hi Katie,

when first diagnosed it is so hard to take in and accept that you have got it. if you read posts on the forum a lot of people's work colleagues etc. don't "get" RA and think it's just the odd ache or pain.

my diagnosis was pretty straightforward with my blood results, DAS Score and so on ..not quite sure why your Rheumatologist indicated that you may have it, unless that's his/her turn of phrase. the drugs you are on are certainly used for RA especially Hydroxy.

if it were me i would make an appointment with your GP, mine is so helpful and explains all to me, especially when i was first diagnosed .. he was the one i turned to inbetween Rheumaology appointments.

i think denial is par for the course as well as being frightened,

but once the drugs work for you there is light at the end of the tunnel.

Suzanne

Hi Katie,
I was very angry when first diagnosed, I had tried to keep myself fit with regular exercise and eating a healthy diet. My husband has Parkinson's disease (he is a secondary school teacher) and we are not sure where his disease will take us, so I knew I needed to keep healthy to look after him.
I found this site a godsend and soon realised that I had got off fairly lightly compared with some people on here. My RA which was diagnosed earlier this year is fairly mild, I still have aches and pains and get extremely tired, I find it very difficult to pace myself, having been used to doing all the DIY, garden etc, I still believe I can carry on as before and then get exhausted like now.
I have doubted that I have RA on many occasion and expect I will carry on being doubtful, especially when I'm having a couple couple of days, then I remember back to how painful my fingers and feet were, even just lifting a cup of tea, or walking to the shops.
I'm on MTX and Hydroxy, only just added Hydroxy to my meds, so need to give it a couple of months to hopefully start working effectively.
There's always someone here to answer questions, or just to compare notes with. People are so friendly and helpful so don't be afraid to speak your mind, as they say a problem shared etc.
I hope your school are good to you and put in place anything that will help you with day to day teaching. It might be good for you to contact Access to Work, they came up with lots of suggestions to help my OH and will also contribute to some items needed to help you do your job.
All the best, let us know how you are getting on.
Mary x

Hi Katie - so sorry to hear of your recent diagnosis, and welcome to this forum. We're all in the same boat here so can relate to your feelings exactly. It's totally normal to feel disbelief, anger, confusion and loads of other emotions as well - this is big news that will take time to adjust to, plus of course you're in pain and suffering strange symptoms that come with RA so that makes it doubly hard to take it all in. Please feel free to vent off here - ask any questions you like - nothing is out of bounds (well there are some forum rules but they're just common-sense!).

I was diagnosed earlier this year, and I'm 54 with 4 teenage children and a normal, hectic homelife. I've always been fit and busy and worked full time, so it was awful when I started getting pains and swollen joints. My GP didn't recognise my symptoms and my blood tests were RA negative, so it took nearly 3 years before I got my diagnosis - by then I thought I was going mad!!!!!! But now I am on the correct treatment, all that has changed - I'm getting my life back and am even trying to go back to work, because I feel much, much better - so although this time is very frightening and confusing for you, there is light at the end of the tunnel. The new treatments that have become available in recent years can really work well and can prevent much of the damage that RA will cause if untreated.

You've been diagnosed quickly and that's good news (although I know it doesn't feel like that atm). You've also been given the right meds, but they will take time to have a full effect - lots of us here are on hydroxychloroquin (HDX) and anti-inflammatories. Your rheumy may also have mentioned other meds like methotrexate and dmards - we have lots of experience here about all sorts of meds, so please ask if you're in any doubts. RA can play havoc with your emotions so it's totally normal to take an anti-depressant like amitryptyline - I take citalopram, and although I feel so much better these days I still like the comfort I get from taking an anti-depressent.

Get lots of rest - and try to think positive thoughts - we're here for you - Sylvia xx

katie hi, not alot to add to this but its real ok and its a long old journey you are on we all have been there but its your road now, this is the best place to vent off and have a cry or giggles god knows we do alot of that,be patient with yourself as tomorrow is another day,good luck and ASK dont just accept things,there will be lots to take in go at your own pace gather all the info, you have to learn what you have before it sinks in,its not the end of life girl,just another way round it,i believe arthur lives with me i dont live with it,cuddles to you,dorothy.

Katie, I can only reiterate what the others have said....that what you're thinking is very normal. I think most of us have questioned whether this can really be happening to us and wonder whether the diagnosis is wrong. I think you should ask your GP about your diagnosis just to get the facts straight in your mind as to how certain your diagnosis is. I would guess that they wouldn't have put you on hydroxy if they hadn't diagnosed you. Secondly I wanted to say that it's early days for you and there is a lot of scope for improvement as your drugs kick in fully and maybe other drugs are added to the mix. As for your employer, mine didn't 'get it' at first but she did go away and read up on RA and has been really supportive ever since. Maybe you could download some NRAS booklets for your bosses to read. You have rights now under the equality Act and 'reasonable adjustments' are required at work to support you in your employment. There is a government agency called 'Access to Work' which may be able to offer you support to help you with your job. They help to pay for my taxi fares to and from work but there are lots of different kinds of help available. I was diagnosed in September 2011 and my life is only just beginning to settle into a new kind of normal now. We are here to support you and answer any questions you may have. We've all been through it and will totally understand what you're feeling right now. Good luck from Naomi, X

Hello Katie

Welcome to the forum but sorry you had to be diagnosed with RA to find us. Firstly you have come to the right place. Someone on this forum has been there and got the tee shirt for every problem you may encounter. Without this forum I would not have been able to get through the last three and half years since my diagnosis. They are a great bunch of people.

Denial? Yes I still go through that. To be told that I have a chronic incurable disease after years of pain was a relief but I still question the diagnosis when some days I can be fine and others in terrible pain. I think it is part of the fight or flight syndrome. We either face up to what is happening to us or we try and run.

You now need to go through a grieving process for your old life. Yes things will change and you must change them to get a good quality of life. Many of us on here are testament that there is life after RA, it just depends on how much you ask for support and how much you are willing to compromise.

As an employee the most important thing you can do for your employer is give them a copy of the NRAS Employer booklet which fully explains your condition to them and makes them realise they need to make reasonable adjustments with your job. You did not ask to get RA, you have a genuine illness and now it is time for them to support you to enable you to keep on teaching to the best of your ability.

Keeping on top of your medication is also another important route to you coping with RA. Take the pain killers even if you are not in pain at the regulated times so that you get a good level of pain management in your body. Do not let it drop and you will be suprised how much better you will feel. I am a devil for taking tablets but force myself to keep on taking them and even simple paracetemol taken to the maximum dose daily can work wonders.

You have entered a strange new world but you are not alone. Keep posting and asking questions as knowledge is a powerful thing as I am sure you will know being a teacher

Take care

Jackie
xx

Katie - if you need to talk - we're here for you - Sylvia xx

hi Katie,

9 weeks into the drugs is still early days, from memory i was told a good 3 months, before another one was added to the mix.

but it's good you were diagnosed early to limit joint damage, that was the same for me.

yes the jab is the depo injection that can bring great relief, i haven't had one for about 18 months now.

it is hard to accept we have RA, i lost over half a stone in the week of diagnosis with the shock of it all. but keep positive and believe that things will get better and you can learn to live with it once the meds to their work.

keep posting we are all here to listen and support,

Suzanne x

Thanks Suzanne and Jane for your replies. I didn't know I could get a copy of the results so I'll ask about that when I see the rheumy again in 3 weeks time. I am trying, with difficulty, to stay positive as I seem to be getting worse at the moment but I think I'm not resting enough. Slowly, slowly I will get there I'm sure.

I really appreciate your support.
Love Katie x

Hi Katie - great to hear from you - things will get better!!! It must be such a relief to get signed off for 3 months - please take the time to really rest. And that means lying down and sleeping or relaxing on the sofa and watching telly!! It won't be forever, but right now your body needs all its strength to fight off the effects of RA. Let your meds work their magic - but it really does take much longer than you imagine at the beginning and I'd recommend having a "jab in the bum" or asking for oral steroids - anything to give some relief from the pain so you can actually relax.

In the meantime focus your thoughts on eating really well - lots of fruit and veg, you know all the usual advice!! If you need to lose weight or give up smoking then now is the time to summon up will power, because it will really help you later on. I joined Slimming world and lost 2 half stone and made loads of new friends (none with RA, but they were very kind when I was so poorly). And you've got the right idea about tackling stuff in new ways to minimise the effort. Depending on whether you have already sustained joint damage, you might find that you can recover all the mobility you once had, but you'll gradually find if gadgets can help you. For example, I found that hiking poles really helped when I was in total pain all the time, but now I rarely need them (only when going out on long dog walks!)

Keep sharing and best wishes - Sylvia