New to all of this: Hi, I have been diagnosed with RA... - NRAS

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Hi, I have been diagnosed with RA for a year. At first, I had a lot of problems with my right hand and wrist but I got treatment early (cocktail of steroids, methotrexate and another DMARD which I won't attempt to spell). Now off steroid but continue with the others. I have some bad days but I guess my RA at the moment is quite well managed. It's the unpredictable side of it, some days it's like nothing is wrong, then you can wake up the next and it's like - hmm my wrist is really sore and stiff. I struggle with that but am starting to accept it's part of my life now. I missed my exercise for quite a while but have now got back into it. I am trying to jog again but sometimes my left knee is very un co-operative! Probably not the brightest move on my part but I am stubborn. I know swimming is good but I have fear of putting my head under water - Lol! Has anyone tried Pilates, is this beneficial??

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I have done Pilate's, Yoga and Tai Chi which all help, especially with tension and stress. Good for core muscles and balance too.

in reply to

Hi, I would like to try Pilates as my core muscles could do with some work! There is a class at my gym I would like to try. I was worried that I would have probs with my right wrist as I can't put too much pressure on it. I'm quite into cardio but need to work on my muscle strength as this has weakened in the last year. The only Pilates I know is the 'plank'. Have never thought of Tai chi but have tried Yoga.

in reply to

A really good teacher will find ways to adapt exercises to suit you if you ask. So worth a try.

Welcome to the site firstly. I don't know about Pilates but I do know tai chi is great. I walk a lot with my dogs and I believe that's much better for your joints than jogging because its less impact on them but really good if you can brisk walk everyday. I know it sounds daft but I use the Nintendo Wii fit plus and the Zumba and these are great for a work out on the soft surface of my living room floor. I try and do this and exercise class plus tai chi all through the week and I feel it keeps my RA at bay but I may just be lucky. I was on MTX but had to stop five weeks ago because of possible rare side effects to my peripheral nervous system . Tried and failed two other DMARDs. Not sure what's next but RA is still giving me peace thankfully. My right hand and wrist and elbow are also my worst affected parts usually. Stay around here its a really good forum. Tilda x

in reply to

Hi, I love walking too but I am without dog - wish I could borrow one for an hour - lol. I have to say that since exercising I feel better. I love going out first thing in the morning but do experience more aches than i used to. I know jogging doesn't help with that but mood wise I feel quite lifted. Need to find the balance I guess. Is your right hand your writing hand? as this is the case for me. The bone on outside of wrist can really stick out, it looks well peculiar and my thumb has changed shape yet doesn't cause pain. I used to try and hide my hand so people wouldn't notice but I guess people don't really pay attention to hands. I look at everybody's hands now, I am intrigued, especially when I go to Rheumatology. So are you not on any meds at the moment or will you qualify for the biologic meds?

in reply to

Not sure what's next for me Charlotte. Just waiting to see if the neuropathy goes away and the RA returns with a vengeance as it did last time I stopped MTX - all in my right arm I might add! Yes it's my writing hand too. I think this makes sense because it's the arm that does most of the work. I'm an artist so it has really affected me in the past but luckily Naproxen usually gets it back to some kind of normality.

Hey I'm obsessed with hands too! I think my right hand is wonky now - two of my fingers have turned round to face my little finger. But I asked my rheumy and he just shrugged and said "no swelling this time though so that's what matters" - well maybe to him! And my x-rays of six months ago revealed nothing untoward in my hands either apart from a bit of early "wear and tear". But my right hand now fans and pinky sticks out with nail almost completely turned away from me. I don't think this looks like OA hands that my friends sometimes show me at all! I live in the Orkney islands so our rheumy clinics aren't full of rheumy patients as it's just in the a&e waiting room but I inspect hands routinely now anyway! Tilda x

in reply to

Glad i am not the only one with this obsession, i do attempt to be subtle! I go to addenbrookes in Cambridge so i am spoilt for choice. Some people smile back at me like it's an in joke. My consultant has beautiful hands - lol x

in reply to

Well I'm a bit of an oddity these days Charlotte. At first, when RA hit them hard, I got really depressed about these changes but now they are no longer swollen - just rather wonky, I've become very fond of them!

To explain - I used to have great cracks of eczema that was so ugly and painful and I could see people wince when they saw my hands and arms (and other parts such as back of the knees too). And when I used paint it used to gather in the open cracks so I'd have to cake them in barrier cream which would also gather - so then they would be all colours of dreadful yiuck!

So relatively speaking what's the odd turned finger now eczema has gone away? And the pain of this horrible raw eczema was as bad, in a different more superficial way, as the pain of RA. And speaking as a visual person, if I can't see it then I tend not to believe it so it does cause rather a lot of denial issues when my hands are white and smooth just now!

Ronnie63 profile image
Ronnie63

Hi Charlotte

Welcome to the site :-)

Recommended exercise is of the low impact variety, so jogging would not be on that list I'm afraid. It's a funny disease, we read that it's symmetrical. but like you, one of my hands suffers more than the other, my writing hand unfortunately :-(

There are some publications on this site concerning exercise which may be worth a look, the emphasis will be on low impact and pacing, albeit that gentle exercise is good to keep the joints supple

Good luck with your ongoing treatment :-)

Ronnie

in reply toRonnie63

Hi Ronnie, my right hand is also my writing hand - typical and my left hand is fine!! I compromise with some brisk walking as opposed to jogging but sometimes just really want to run. Before diagnosis I was quite active, and then after diagnosis i went the opposite way, thinking that i would injure myself and cause probs in other joints. I love walking out and about but need to find other forms of exercise that my knees won't complain about. Hope your treatment plan going well.

Sharon56 profile image
Sharon56

Hi Charlotte

welcome to the site. Yes low impact exercise is best for us RA warriors.

I believe aqua aerobics are good too. Take care. Sharon

in reply toSharon56

Hi, I've not long joined NRAS and went to my first group a few weeks ago and my consultant was there giving a chat on pain management. I don't think it was supposed to be funny but a lot of people were laughing at his humour. He recommended NRAS to me. I have just bought a laptop so thought i would check out the chat forum. I think i will have to stick to exercise on dry land but will let you know if i venture into the water. Will maybe ease up on the jogging though otherwise my knees and me will fall out.

helixhelix profile image
helixhelix

A year is not a long time in RA world, although it surely feels long when you're in pain. But I found it took a year to get my RA under control, and then another year to get back into some sort of shape and understand what I could & couldn't do without creating more problems. So take things gently and step by step and you might find that you can do nearly everything you want to. I've tried pilates, and found it worked well for me as the teacher adapted stuff to suit me. But sadly no longer live near a class, and I'm rubbish at doing things by myself at home. Even so, exercise is an essential part of managing my RA for me. I do at least an hour of something a day, often much more, and find that if I don't then I turn into concrete. So a day on my bum and I'm in pain and achy. Hope you find something that suits you, as it can be so helpful. Polly

in reply tohelixhelix

Hi, i think so far i have been lucky. My symptoms started in April 2012 and i was diagnosed in June. I responded well to the meds with little side affects and by September i felt a lot better but i know that can change at any time. I did lose my confidence to do things though. Mood wise exercise has been good for me but i know the jogging is affecting my knees and i don't want to create further problems. I still enjoy brisk walking but need to improve muscle strength. It's funny, you can read books but to understand RA and how it affects you personally is a totally different ball game.

Luthien66 profile image
Luthien66

Hi Charlotte, yes a big warm welcome to this forum, as you've probably seen its full of very caring people always ready to give you advice & support and sometimes just a big virtual hug if you're feeling really low.

Like you, I suffer mostly with my right hand wrist & now right shoulder has joined in ( didn't want to be left out...lol ). If I'm having a particular bad day my left wrist will kick in along with a couple of finger & knuckle joints on my left hand. I also have problems with a few joints in the toes of both feet.

However, I've moved onto anti-tnf treatment a few weeks ago as the DMARDS stopped working last year. I am noticing improvement now mostly in that I feel better in myself and those awful full body aches & pains ( kinda flu like ) have stopped. So at the mo feeling positive even though still pain in right hand etc....

I've gone back to swimming as I get so much relief from just being in the water and like you had a great fear of putting my head under water so the way I conquered that was to get some nose clips.....not the most attractive look but I can now go under water with confidence.

Hope you take care of yourself and manage to continue staying pain free as much as possible. Xx

francherry profile image
francherry

Hi Charlotte,

Welcome to the forum! I know what you mean about jogging - used to jog every day but don't do that anymore - just lots of brisk walking! Interesting that you go to Addenbrookes hospital, years ago (around 1999) I did hospital radio there as a volunteer on Sunday nights & collected requests from patients to play on the show! (I was a patient on children's ward D2 back in 1987 & wanted to give something back). A few months ago it was in the press that brisk walking has greater health benefits than running, which is good news: (here's the article if you're interested) theguardian.com/lifeandstyl...

Having said that, my specialist nurse knows someone currently in drug-induced remission who jogs & is about to run a marathon, so it is possible. It's my goal to at least do a 5k for charity when I get better but for now sticking to brisk walking. If you don't want to swim, does the hospital offer hydrotherapy? Just 4 sessions of this (gentle exercises in the water) made a difference and physiotherapy exercises have also helped strengthen my muscles. I've also heard Pilates is worth trying. Not sure if you've heard of classfinder but there's loads of Pilates classes in Cambridge there classfinder.org.uk/fitness-....

All the best, Fran

emma36 profile image
emma36

Hi there, I am also fairly new to this site but finding it really helpful.

On the subject of exercise, I am pretty stubborn like you! I have had RA for 10 years and during that time have had periods where I have been really well. When I am like that, I run like a mad woman and swim for miles. I know the running is a bad idea, but I refuse to give up everything I love because of this disease. I listen to my body and never run if my joints hurt.

Swimming is great although even that is hurting my wrists at the moment. I compromise and just swim with a float, that way I work the rest of my body without hurting my wrists. You could also do this without going under water.

I too had a fear of putting my head in water. Had some lesssons a few years ago and overcame it. It opened up a whole new world to me. Can highly recommend it.

This is a frustrating disease but you will learn to adapt and find a way to still live a great life xxxx

cazh profile image
cazh

Hi, welcome to the site. I was diagnosed 18 months ago and am currently doing well on MTX plus anti-inflammatories. I've found exercise really helpful. Over the summer I've done quite a bit of swimming (never put my head under water which probably isn't great for my neck but doesn't seem to have caused any problems) I've never tried pilates but do a weekly yoga class, which is so relaxing, most of us fall asleep at the end! I can also recommend spinning classes. Sometimes it can be a problem for knees, but I just adapt the session to suit myself and the way my knees are on the day. I've found it great for overall fitness. Hope you find things that work for you.

sciqueen profile image
sciqueen

Hi

Welcome to the site. Any low impact exercise is good. Road running will affect your knees as the impact from the surface as you out foot down Will travel to your knees, better to do it on a tread mill.

Glad your meds are working, and the unpredictability if the disease is common. Ensure you pace, get plenty of rest and stop when you feel any aches/pain or even when you are tired.

I'm nearly 2 yrs in with the disease and I'm trying to not let the disease control my life. Where I'm feeling much better and have good days I try to be more active. I'm accepting I can't do all the same things I did before or having to adjust to be able to do stuff again. But hey that's life. Of course I gave bad days also, as you also will. Hopefully the good days will out number the bad!

Stay well & savour all your good days

Sci x. :)

lynn-bel profile image
lynn-bel

Hi and welcome to this site - sorry that you have to be here (if you see what I mean!). I also used to go jogging a lot and do aerobics but have replaced it with walking and like Tilda I use the Wii Fit Plus a lot as I can tailor it to my needs and what I can and can't do.

I am terribly afraid of the water so will never do aqua exercises and I did Pilates at home for a while but due to bad knees and wrists I can't get down on the floor (or up again!) so had to stop and my yoga class wasn't good as most of it was on the floor but I do some of the yoga on the Wii Fit as they are standing ones. Tai Chi was wonderful and I am going to get back into that if I can find a class nearby. Now I'm retired I can get to day time classes, just need to find one!

I am on mtx that suits me well and my RA is well controlled (diagnosed in 2000) - I use Naproxen when needed and pop paracetemol for pain.

See if you have a walking group in your area - I have one that I go with on country park walks - usually 90 mins through some lovely countryside - don't have to "book" anything, just show up and it's free - all you need are good walking shoes, and appropriate clothing. It's nice to "socialise" on the walk as well if you want to. It gets the endorphins going and I feel so much happier afterwards.

It does take time to adjust to this disease, so be patient and you will find tons of info. and advice on this site. Besides taking your meds and generally taking care of your health, I would strongly advise - concentrate on what you CAN do and don't get bogged down with what you CAN'T do! This is a bit life changing but change isnt always a bad thing.

Take care

Lynn x

Hi Charlotte and welcome to the site:-)

Pilates was recommended to me by the spinal surgeon that I see and the local Nuffield Hospital Physiotherapists run a 6 week course ensuring that you have good technique - 2 physios to 6 patients, so a good ratio. I've noticed other physio practices offering 1:1 Pilates too. Tai Chi is particularly good - we have a Tai Chi class for people with arthritis that has allowed me to use a chair, crutches or whatever I need to participate.

I use a cross-trainer at home to maintain muscle strength without impacting my joints.

I too used to be a runner, competing in women's road races for years. When RA first attacked my feet I thought that it was all the running I'd done - on hard surfaces before the advent of properly fitting and cushioned running shoes - coming home to roost. I loved running, I felt really strong and free and able to depend on my body. The unpredictability of RA symptoms and feeling vulnerable in not able to depend on your body are big things to come to terms with and that takes time.

Glad you've found us now - keep blogging:-}

Cece x

summer32 profile image
summer32

Welcome to the site.. I too have done pilates and found it helps, I walk short distances on a treadmill rather than run or jog to try and keep joints going too, swimming or aqua aerobics is good too in a warm swimming pool x

lorann profile image
lorann

Glad you found us, Charlotte! I have had ZPsoriatic arthritis for 40 some years and RA for 11, so no stranger to any therapy out there.

Tai Chi is the best and as said above, you can use a chair, or crutches, whatever you need to do th slow and easy movements.

Also, at home, my son and wife bought me a Recumbent exercise bike. Wonderfull for keeping strength in legs and knees. You can adjust the tension as you get more fit, it also measures calories used, keeps your heart rate and blood pressure measurements, and coaches you to speed up or slow down, according to the program you set it for.

I often don't do all that, just get on and ride as I'm watching something on TV. Time goes faster that way. I'm up to over 2 miles in 30 mins, so that is about all I do right now. I get plenty of "taiChi" type exercises out and about my property caring for my gardens and container plants. That will soon end, then I will try to put more time on the bike.

The bike is wise investment! Good luck. Loret xx

Nildesperandum profile image
Nildesperandum

Hiya. I tried yoga this week and found it really beneficial. Definitely advise you giving it a go. Sally xx

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