Today marks the start of Rheumatoid Arthritis Awareness Week (RAAW)

Rheumatoid Arthritis (RA) can strike at any age, despite common misconception, it is not just a condition that affects the elderly nor is it associated with ageing.

We are kicking off RA Awareness Week with this video of Phil, Tony, Fiona and Alice who were all diagnosed with RA, their ages of diagnosis span from 18 to 73 years old.

youtu.be/MZyKK9uglD4(Not working as expected?)

#AnyoneAnyAge #RAAW

[AgedCrone]

Very Disappointed.....I was diagnosed 20 years ago..... and yes at first all your dreams do go out the window ....but surely NRAS should be promoting the positive side of all the research being carried out, all the new drugs being used & emphasising contributions to NRAS will bring about more treatments so that going forward we can be very optimistic.

Of course we have all had bad times - bad reactions to drugs- days when we are in so much pain we can’t move...so yes life might be different for a while ..... but please let’s not only dwell on that.

If I had seen those videos when I was newly diagnosed I think I might have just given up .....please.....show people who are getting on with their lives as well as they can....like most of us here on HU.

[Mmrr in reply to AgedCrone]

I think NRAS o try to give a good balance of forward looking optomistic case studies, but we need a big massive dose of reality too.

Whilst many people, do well, many of us don't. I haven't found my drug yet and my condition is deteriorating, confirmed today at my review.

I remain positive, I do push myself, I do things , I get out, I have lots of disappointments when I pay for for holidays /activities that I then need to cancel. I've lost a lot of money doing so....but I pick myself and move on.

But I also need the reality too, and confirmation that I am not alone in the experiences that I have with RD, at the moment they ain't too good. For me that's what this site is about. Sharing stuff.

I really don't want to hear about any more fabulous recoveries...and running a marathon/triathlon or whatever...I am absolutely delighted that some people do so well. Its brilliant for them. But too much of it is so demotivating for the majority of us who are unlikely to make that level of recovery.

I think we need a balance of good luck stories and reality ?

[AgedCrone in reply to Mmrr]

It took me many years until I could wake up without pain.....& there were many down times.........and yes I did get “Oh my Auntie’s got that ” with monotonous regularity So despite the pain & the nausea, plus as you say the cancelled functions & holidays, I kept telling myself that tomorrow just can’t be as bad as today, of course it usually was....but as has been said many times......don’t let it beat you...

I’m sure a lot of people on here could have us in tears if they related their day-to-day lives before they were lucky enough to find a drug that helped them.

I still book two single tickets when I go on holiday....so that I only have to buy another single not a return ticket if I flare & can’t make the outward journey.

We are all at different levels.....a lot of people don’t want chapter & verse, they just want encouragement and kindness from their medical team .....& to find a drug that controls their symptoms. After all ...telling someone they have a higher chance of having a stroke when first diagnosed could quite likely be worrying enough to be self fulfilling!

I thought NRSA publicity was going to make clear the difference between RA & OA to the general public ......thereby encouraging donations for research......I’m not comfortable how those newly diagnosed will receive all the doom & gloom in the Ads & Videos now being put out.

As an ex nurse you want to know as much as possible...l on the other hand just want to know the answers to my questions.......time enough some day to consider strokes & heart attacks....let’s get the rotten symptoms sorted first.

Twenty years ago I certainly would not have wanted to see those posters...I felt bad enough having RA...without having more to worry about.

I do really hope that you find the drug regime that suits you very soon....but do try not to fight your symptoms too much......stressing really is the enemy....acceptance is often stress relieving.

Of course I don’t take my own advice ...4 months ago I was told I was in remission.

Next week I’m back in the hospital for another infusion......dammit!

[Mmrr in reply to AgedCrone]

I think I have a reasonable balance, I'm not stressed, but I like detail, I find it stressful not knowing.

So I was told today that Baricitinib that I'm starting soon has an increased risk of DVT and embolism and I'm overweight. I'm an ex nurse too, so I've refreshed my learning by looking up leg exercises today and other tips and hints to keep me well. I'm settled and happy now, I wasn't stressed just wanted to know. There is a difference.

I would have gone out this afternoon, but had to reign myself in as I have a photography course booked and paid for tomorrow, it's unlikely I could do both and feel well. I've settled myself this afternoon reading and diddling. Fingers crossed that I'll be well enough to enjoy the course tomorrow.

I hope the infusion goes ok AC.