughter). I've had both knees replaced. The amount of stress you out your knees through running is unbelievable, I just wouldn't.

I appreciate what you're saying, but I made the decision to begin running after a lot of discussion with my consultant who has advised that as long as it is taken slow, and built up gradually, based on the way my disease effects me and has progressed resulting in clear blood work, running may even be beneficial.

I do have to ask how you find cycling though? Before I became ill I used to cycle frequently, I tried again when my first flare subsided to a minimal level but it increased the issues with me knee again very drastically so I was advised to quit.

I'm okay with cycling, even before replacements but I don't particularly like cycling! I wouldn't even attempt running with even the mildest flare as it can aggravate it. Sometimes I get a twinge on the cross trainer. It's so unpredictable. I had a flare in one of my replaced knees, I had no idea that could still happen. It's a bloody painful disease.

I was advised against any impact sports like running and tennis particularly when new to fitness. They damage the joints of healthy people so with the existing damage and already slow repair to your connective tissue and any existing joint damage it could make things worse.

I was advised swimming and Pilates or yoga until fitness levels were good then maybe try something higher impact but not targeted like running. if you must run I was told a treadmill is better than a road as it takes some of the body impact that your knees and hipswould have to take on concrete.

Looking here for motivation, I have mild RA which is pretty well controlled apart from my hands. I've always loathed exercise and being naturally slim never had to worry about weight loss. Yet I know I should do more. I'm 58 and have never found a sport or exercise that I enjoy so I'm resigned to finding something that I can at least persevere with.
Did pilates some years ago and it aggravated a back problem. Can't stand the relaxation and woo aspect of yoga. I've started Tai Chi but it's boring and also wooy.

I've never run in my life and I suspect it is damaging to joints - all the runners I know have dodgy knees. I do like walking though, and maybe there is a way to increase the impact of this?