Introducing myself: Hello i was diagnosed with severe... - NRAS

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Introducing myself

Annie122
Annie122
36 Replies

Hello i was diagnosed with severe ra when i was 16 im now 31 ive also had a total hip replacement five years ago ive just joined this today how are you alll keeping? Is this site world wide?

36 Replies
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Yvettebloo

Hi Annie! I think there's a few from other countries but from what I've read most are from the UK. Welcome and lots of hugs! I'm 28 and was only diagnosed two years ago.

Sounds like you have had a rough ride. Sending love x

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Annie122
Annie122
in reply to Yvettebloo

Hey thanks for the reply its nice to bo im not alone in this how is your ra ? Gentle hugs xx

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Yvettebloo
Yvettebloo
in reply to Annie122

It was unbearable until last week when they upped my daily steriods to 20mg. Was struggling to look after my babies but much better now :)

How about you? Where do you live xx

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Annie122
Annie122
in reply to Yvettebloo

Hey i sent u a private message :-)

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Hidden
Hidden

Welcome, Annie.

Although NRAS is a UK organisation there are members outside of this country.

Hope you will find useful info and good support here.

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Annie122

Hey thank you very much xx hope your well?

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enthusiatjc

Hi Annie, Welcome to this wonderful community. I too was about 15 when I was diagnosed with RA and I am turning 31 this week. Sorry to hear about your troubles. I hope you are staying positive. I am in London at present, but I was a member here even when I was in Canada. Everyone here is so supportive and always ready to answer any questions you might have.

Hope you find this place as wonderful as I have :)

J

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Annie122

Hey thank you very much i joined here today i like it so far it seems very good and people are friendly :-) hows ur ra now? X

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enthusiatjc

My RA has its ups and downs. I had a flare up last year, but it seems better now. The dropping temperatures are making my joints a little stiff and sore, but its nothing that can't be managed :) How are you managing? Where are you located?

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Annie122

I find the cold weather tough on ra but i have been a lot worse in the past so im thankful :-) do u use any other support groups? Im from the north of ireland :-) x

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enthusiatjc

I used to go to these meetings in Toronto organized by The Arthritis Society and found them super-helpful. I'm fairly new to the UK and haven't discovered any in-person meetings so far. I am not aware of any other support groups either. But this community has been a good resource so far. Would be nice to have some actual meeting groups as well.

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Annie122

Im in a few other support groups in the uk on facebook they are good too :-)

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enthusiatjc

Oh I wasn't aware of any groups on facebook. Do you mind sharing the names of these groups so that I can join as well? Thanks :)

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Annie122

Rhematoid arthritis in the uk

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Annie122
Annie122
in reply to Annie122

Uk rhematoid arthritis wonky club this is a great one i love it

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enthusiatjc

Thanks :)

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Annie122

No problem ill probably see u on there at some point feel free to message me anytime :-)

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sylvi
sylvi
in reply to enthusiatjc

Message me and i will tell you the groups i am on on f/book darling.xxxx

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sylvi
sylvi
in reply to enthusiatjc

Speak to the admins and they will guide you to some groups near where you are darling. I know people from Canada and America and i believe there are people from Europe and Australia to.xxxxx

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nomoreheels

Are any of these groups within reasonable travelling distance for you? nras.org.uk/groups/region/l...

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enthusiatjc

Yes a couple of them might be, i'll find out more about them, thanks :)

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Annie122

hey how are you today?

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enthusiatjc

Hey Annie, I'm doing okay today. Some stiffness in my finger joints, but its manageable. How are you doing?

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Annie122

hey im the exact same as you my hands are stiff and painful apart from that im ok thanks :-)

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enthusiatjc

Must be the weather. I also skipped my dose of methotrexate this week. It was my birthday and I decided that I didn't want to feel crappy and nauseous, so I skipped it :D These little things give me a weird sense of satisfaction when I do what I want rather than what the body wants me to do :)

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Annie122

yeah it could be the weather happy birthday hope you enjoyed it :-) i use to be on mxt so i no how u feel on it i hated it to be honest it made my hair fall out in lumps and made me nauseous too :( did you check out the support groups for ra on facebook?

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enthusiatjc

Yes, I had a lot of hair fall too, but it has gotten better with time. Nauseousness doesn't go though. I've had it since I started mtx 15 years ago. It's so bad that just thinking about mtx gets me nauseous. I did look at the facebook group you mentioned. Looks like a fun group. I have requested to join. Waiting to be accepted :)

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Annie122

ah thats cool hope you enjoy the groups on facebook :-) hope you enjoy them as much as i do :-)

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sazlav83
sazlav83
in reply to Annie122

Where abouts in Northern Ireland are u Annie122? This is where I am also!! X

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Annie122
Annie122
in reply to sazlav83

The north u?

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sazlav83
sazlav83
in reply to Annie122

Antrim x

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Annie122
Annie122
in reply to sazlav83

Cool

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sylvi

Yes there are people from all over the world and some lovely people as well. Welcome to our site and i am Sylvia and i live in the Midlands in the UK. This is a great group and we have many people who will offer helpful advice and support. We also have a lot of fun as well.xxxxxx

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nomoreheels

Hiya Annie, welcome. We are a very supportive group so I hope you find it helpful being here. I wasn't diagnosed until I was 48, in 2008 but had both RD & OA confirmed at the same time.

The site is run by the NRAS (National Rheumatoid Arthritis Society) in the UK but we welcome anyone from anywhere in the world. We have had an increasing number of overseas members particularly lately, people from the US, Canada, Australia, New Zealand, France, Spain, Italy, India, all over (apols to anyone I've left out!). It's really interesting comparing notes on how Rheumatology differs from the UK, my experience of diagnosis & treatment was quite different as I was living in Spain & only returned to the UK in 2013 so it's been especially helpful for me.

My niece was diagnosed whilst at high school, around 13 years but fortunately hers seems to have burned out without any erosions, she realises she's very fortunate even though it was difficult at school at times though they did supply laptop for her to use. She had a blip with her first child but it settled again. I'm just hopeful her daughter isn't diagnosed when when she reaches her teens.

I hope you find it helpful, we've lots of experience between us we can share, I'm sure you have too being diagnosed from a young age. 😊

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Amkoffee

Hi Annie I feel so badly for you. In the US where I live doctors are very hesitant to do joint replacement on anyone under 50. It's an insane policy if you ask me but they say that the later they do the surgery the longer it will last through their life. I've heard that joint replacement only last about 10 years. it's not really something I've ever had to experience thank goodness. You didn't say where you were from but I'm assuming you're not from the US. This site is worldwide but I think you'll find more people from the UK than any other country.

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poemsgalore1

Welcome Annie, I've had RA/RD for 30 years. Started at 36, now I'm 66.

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