Just Diagnosed with RA

[Mayna_Dichiara]

Feeling a bit of shock and sadness - wondering what my life will be like now. I've read some posts from a few years ago on this site. Want to get involved and learn and talk about my new Disease. Can't believe it is happening to me. ha

[earthwitch]

Sorry you had to find us here, but welcome. Stay positive. Message boards like this tend to be used most by people at the opposite ends of the RA spectrum - those new to the disease, and those who haven't responded quite so well to treatment and are still having problems. The vast majority of folk do respond to treatment well, and just end up getting on with life. I have a good friend who had her RA under control well within a year, needed to tinker with her meds a little towards the end of the first year, but for the most part barely notices her RA, when initially it was enough for her to take early retirement. Rather than being disabled in her retirement, she is full of enthusiasm and doing an awful lot more than she ever thought she would, with absolutely minimal pain or problems, and not even any noticeable side effects to treatment now she has got used to it. So stay positive, work with your rheumatologist and nurse and hopefully you will get onto the right combination of treatment for you very quickly and your life will be back on track again.

[Betzz in reply to earthwitch]

Bravo! Couldn't have said it any better

[denvajade]

Hi there! Sorry to read you have RA . I got diagnosed at 55 but could have had it earlier as I have Fibro as well. Shock is probably what we all feel at first. I went straight onto methotrexate pills for about seven years and the started injecting myself. Currently I am on nothing due to other health issues, fortunately I seem pretty stable. Not too much damage going on. The most important thing is to pace yourself, I get extremely tired and need to rest frequently. Let your friends and family know that it can cause chronic fatigue and not to expect too much from you. Wishing you well.

[MaryTH]

Hi, I felt like that to. I was diagnosed in July this year so still coming to terms with it. This site has been really helpful to me as I am sure you will find. Talking definitely helps. Take care x

[magglen]

From your lovely picture you look young.... I was 70 yrs when I was diagnosed ten years ago. The main thing is to get treatment early so push for that. I put a lot of symptoms down to old age and didn't go to the GP early enough so am left with deformed hands and feet. I have been on the anti TNF medication, Enbrel, for 7 years [or thereabouts] and from being bedridden I am back on my feet. I walk 2-3 miles daily [weather permitting] and am a keen rambler [pensioner's bus pass group] and walk up to 5 miles with them once a week. Modern medication is so good and constantly improving. Don't be afraid to be assertive with the medical profession, make a list of questions to ask when you have appointments and don't put up with any problems you may have.

I hope it goes as well for you as it has for me xx

[oldtimer]

Welcome but sorry to hear about your diagnosis.

Ask as many questions as you want on here, but please remember most of the posts are from people who are having problems. The vast majority of people are just getting on with their disease, treatment and life and don't feel the need to post.

The NRAS website is brilliant at giving the answers to many of the problems that we have and information about treatments and management.

Your main difficulty will be coming to terms with having a long term condition. It is a loss just like bereavement, so expect to feel angry,frustrated and sad.

I've found through the years that the best way of managing is to be treated vigorously and as soon as I can to start back exercising. I eat a balanced mediterranean diet, but, for me, without meat. There is lots of information about diet, but be careful not to miss out on any essentials.

And be assertive about your needs with the NHS. Good luck.

[Fra22-57]

Yes when I was diagnosed I thought it would be a quick fix but its not fixable only manageable with medication.I was first diagnosed with Fibromyalgia so having both takes its toll on me and now I have another auto immune condition.I had to give up work before I got to be diagnosed as I was that bad and that's the biggest thing that's effected me mentally as I have little contact with people now including family.I have had it for 3/4 years and have only just come to accept it and have tried loads of medications that haven't worked

When I first found this forum I thought it would be all about people moaning about their selves which it is in a way but these lovely people also help you with problems and you get to find out about the things the doctors don't tell you.I hope you get on well.

[stbernhard]

Hello Mayna, I hope you will find help and solace on this forum. RA is anasty condition, but it's also manageable and with today's medicines a lot of people can look to the future with optimism. I've lived with it for six years now and once my medication regime was settled I have been able to get control of my life back. You may experience lows but then the highs will become more frequent. The most difficult aspect for me was FATIGUE; what it did to me and how anybody who has not experienced it finds it hard to comprehend how hard it is to deal with it. Having said that it now hits me less frequently and I have learnt to look at it as an uninvited, unliked relative who's come to stay for a while. Not pleasant, but there is an end to it. I'm beginning to ramble a bit now, so I wish you all the very best and hope to hear from you again. Big hugs. P.s Just one more thing: A lot of people may disagree, but apart from NRAS we have to thank all the dedicated people in the NHS who are there for us and help us along the way.

[flow4 in reply to stbernhard]

I do like your 'uninvited relative' analogy - I think that's a useful way of looking at it - thanks!

[shazbat]

Hello Mayna, I agree with all the comments, please remember there are good and bad in any disease, I was diagnosed at 36 I'm now 57 and it has been tough. However when I was diagnosed they didn't have the treatments they have now, there were very few options, But RA is now treated very seriously and is treated more aggressively to stop potential damage. You can live a relatively normal life with the right meds. But one piece of advice. Explain to your family what RA is, explain about the fatigue and flare ups, because when you say RA you invariably get " yes I have that in my knee ". They need to understand you need support and understanding while you deal with this condition. And ask a thousand questions on here if you want, there is always someone who will answer. Finally make sure your fully informed by your specialist about your condition and your options. Get the Rehumy nurse's contact details at your first appointment as they are the first line for your condition. I hope everything goes well.

Take care

Shazbat.

[DC56]

Hi please don't start feeling like a victim once you get your RA under control with the doctors help keep telling your self you control it just try to be positive I Know it want be easy but you have all the people here are ready to help if they can good luck we are here for you X Dawn

[allanah]

Hi I was diagnosed four years ago and I'm a great believer in trying to keep positive. It's easy to get a bit down when you get the news but we are so lucky to have specialists and new drugs that can control the disease.

A word of caution like all websites we come on here for support in bad days , but don't really on good days. I have many friends with RA who work full time, look after the kids etc etc with just tablets once a week. So let's hope this is you!

But the folks on here are lovely and have all been in the same boat as you which I found comforting as I remember feeling very alone initially.

Look on the NRAS website if you haven't already it's packed with advice. Their helpline was a lifesaver to me also and yes some days I called it more than once to chat!

Get leaflets about the disease from them and show your friends and family if you want, I found this helped them to support me.

So lovely to have you here and let us know how you get on! Axx

[medway-lady]

To be honest I do not suffer with RA I live just as I did before, growing older very disgracefully and whilst some adjustments have to be made as I can't get the lids of jars sometimes and use scissors to get into a packet of crisps and don't mention tear off strips on Revels which actually don't!!

It is best to be optimistic for most its a disease that can be well controlled and side effects minimal or non existent. I came off MTX although I had no side effects bar hair loss, my consultant decided to try something else which has an unprounounable name but in America is known as Arava and so far its great. OK side effects for 1 in 10 are common but that means in reality 9 out of 10 get benefits with no side effects. So its a journey and best advice never read the patient info stuff as you'll die of fright!!

[Kathyfitz12 in reply to medway-lady]

Hi Medway Lady.....we are starting to see the name Arava here now.....it is better known here as Leflunomide.

One daft thing I find is it has just started to be dispensed in plastic bottles with child proof caps. Child Proof? They are people proof! I tried a knife, scissors, tin opener....you name it- I tried it.

Eventually resorted to male neighbour to get at the bloomin' pills.

Now have big reminder to ask pharmacist to open the bottle.

Go Figure who thought of putting this drug in such a container....unless it's some daft EEC ruling?

Ah well onwards & upwards....I have been on Arava for 7 months now & apart from a bit of nausea in the first few weeks it seems to suit me.

Kathy

[medway-lady in reply to Kathyfitz12]

Hi Kathyfitz12.... I'm in Kent, like Medway towns, North Kent and so sorry if you thought USA. I wish though! I knew it was an unpronounceable name and sounds so much less frightening as Arava. I asked why we can't have drugs with nice names and GP said a lot of them think the same, our names do sound scary. I know what you mean my husband though if asked to open a pet of something nice seems to think he gets half!! lol

I also take Thyroxine that is so cheap to produce but is packed in so much plastic its unbelievable. And the Riveroxaban is French and you need to speak it as the English instructions are in type size 6!!

The world has gone mad, where did common sense go? people proof as you say and why?

[nomoreheels in reply to medway-lady]

Try using it's medical abbreviation LEF, far easier.

[medway-lady in reply to nomoreheels]

Don't sound so nice though! lol Arava sounds like happy.

[Hidden]

So glad you found us, but very sorry that you need to be here.

I was diagnosed at 36, 64 now. For the first 25 years I hardly knew I had RA as the meds kept me well. But after a cancer diagnosis and treatment in 2012 things have become worse as have the side effects of the drugs. I hope they get your RA under control quickly. xx

[Mayna_Dichiara in reply to Hidden]

I posted but cannot find my post or replys - ??

[MsEm]

Hello,

Sorry to hear you've been diagnosed with RA. I was diagnosed with the same earlier this year days before my 40th birthday- what a present! After a few months of sorting out the best medication dose, feeling a bit rubbish and low, it's now as if I don't have it at all (apart from some mild stiffness in my hands in the morning).

I looked upon the diagnosis as a chance to change things in my life: improved diet, more exercise, taking up yoga and meditation. I'm not sure I would have done all these things had I not had the diagnosis, so in an odd way I'm seeing it as a blessing (of sorts!).

Don't be too disheartened, once it all sinks in and you get the right combo of meds, you'll find a way to live life to the full even if it's not the way you necessarily imagined. It's all an adventure! Like the other contributers have said, this site is great for support if and when you need it. Good luck! X

[Hidden]

Hello. Welcome to this community - I'm sure you are feeling turned upside down by this diagnosis. But as many here have said things will almost certainly improve. For many people it's not the end of the world at all but it takes a while to realise this - for some it's even an opportunity to take stock, to fine tune or improve your diet and find a gentle exercise regime, seize the good days and rest up during the less good days, make new friends (and lose the less sympathetic ones!).

Take care and I look forward to seeing more of you here, getting support and advice for as long as you feel you need it. Twitchy

[nomoreheels]

What a happy, easy smile you have, I don't like to think of it not so. I'm so sorry you've have need to find us. I appreciate how fortunate I was for my Consultant taking time to explain the disease to me, I do wish some weren't so busy & lost in their profession, forgetting that when they give a diagnosis it's likely to be very concerning for the person hearing it.

We're here, no need to feel alone. There are many like me who generally do very well save for the odd hiccup, usually self imposed, overdoing things because things are going well. It's ok, it happens, we just need reminding we're no longer wonder woman now & again.

If you haven't already have a look through the NRAS website nras.org.uk, you may find the 'Living with RA' section particularly reassuring.

Any questions fire away. We'll answer with honesty & share any experiences, though do keep in mind we're all different & the disease affects us equally differently.

Take care for now.

[bshumate]

Sorry you are dealing with this but with time the initial feelings of shock, sadness and worry will subside and be replaced with I am going to be okay. I can deal with this. I am going to get support and arm myself with knowledge. Knowledge is power. The most difficult thing ahead of you right now will be finding a medication(s) that will get you mobile and halt progression. That can be frustrating. But stay positive you may be lucky and get on the right med for you right away! And I hope you do! Fortunately, there are so many effective meds now and to be honest I am grateful if I was going to get RA I got it now and not 20 yrs ago. Things will be alright and you will go on with your life and be happy. Just give yourself time to adjust. What also helped me quite a bit is changing my diet that really has helped. Here in the US we have a real problem with garbage food. But it slowly is getting better. People are educating themselves and making better food choices. I found by cutting out gluten/sugar(bad sugar high fructose corn syrup) eating mainly fruits and vegetables and fish (wild caught only) lean meats such as turkey/chicken. It will make a tremendous impact on how you feel and decrease inflammatory markers. Turmeric has natural anti- inflammatory agents. Certain fish have omega 3 like Salmon which is good for people with RA. Please do not start these things without consulting your treating Physician first. The best thing for you may be a totally different route. Wish you all the best.

[Hidden]

Hi Mayna,

and welcome to the forum. It is a very good place to come for help and support but as has been said, many people come here when they have problems and so you don't necessarily get to hear about all the success stories of which there are many. I have put a link to our website below for you. We have a really good publication for those who are newly diagnosed and I have put a direct link to that as well:

nras.org.uk/

nras.org.uk/publications/ne...

Certainly there are very good drugs to treat RA now but it can take a while to get the right one as there is no one drug that works for everyone and it can be a bit of trial and error in the early stages. If you would like to contact us to talk about things, our contact details are (depending where you are, we are a UK based charity):

Email: [e-mail]

Tel: [phone] Monday - Friday 9.30am - 4.30pm

Regards

Beverley (NRAS helpline)

[MickeyJoints]

I've only recently been diagnosed (4 months odd) and found this forum in my travels and it's great. Sensible and measured insights which provide a back-bone of confidence for when I see the professionals.

One thing I've found is that this is a personal disease. How it interacts with you is unique. Like comparing people's driving abilities - most of us can and do drive, but we all have our own ways of going about it. So does this disease. So if you read of one person's experience and it doesn't match yours - that's the way it rolls - and it's still Ra. Wretched thing!

Welcome

[Mayna_Dichiara]

Thanks so much for all of the comments. Part of my worst pain started last December when I thought I had pulled a tendon in my left groin. After numerous shots, mri's etc. there is nothing wrong with my tendon. I read where it can affect the soft tissue - this is my worse - I can't hardly walk or lift my left leg into the car. Anyone else experience anything like this. Ha Ha not so young - Turned 60 in Feb.

Thanks again.

[Jay-bird]

So glad to hear that I am not alone with my soft-tissue pain. I was beginning to wonder if I had some other horrid disease in addition to my RA! J-B