Subject: Newbie to RA

Hi Guys,

Just thought i'd join this forum to be able to get talking to some people that understand how i'm feeling and offer advise.

I'm a 24 yr old girl and was diagnosed with seronegative RA in June. It's been a really hard year so far and i'm struggling with how much RA is changing my lifestyle. I've always been a really active person, I've played rugby for 12 years and represented my county and country at Under 21 level. Unfortunatley i had to stop playing in March when I first started getting symptoms for RA.

Having to stop playing has had a massive impact on me and often makes me fed up, it's not just the playing it's the social side that comes with it too, I can't do half the things I used to. Although the girls in my team are really supportive and still make me feel part of everything it's still not the same. I've taken up coaching our Junior side which I'm really enjoying and it's something I really want to work hard at but I also feel that I need to spend less time at rugby to start dealing with the fact I have RA because at the moment I just feel like i'm using my rugby social life as a shield.

I'm currently taking Enbrel, Methotrexate and Meloxicam which can often make me feel a bit ropey and i'm feeling constantly tired and it's making me snappy with people that are just trying to help so I've decided that I need to start making some changes to my lifestyle and get myself in a place where I can accept I have RA and just get on with life the best and happiest I can and the first step to do this I thought would be to get talking to people who are going through the same as me and maybe make some new friends.....so here I am

I'd be grateful of any advise people can offer about their experiences with RA and what changes they've had to make,

Laura
x x

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Subject: Re: Newbie to RA

Hi Laura I am new to the forum and a similar age to you, I am 27. I was diagnosed with RA and anklosing spondylitis last year although i hope i only have one disease and they are not sure which one.
I also have had to put off plans, make changes to my lifestyle and I am snappy rude and hate people a lot of the time! I think that people just dont understand what arthritis does to you, its not just a pain in your bones or something you will have to deal with later in life.
I see you taking anti-tnf? I am going through the process for that at the moment. It takes a long time, did you find this?
You have had to give up so much and your so young, I really hope things improve for you quickly so you can get some normality back.

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Subject: Re: Newbie to RA

Thanks for you responses guys :) Its so nice to talk to people of my own age who actually understand how you feel...thank god I found these forums cos I was beginning to feel like I was going to crack up lol!!

Cathy - To be honest I haven't had any major side effects with the anti-tnf's but there's always time, I've been on the drugs a couple of months now and overall I think they r starting to take effect but I'm still having my off days, the thing that's getting me the most is the tiredness, do you often get this?

I'm gonna sound dead selfish here but one of the things that's getting me down the most is the change to my social life, I really enjoy going out for a few drinks and been a typical 24 year old but been on methotrexate means this can't really happen anymore. I know people say you can have a good time without drinking but it's kinda hard when your used to been the party animal that likes to act the fool and make everyone laugh...can anyone advise of alternative effective DMARD's?? X x

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Subject: Re: Newbie to RA

Hi Laura,

I'm not as young as you - I'm 45 and feel 90 most days - but wanted to comment on the lifestyle changes. A bit of background first. My primary diagnosis is Crohn's Disease but 25% of people with Crohn's have an RA-type problem called Spondyloarthropathy ( it falls under the Ankolysing Spondylitis group I think). I have a bigger problem with the RA-type problem than the Crohn's but wouldn't have it if I didn't have . . . . .you get the idea.
I don't tolerate most drugs well and have tried so many different things. Currently on Enbrel, Celebrex, Sulphasalazine, and tons of painkillers. I was on 5mg injections of Methotrexate until today when I told the clinic I wasn't doing it any more - too many side effects for virtually no improvement.

Until 18 months ago I was travelling the country training teachers. I live in Suffolk and was driving to Cardiff, Manchester, London, Birmingham and Leeds. I knew I was overdoing it but had this mad idea that if I could JUST KEEP GOING it would be OK one day. Not sure why or how but I was determined that this magical day would come if only I gritted my teeth and just kept moving. I was lugging stuff around, on my feet all day and then the mammoth amount of driving. Of course things started to crumble and I woke up one day unbearably tired and unable to face doing it any more. I was just so exhausted so I changed everything. I was told by my pain management consultant that he was very relieved as I was "..headed for a catastrophic collapse" if I didn't stop. I was so shocked by what he said that I really started to strip down my working life.

Since last January I have stopped driving long distances - no more than an hour now - and most of what I do is working from home with a bit of supply teaching here and there. The biggest downside is that I am completely skint!! I find I am totally exhausted all the time. It's like the less I do, the less I am able to do! Surely that's not how it's supposed to be is it?

I now have to wait to see if they can come up with some other option for drug treatment. My biggest aim is to reduce the pain - I take a lot of pain meds but am still never pain free. If I take enough to be pain free then I end up out of it and unable to function. I can't offer you any answers but hope, among this long ramble, you feel that you are not the only one making radical changes to your life. 18 months on I am more aware of my limitations but also a hell of a lot more angry about them. I only found this forum recently too and have found it very reassuring to read other people's story as it makes me feel less lonely and a little less like a weirdo compared to 'normal' people.

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