recently diagnosed with RA. I'm 24. Is my life over?

peridotlouise

I have been diagnosed, and starting on sulfasalazine, which i'm so worried about. My rheumy says im at the earliest stage possible. I got diagnosed straight away within 3 months, at the moment have stiffness and some swelling in hands and thats it. occasionally my feet ache but i'm not in pain. It all started because i woke up one day and couldn't move my little finger so went to doctors, and they got me tested straight away.

When i read about people with RA, they are in pain... real pain, and everything i read on the net, people aren't doing well. do people do well?
am i going to get worse and worse??

I want to have a career...my ambition is to be a filmmaker, and im worried that one day i wake up and i cant move.

I don't know ANYONE with this. I feel very alone. I don't know what to expect, i'm worried the medication is going to make me sick.. and that my life is going to stop and it'll just be me coping with this. Do people do well?? Sorry.... don't want to sound annoying.
I'm just very confused, upset and angry

prefabkid47

Glad you found the LWA.I did respond to your post on the 'Say Hello' forum.
Ron

DebraKelly

Welcome.

Firstly, I can assure you, you are not alone!

I got diagnosed with RA 2 years ago and I am still living a normal life. Albeit, there are certain things that I can't do anymore, but you adapt.

I am on Methatrexate have been for 2 years, but I am shortly going to get moved to Sulfasalazine.

Don't worry about the meds, it will take a while for them to get into your system, but once they start working it will be worth it. The only side effect that I have suffered with the Meth is sometimes feeling a bit yucky and having an upset tummy. But it does pass and never lasts very long.

Try and read up as much information on RA that you can. If you even find one thing that will help you then its worth it.

Try and accept and adapt to your condition rather than worrying about it. Things will work out for you I am sure.

bertyboy

hello and welcome you are in the right place to get support and questions answered , i dont think your life is over it maybe just going to be a bit different , i have oa and dont know much about the ra aspect of Arther , there are plenty of folks on here that do and know more about the meds , i do think getting a diagnosis early can only be a bonus [not that i am pleased youve got it ] it helps if you have a good dr , it must all be alot to take in but please dont think you are alone x

stickywicket

Hello there, peridotlouise and welcome from me too. First of all, you don’t sound at all annoying – bewildered, scared, anxious, yes, but annoying, no.

It won’t seem like it right now but you are lucky to have been diagnosed so quickly and put on sulphasalzine. Everyone is scared of DMARDS (Disease Modifying Anti-Rheumatic Drugs) at first. As another recent poster wrote – it seems like taking a sledgehammer to crack a nut. Believe me, it’s best to knock this thing on the head asap. Yes, you will hear of bad reactions to DMARDS but those of us who have no bad reaction just get on with our lives and don’t need to mention them because they’re not a problem.

Your life will not stop just because you have RA. It will probably slow down from time to time and I’d be lying if I said there won’t be pain. There will. You will get used to it. There are meds which can take the worst of it away but it will usually be lurking in the background.

The rest is up to you. We have people on the forum who do amazingly physical stuff. (They’re not often around because they’re off doing their amazingly physical stuff!) I was diagnosed at 15 and now, at 65, I still enjoy myself to the full.

Take your time to get used to all this. It must have come like a bolt out of the blue. Why not ring the AC Helpline Team (Number at the top of the page)? It can help to just talk stuff over with people who understand. And don’t forget we’re always here. There are some great people on this forum and, between us we have a fair bit of experience and knowledge. I hope the sulph works for you with no side effects. Please let us know how you get on.

scattered

Hi peridotLouise,

I'm 24 and was diagnosed with RA when I was 19. I just want to reassure you that it's not the end of your life. Things may change a bit but you learn to adapt. It sounds like you've caught your RA at the earliest stage and, providing you take the meds, you can hopefully keep it there. The way you are feeling about your diagnosis is very normal and completely understandable.

People do do well with RA. I think one reason you keep reading about people in pain is because the people who do well stop needing the support of places like this and don't post as often. Personally I have had periods of drug-induced remission and periods where my disease has been very active. I have severe RA. I have completed on degree and am halfway through a second one with evry intention of getting a job at the end of it. I've had to adapt some things to make them easier for me to do, but I see no reason why you can't continue with you plan of becoming a film maker.

I've been on sulphasalazine. Some people report that it can give you headaches so make sure you drink plenty of water. The only side effect I had was it turned my pee bright orange. I always took mine with food which might help.

Ask all the questions you need to.

Scat.

Starburst

Welcome peridotlouise, I'm glad you found us. Sorry to hear you've been diagnosed, although it is positive it's been discovered early on and treatments are improving all the time.

I'm 23 and was diagnosed in 2009. Since then, I've gone to college, got a new job and started university. Your life definitley is not over but it will be different, although this doesn't mean bad! You do find ways to cope - emotionally and physically - and it takes time. I went through (and continue to go through) a range of emotions; anger, denial, depression and moments of acceptance. It's normal and it's ok to be wondering what your life will be like.

Sometimes visiting this forum, you wonder if and how people get on with their lives. Remember that those who are coping well won't post on a support forum because they'll be busy getting on with their lives. There are those who go into remission and there are those with milder courses of the disease but they are unlikely to be lurking around these parts.

Hope you find this place a useful source of support. We all know what you're going through and will always offer a friendly ear.

Sophie x

peridotlouise

thankyou everyone for your replies
it is hard to accept... but i'm really glad i found this forum. hope you're all well. i'll probably be posting more on here x

valval

as others have said it great they have caught it the meds help stop damage so give them a go as you will find out the rhummys take good care to look out for us so any problems are caught early and they will try another med. so you will go through a whole host of feelings but it is normal so is feeling exhausted but does get better when meds kick in good luck val

dreamdaisy

The best news for you is they have caught it early. The people you have been reading about may well have had RA for more years than you have been alive, may not have been put on medication as swiftly as you and yes, one can be severely affected by it as it develops but the meds are designed to slow that progress, reduce the pain, minimise the joint damage. Go ahead with the plans for your career, learn to listen to your body so that you can learn the signs of overdoing things (rest is the greatest help around) and come and talk to us about stuff: we've been there, done that, have a collection of Tshirts that would amaze you - but we're all living with arthritis. I wish you well. DD

wannabewriter

Hi peridotlouise,

Welcome to the forum!

You are most lucky to have been diagnosed so quickly

And don't worry: I don't have RA myself (OA and fibro for me), but I do know someone who was the same age as you at diagnosis a couple of years ago, and she had a really, really rough time to start with. Now, she's in full remission (whoop!) and leading a normal life. While everyone reacts differently to drugs etc, and remission may not be achieved by everyone, it IS possible and being diagnosed so early gives you better chances yet.

Best of luck, and remember the forumites are here to support and help you on your journey

WW
xx

frogmorton

Hi There

sorry l am late getting on, but would just like to say that there IS life after diagnosis definitely

Slightly different, but once treatment is sorted and you have your head around it all. Definitely life and not a bad one at that x;)

Love

Toni xx

tiggernut

Hi,

No your life isn't over just different!
I was diagnosed at 15 I had frozen shoulder and was scared stiff.
However I was given some tablets the shoulder came back to life and I had no problems until I was 18 when I was having bad headaches and I got told I had it in my jaw, I was given a thing to wear over my teeth which being 18 I wasn't keen on so I didn't. Anyway I never had any problems and lived with the headaches.(which have since been diagnosed as migraine) I had no other problems until after I had my 2nd son when I was 30. I won't bore you with my medical history but would say I am now 57 and have brought up two children and also worked for 10 years as a parcel courier. I'm not going to tell you you won't have bad days but you will also have good days and you may have to adapt, you may also have remissions when you will feel perfectly normal. So my advice don't be down hearted and live every day as it comes.
Good luck and best wishes,
Anita x

jenzie06

Oh love don't worry.

I was 15 when I was diagnosed with RA and Fibro. I'm now 28 married with a gorgeous 19 mo boy.

If you want to be a film maker, you be a film maker. As long as you are determined then you can do anything. Sometimes you will do things differently from 'normal' people in order to achieve but the end goal is the main thing.

Don't panic about the side effects of the drugs. I've tried lots of the meds and had many different side effects, some worse than others. Unfortunately it is the nature of the beast. It is good to be aware of the side effects but don't scare yourself or dwell on them.

I would say that whatever you do, make sure you have all the support you need as it makes life easier. If you are studying then there is support available at your uni/college. Or support with work or with life in general, through the hospital or benefits system (DLA).

Whenever I am feeling down and thinking 'why me?' I remind myself that everyone has a cross to bear be it emotional, physical or mental. Some things seem less problematic than others but they are all very important to the person effected. I also strongly believe that you are not given something that you can't deal with (although it may not always seem like it).

Above all laugh - a lot. My husband makes me laugh by shouting 'its a miracle!' when I stand up out of my wheelchair in the shops (don't be scared by the thought of a wheelchair, the fibro makes me v tired and using it when having to shop or walk a long way means I can save my energies for later in the day!)

I hope that you find a drug that works for you, there are plenty out there so don't despair and new ones are coming on the market all the time.
Don't give up and keep your chin up.

P.s this forum is brill for support too.

Mat48

Hi - sorry late on this but suggest that you take a look at the work of artist Tacita Dean - currently showing in the Turbine Hall at Tate Modern. She started with RA at about your age, when she was still at the Slade, and has been shortlisted for the Turner Prize and has won many other big awards and her main form of making is film. I'm sure it has had a big impact on her life but it certainly hasn't stopped her from being one of Britain's most successful artists! Hope this cheers you up. Take care and Merry Christmas from another recently diagnosed RAer artist. Mat x

cakegirl

peridotlouise wrote:

I have been diagnosed, and starting on sulfasalazine, which i'm so worried about. My rheumy says im at the earliest stage possible. I got diagnosed straight away within 3 months, at the moment have stiffness and some swelling in hands and thats it. occasionally my feet ache but i'm not in pain. It all started because i woke up one day and couldn't move my little finger so went to doctors, and they got me tested straight away.

When i read about people with RA, they are in pain... real pain, and everything i read on the net, people aren't doing well. do people do well?
am i going to get worse and worse??

I want to have a career...my ambition is to be a filmmaker, and im worried that one day i wake up and i cant move.

Hi lovely,

I was 24 when diagnosed, 37 now. Just wanted to say that your life is most definatley not over, you just learn to do things differently and sometimes at a slower pace than others. I can honestly say I have still achieved all the things in life I wanted to, no regrets.

You take care honey, it takes a bit of time getting used to things and there's always going to be up and down days. xxxx
I don't know ANYONE with this. I feel very alone. I don't know what to expect, i'm worried the medication is going to make me sick.. and that my life is going to stop and it'll just be me coping with this. Do people do well?? Sorry.... don't want to sound annoying.
I'm just very confused, upset and angry

Colin1

As you can see your not alone It all depends on your Rheumy and your condition . being caught early is a good sign but for some like me have suffered not that i'm complaining. However i am now on a drug Called rituximab and i have gone from the wheelchair back to walking. There is always new drugs coming out and you have your age and the early diagnosis no love your lifes not over but you must keep going and try to help yourself. Sounds like you have a good Husband from your otherpost and you have taken on a new venture. Go for it Girl youll be fine
Colin

traluvie

Sorry i am late posting, not been about much..
Just wanted to reassure you that your life isn't necessarily over..
With the right treatment some people can lead fairly normal lives with a few adjustments..It is very early to say how things will be, so best advice is to take each day as it comes and try and remain positive..xx

suncatcher

Do not ever give up life is different but not over. keep setting goals. There is always a way you will start to think out of the box and adapt i promise keep going keep trying from joanne