RA diagnosed today - have cried all day, am scared...

pols090607

hi all,

well my story is that for the last 10 years i have had arthritis in my wrists, fingers,shoulders, knees and ankles. seen consultant every 4-6 months, had the usual bloods, xrays etc and have coped with NSAID's, codeine and intramuscular steroid injections. rheumy has always diagnosed as palandromic arthritis...

today i went back in for another steroid injection as the last few months things just seem to be getting worse, i am finding it much harder to cope, aching more and so stiff in the mornings i'm finding it so hard to get up and the rheumy has today said that my last x-rays indicate RA and so do the bloods (although still no rheumatoid factor).

i am to start on metho next week but i just feel so scared, overwhelmed, worried and sad how my life will be affected. i have two young children and i worry for them how my illness will affect them. i know i have had this illness for 10 years and i should not be so shocked but i just am it feels so final.

my question to everyone is how can i remain positive with it all, i really want to be brave and stop all this crying....

sorry for long message, just having a really difficult time today and would like to hear other people's experiences of when they were first diagnosed and stuff....

thanks everyone xxxxx

Wonkylegs

pols090607 wrote:

hi all,

well my story is that for the last 10 years i have had arthritis in my wrists, fingers,shoulders, knees and ankles. seen consultant every 4-6 months, had the usual bloods, xrays etc and have coped with NSAID's, codeine and intramuscular steroid injections. rheumy has always diagnosed as palandromic arthritis...

today i went back in for another steroid injection as the last few months things just seem to be getting worse, i am finding it much harder to cope, aching more and so stiff in the mornings i'm finding it so hard to get up and the rheumy has today said that my last x-rays indicate RA and so do the bloods (although still no rheumatoid factor).

i am to start on metho next week but i just feel so scared, overwhelmed, worried and sad how my life will be affected. i have two young children and i worry for them how my illness will affect them. i know i have had this illness for 10 years and i should not be so shocked but i just am it feels so final.

my question to everyone is how can i remain positive with it all, i really want to be brave and stop all this crying....

sorry for long message, just having a really difficult time today and would like to hear other people's experiences of when they were first diagnosed and stuff....

thanks everyone xxxxx

Hi Pols & great big hugs (((((((()))))))))

we all have had days like you describe .... when it all seems too much to cope with.

But I tend to think of my label of RA as more of a badge to entitle me to treatment rather than a bad thing these days. I didn't always feel that way though

I take MTX and it has really helped me and a lot of others. I really hope that it can slow your disease too.

Perhaps you could talk to your GP or your practice nurse about how you are feeling? They might be able to offer you some extra support.

also, the Arthritis Care helpline will be open again in the morning, and they have LOADS of experience of helping people just like you. They are really great at talking things through (number at the top right hand corner of this page)

and just be kind to yourself for a while .... you haven't changed overnight ... you are still you .... and your children will love you just the same.

loads of hugs
Wonky xxx

woodbon

Hi, I'm so sorry to hear that you feel so upset. You are suffering from shock at having a regular visit compleatly changed and given news you never expected, which will take a while to sink in.

You need someone to talk to, your GP would be a good start, especially if you get on with him. I'm sure the hospital will give you some support from a special rheummy nurse and that may help.

At least now, with the diagnosis and correct treatment you may well find that you start to feel better soon and also the modern drugs are so much more effective than the old ones, so people like you caught early, stand a good chance of living a good life without too much pain and disablement. It must feel awful now and thats normal but, it will get better, I'm sure.

Love Suexx

valval

hi the shock must have been awfull any one would have felt there legs had been kicked from under them lol sending you hugs and positive thoughts good luck val

caprica

Really sorry to hear about your news.

Don't worry about crying - it helps to get it all out, I cried all the time when I got diagnosed. Eventually the shock will wear off.

The good news is that you're already under the care of a rheumatologist and you are starting treatment. Try to stay positive, no one knows what the future may hold. You might find that the medication really helps you and you might feel better than you have in years!! There's loads that can be done, you have every reason to believe you'll be perfectly capable of looking after your children for a long time yet.

Keep us posted on your progress!

tillytop

So very sorry you have had such a horrible day today and have received such unexpected and shocking news.
I understand that it’s so hard for you to see anything positive about the situation at the moment because you are so upset but I wonder if this RA diagnosis may be the turning point for you.
What I mean is that, instead of having to struggle on, as you have done for the past 10 years, with only limited meds to help you get by, you now have other drug options open to you which could really help to make your life easier. If you start the metho next week you could find that, with a few months, your arthritis is under much better control. I know that metho doesn’t work for everyone but, if, for some reason, it turns out not to be the right drug for you there are plenty of others out there.
Please, please know that you are not on your own with this. Being desperately upset as you are is a perfectly natural reaction and staying positive is something we all struggle with. So please do keep posting and we will do our best to support you through this difficult time.
As Wonky suggests, please do think about putting a call in to the helpline in the morning if you feel you can. And I don’t know if your hospital has a rheumatology nurse who you could talk to?
Thinking of you.
Love Tilly x

dorcas

Hi pols ...of course you're upset and in shock...but

think
...you have been coping with the unpredictable palandromic arther for 10 yrs... and that is not easy to cope with.

...your family have supported you over this time and I'm sure will continue to support you.!

...your docs have responded and treated you when you needed them during these last ten years...and are looking out for your best interests now.

yes...you have now been given a new diagnosis ...which has come completely out of the blue...and it will take time to think this through and adjust to having RA and a different treatment regime.

but...as others have said...you are still you.... and nothing has been taken away. your life is still the same.
but you will have to learn more about your condition; so spend time reading up on RA and the drugs your consultant is considering. speak to your family (they will be worried about you) your doc...the helpline..and us!!!!!!! ask questions.

we are here for you and have had similar experiences of coming to terms with our long term arthers so know what you are going through. you will get there.....x

love n hugs,

Iris x

pols090607

thank you all so much for all the replies, i am actually now sitting here crying (again) but in a positive way as they have made me feel much better and positive infact i am going to print them off and pop them in my handbag for when i'm having a wobble !

i agree that perhaps this will be best now that i can get onto proper medication and perhaps the inflammation may calm down with the metho over time. i have coped with it for 10 yrs and that's struggling with prams, carseats and lackof sleep so i have to think that things can only get better hey, my youngest has just turned 2 so during the next year she will get a bit more independant which will hopefully may make things a bit easier.

the comment that i'm still 'me' helped me to put things in perspective. YES, i am still me. i need to remember this, nothing has changed, i don't feel any better or worse than i did yesterday and i was coping/happy then.

i've just had a nice bath with a mag and am going to try and get a decent nights sleep.

thanks so much for the support, it really helps to know that you're not alone.

thanks you xxxxxx

ironic

Hi Pols,

I cried and howled at the moon when I was first diagnosed. It's normal to feel the way you do. I know you can get in front of yourself with this. I did not know anyone who had RA so I got myself into a right state.
Palandromic was my first diagnosed but to be honest they are not really sure. I have responded to the milder meds. As others have said once you are on the new medication things will improve for you.
I have learned so much on this site, so do not feel that you are on your own.

Keep posting and I am sure given a little time things will not seem as bad.

In the mean time be kind to yourself.
Lv, Ix

pols090607

thank you for your kind words, i agree, i don't know what i would do without this site.

what meds are you on now xx

suncatcher

Im sorry you have had this diagnosis. I can understand your upset. You have got used to one dianosis now you have another. It would confuse me. All i can say is read all about ra when u feel up to it. Every things too much now.
I think if you have a good family who support you they will continue to do so. The children adjust to you. It is balancing everything rest is important. I have had an afternoon nap always as it is the time my son had is. He is a school now and i still have this rest same time. The meds will help you a lot. Everything takes time take things one day at a time. remember on here there is always someone to talk to pop on here. we are all here for you from joanne

ironic

pols090607 wrote:

thank you for your kind words, i agree, i don't know what i would do without this site.

what meds are you on now xx

Hydro and diclo. Been on them since August but having trouble with hand and foot swellings etc.
Just got a letter today to say my appt has been cancelled from early August to end of Nov. Seems a few people are having dates changed. Just hope it's not because more of us are getting RA and the clincs are getting full up.

Hope you manage to get some sleep tonight. You will come to terms with things. Promise Just give yourself time. Lv, Ix

dorcas

Glad you are feeling a bit brighter......and hope you have a restful night.

take care...

Iris xxxx

skezier

Hi Pols,

I am glad your feeling a bit better and the fact that you have coped so well for 10 years means you will cope with this as well. With luck he mtx will help with both and you will feel much better all round soon.

It is a shock cus well I used to think cus I had one sort I was protected from another sort.... turned out to be untrue but once you have got your head round it I think you will be fine again. Leaving you a ((( ))) and a bucket of hopes it all starts to ease up for you. Cris x

tkachev

Hi Pols,

You are not alone. I had a newborn son when first got R.A symptoms. When finally diagnosed it was a relief but I knew nothing about R.A so wasnt upset.Medication did help at first.I had some very bad times after my daughter was born.But everything is very well controlled now.It is a case of finding what helps your joints improve and it can be trial and error.
The hardest part is getting others to understand when you have bad days. As long as you have some support (partner and family)you will be okay and of course others on the AC forum will help too.


Elizabeth

lindalegs

Hi Pols,

So sorry about your diagnosis and you're bound to cry because, at the moment, it's the unknown.

I've had RA since I was 27, 24 years now, brought up two sons and been married for 31 years. I had a son of 2 years and a newborn when I was first diagnosed. Life can still be great even though you have RA and I believe I'm probably a more understanding person for having it.

You just have to learn different ways of doing things and live each day as normally as you can around your disease. Try not to let it rule your life and every little battle you win with it will become a major achievement.

Take care.

Luv Legs

annie_mial

I can only echo all the others! The 'crying days' tend to happen long after diagnosis, so don't be surprised when they arrive.

I agree with the others, this could be a turning point for you. Do hope you get some sleep tonight and feel more positive tomorrow.

Annie
xx

trisher

Hi

I hope that you feel a little better now you have spoken to people like uu who have RA.

I cannot really add any more than what everyone has said. It is a shock at first but you will get through it.

Sending you a big (((()))

love Trish xx

mummyb

Hi Pols, I think I know a little bit how you are feeling right now because I had my diagnosis of RA last Thursday. It was a relief to me to finally have a diagnosis and to know. at last, what I have to deal with. I have already started my treatment regime, too early to tell with the methotrexate, but I had a steroid jab in my bottom and within a couple of days I could feel a difference. Some swelling had gone down, pain much more manageable which feels like a miracle to me because only last week I was in a really bad way and feeling awful. My consultant told me that the steroid will "dampen things down" and thats exactly what has happened, symptoms have not gone away but are much more bearable for the time being. I'm trying to stay positive and initially I didn't know whether to feel happy at having the diagnosis or bad because of what it is. At least I know there are lots of treatments available and I'm looking forward to finding the right one for me. Good luck and hope you soon get over the shock, would be good to keep in touch and to be able to support one another. I find the support on here fantastic, don't know what I would have done without it over the past few months. Anyway, hugs and best wishes, (((()))) Brenda xx

speedalong

Hi Pols,

have just read all your posts ... what an adaptable and strong person you are, this is just a very understandable wobble. Hopefully the new slant on your diagnosis and the new meds will help you improve again - you say the last few months have been your worse - and get you back into able to manage mode. Your docs sound on the case and you will still just be Mum to the kids, whatever name your arther has.

Try and squeeze in a few more baths (ha ha!! I know that will be a challenge - you're a busy Mum ...) and a few more visits to the forum!

Take care
Speedy

carola

Hello Pols

Just saw your post just now.

Initially in March this year at 38yrs I was diagnosed with RA then rediagnosed with SLE (a form of Lupus) and PolyArthritis. I am now 39yrs.

Yes, I too howled and cried when received both diagnosis. One main thing I quickly learned was that friends and family have no idea the effect it has not only with daily tasks but in the head too. I have had to give up work, no social life, nae shopping etc. not to mention the pain every single day so I have made sure that the people that matter to me have an inkling of all this. This has helped me greatly. You are STILL YOU however I believe that we have to adject slightly who we are until we get our symptoms under control a little bit so we can live our lives almost as we want to. As with all things, our minds are the most powerful tool we have so please use positivity as much as possible and of course when you feel like a cry just plonk yourself down on the sofa and howl - let it all out. It is just like going through a grieving process and just think how proud of yourself you will be when you get through it.
I know that I will NEVER EVER give up getting back to my ol' glamorous self sooner rather than later!

Keep smiling, Carol

frogmorton

Hey Pols

You know, when you are told something like this you have to greive for what you had and what you expecetd from your future.

You may go through a range of emotions up one minute down the next.

For now I should just be kind to yourself and allow yourself time to get your head round it.

The best advice I can give you is to keep talking reading SENSIBLE stuff( not interweb scary stuff).

We will be here with you to support you and hopefully help you while you work through it all.

You will survive there iS life after diagnosis - maybe not the same, but a good one.

Oh and by the way upi have no doubt been living with this for a very long time and now you will be getting something to help you with it - i hope you will start to feel a bit better physically too.

Love and hugs

Toni xx

pols090607

thanks again for all the positive replies. i have today woke up just feeling slightly drained but i think that could just be down to all the crying yesterday. on a plus note, i have not cried once today.

i'm having an easy day, just pottering around doing some cleaning and washing but at a slow pace and I have just painted my nails and plucked my eyebrows (I am STILL me) whilst my little girl is having her nap !

up to now i have only chatted with you guys, my husband, mum and sister as i don't yet feel 'ready'to start talking and opening up to people, i feel i need to get my own head around it first and whilst i'm still very tearful i think this is going to be my best way of dealing with it for now.

thanks again for everything xxxxx

frogmorton

Glad you are a bit more 'yourself' today.

yes you are still 100% YOU!!!

I agree - no need to tell everyone and his wife just yet - you will know when you are ready.

Good idea to look after youreslf - can I nip round in a bit - my nails need doing too

Love

Toni xx

angel1

Accepting and learning to live with any life changing disease is going to play havoc with your emotions Pols. In the long run, however, this is the healthy way of dealing with everything. Face your emotions head on, and run with them. That "drained" feeling that you are experiencing today proves that you have started to do just that, and to fight back.

You need to give yourself time to accept what, in effect, is a form of bereavement. A loss of the old you. With the love and support of family, friends, and this Forum, you will accept, in time.

Remember too, that you have no need to share your illness with anyone unless you want to. However, with close family, especially hubby, communication is so very important. You may find they have difficulty in fully understanding, but that is to be expected initially. Sympathy comes easily. Empathy, however, is far harder.

Give yourself time, you will achieve what you need to, albeit slowly........Ange.

dachshund

Hi Pols.
i'm sorry you have been so upset.
try not to worry it makes you feel worse.
i cannot help you i have oa.
please remember to have pleny of sit downs when you feel tired think of your body and rest and try to think of happy things through out the day.
dont think i have all this to do to day put the radio on and sing along even if you have to sit down to wash up.
take care. joan xx