new at this: I'm new here and my RA diagnosis is... - NRAS

NRAS

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Nanna71 profile image
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I'm new here and my RA diagnosis is 3 months old tomorrow. The pain I endured for the 3 months before diagnosis is indescribable; probably the only time in my life I wished for death. Now I have an internist (with this specialty) who is helping me get into remission, should that even be possible. He is going with Mexo. and weaning me off Prednizone. Pred. is awesome if you don't mind getting zero sleep, but not a long term solution as it is hard on the body, they say.

So far, pain free has never happened and I don't think it will. I am a woman 71 yrs old and am (was) very fit due to living in a remote area in Canada and having to get firewood for heat - that kind of lifestyle. I went from using my chain saw in June to cut wood to not being able to get the top off a water bottle for the pain I was in.

It's not as bad as that now, although i'm not up to using the saw yet.

Any other seniors out there dealing with this?

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Nanna71 profile image
Nanna71
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12 Replies
helixhelix profile image
helixhelix

Not quite as senior, but not that far off. Similarly I had a horrific introduction to this disease, and yes the pain is indescribable! I call prednisolone the devel's tic tacs... wonderful, but evil. I'm glad not to need them now.

It took a while, about 18 months in all, but I got back to 95% normal. And yes I can still chop wood (as we also live in the back of beyond up a mountain). But take it one step at a time.

So welcome.

Nanna71 profile image
Nanna71 in reply to helixhelix

Thanks so much for the reply. I makes me feel like I am not alone in this. What are you doing for exercise? I am snowed in at the moment and can't get anyone from the village to plow my 2k driveway (I also live in the side of a mountain) but I learned to always keep months of supplies on hand just in case. So the exercise I'm doing is shoveling snow but it's not the best I heard. Walking is supposed to be the good thing. Weight-bearing exercise is not the greatest but, as you probably know, necessary for life here.

I live alone so pretty yappy now that I have had a response. Forgive me for all that. Also feel like life might be worth living now so pain is not at the forefront.

in reply to Nanna71

Hi Nanna, I’m in the UK so don’t have the snow problem to deal with, but RA is is a very painful thing, I’ve had it for 21yrs now (I’m 64) and I honestly think we learn to live with a lot of pain. I’m sure things will only get better once your meds are sorted, and try to listen to your body, there’s nothing wrong with putting our feet up and resting a while at our age! Lol!! Take care. X

helixhelix profile image
helixhelix in reply to Nanna71

I have a smaller size snow shovel.....ok it takes longer but it hurts less! And do things in short bursts, you need to learn to pace yourself with this disease. Presumably you have snow shoes? Great exercise if you don't try to race!

Apart from walking what keeps me functioning is pilates. Lots of information and instruction videos on the internet. Learning by yourself could be a challenge, but it is a really worthwhile thing. I have an app called pilates coach which has a 20 minute routine I try to do at home a couple of times a week, especially in holidays when my weekly class doesn't function.

You'll get there. I couldn't believe I would ever 'recover' at the start, as my hands especially were useless swollen lumps. But I did.

AgedCrone profile image
AgedCrone in reply to Nanna71

Hi Nanna & welcome, sorry you needed to join us.

I'm older than you ...diagnosed 20 + years ago & thought my life was over as I hobbled around on sticks.

But I'm still here....been through quite a few Dmards on the rocky road to getting in to 'Remission'.......whatever that is!

I can't do any regular exercise like playing tennis as anything that jars my joints is not for me. Mainly I walk & do Pilates....without any of the exercises you have to weight bear in arms/wrists,

There are all sorts of ways of dealing with RA....my choice has been to find a really good Rheumy & listen to him......the one thing I am truly grateful for is I had a really bad reaction to Pred.....so never got to rely on it & haven't had to struggle to get off it. I think it's the drug from hell....it draws you in & won't let you go.

Personally I eat what I fancy, I have never found any foods cause pain or swelling.......although all my life I have had "sensivisity " to some foods causing urticaria, but it can be tomatoes one day, & something else the next.

I do hope Methotrexate suits you,& that in the next few months you can tell us things are improving.

No snow here (yet?) in my part of the U.K, but it is very cold.

beanieboy profile image
beanieboy

Hi Nanna, I too am in the uk so don’t have it as cold as you which certainly makes the pain worse, keep yourself warm to hot. As for wielding that chainsaw. If you can contact a neighbour, pay them to do it as the vibration will play havoc with your joints. Take care

CloudTreeDrive13 profile image
CloudTreeDrive13

O m g. I don't mean to be rude but you have got to 71 years old before getting RA. Your lifestyle has done you credit. Hopefully you'll get back using your saw. I'm 60 years old and have had RA for 32 of those years. I wish you well. Take care xxxx

Dodo1943 profile image
Dodo1943

Nana - ‘snap’!

Diagnosed here in UK 2016 in my 74th year! Am now in ‘clinical remission’ on Methotrexate in my 76th year but more concerned with recent diagnosis of Age-related Macular Degeneration so I don’t put in many appearances here .....

Nanna71 profile image
Nanna71 in reply to Dodo1943

I totally identify with the losing my eyesight ongoing event (although seems quite rapid this last year) however, it doesn't hurt so I'm putting off dealing with it for now. Also, losing what little hair I have is an escalating event, likely due to the meds, but that doesn't hurt either, so, first the pain. Wow, this disease sure keeps me busy learning. Today, I'm having what I have started calling a 'good day' - no crying about my lost life, pain I can handle, and a blazing hot fire in the woodstove. I hope you're doing even better than me.😊

daisychains58 profile image
daisychains58 in reply to Nanna71

Staying Positive in the midst of unbelievable angonising pain is the hardest. You seem to have the fighting spirit needed with this horrid disease. I’m still not sure what I have, had but 9 months ago the inflammation was right thru my body, knees so swollen I couldn’t walk or sleep lying down, didn’t sleep more than 2 hours at a time. I put up with this from May till early July, regional hospital here were baffled. Got myself to biggest hospital in Sydney, Oz? Then my elbow started a bit a little bit. Diagnosis was inflammatory arthritis/seronegative RA, I say a cytokine storm. Put on high dose of prednisone in 3 week hospital stay, 50mg then finally the inflammation started to come down, plus 20 mtx. I just had both knees replaced in November and ankle due ASAP. I didn’t start back on any DMARDs after op and have tapered down to 5mg pred. My rheumy isn’t happy, he told me last week on phone to start back on Arava immediately, I didn’t tolerate mtx so he changed dmard. Well I’m not. I’m certainly no worse, my hair after 6 months has finally stopped falling out by the handful but still comes out.My CRP is still 37, was 150 at one point, but everything else pretty normal. Keep doing whatever works for you, try not to overdo anything. It’s a wierd disease all stemming from the immune system.

Gosh I hope you get some relief from the heavy snow falls, that would stress me out being snowed in. I’m 61 and think your awesome doing what you are. Xx. Keep that fire burning

Oh btw my knees and ankle are Ostio Arthritis plus I’ve had 2 hips and a revision since I was 45.

Nanna71 profile image
Nanna71 in reply to daisychains58

Thank you for posting to me. I haven't had anything replaced yet but I know about the huge blocks of time you must have spent convalescing and that has got to take enormous amounts of patience.

Actually, I am not that strong. At it's worst, I cried buckets and paced like an animal until the pain caused some of my body systems to start to break down. An ambulance took me in because I could no longer move. The body temp. went up, oxygen count down, and I thought I was dying (actually hoping for it). It's not perfect now, but a sight better.

daisychains58 profile image
daisychains58

Bless you Nanna71, Gosh that sound just horrible and serious but glad your feeling bit better now. I know what you mean about the pain, I’ve cried buckets too but couldn’t pace cos couldn’t walk lol. One day I just wanted to cut my legs off. Strong pain killers do work enough to dull the pain enough to make it bearable but doctors are reluctant to prescribe here.

Yes it’s been n incredible humbling year for me and I have patience like never before, day at a time.

You take care, sip your soup by the fire and rest.. don’t ever push yourself to the point of exhaustion it’s just not worth it, just do what’s absolutely necessary, your more important. 💖

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