Just been diagnosed with Rheumatoid Arthritis

[Traceyanne]

I was diagnosed yesterday and am finding it hard to come to grips with this fact and the pain. I'm trying to be positive and am putting up a brave front when with other people. But when on my own I'm finding it hard and feeling very tearful. Is this normal?

[elrose]

Ofc its normal. You have been in a lot of pain and whilst there is the positive of having a diagnosis it must seem a little scary. Know that you are among friends who have been where you are and will be and in my experience have always been willing to share info, encouragement and ocassionally simply an ear....welcome - Linda xx

[Traceyanne]

Thanks Linda. Yesterday it was a lot of information to take in and I think I'm just coming to grips with the enormity. Also in a lot of pain which doesn't help.

Tracey xx

[Trish53]

Absolutely normal in my experience Traceyanne! It has taken me nearly a year after diagnosis to come to terms with the condition, especially after being considered fit and healthy all my life. Tears were part of my everyday life for most of the last year especially where I least wanted them to be - at work in front of my managers and colleagues, with family, at the doctors and Rheumy clinic! But believe me when I say it does get better and you adjust to a new 'normal' eventually, although good and bad days are included in this. Be kind to yourself and relax as much as possible - nightly warm baths are my treat (with smellies and soothing body lotions) and ease the pain too, helping me to sleep better. If you work, then consider reducing your hours if you can afford to (I am intending to go part time in the next few months). Just reading the blogs on this site helps me to feel better, as I don't feel so alone.

Trish x

[Hidden]

Yes it's completely normal. I was diagnosed in November and am always suffering from bouts of horrible sadness and depression these days having been an upbeat person always - and then I climb back out of the gloom and things are okay again for a while but I still seem to think about it every minute of every day. As Trish says there is a new normal - and it hasn't yet become my normal f but I hope it will soon. You will feel shattered just now and it's a lonely business unless you have a family member or a friend with RA or something equivalent - so that's why it's so good to come here often where you will never be alone. Tilda xx

[Gina_K]

Welcome Tracey Ann,

I remember when I first got the diagnosis, I did'nt take it very seriously, I dont think I believed it, but really I did'nt understand. As time went on, and I did'nt get cured, I got tearful and worried, eventually I accepted it and since then have been fine. I am pretty well now 'all things considered', it does take a while, to accept it is true, and especially the fact that most people think you jst have a touch of 'arthritis'. I remember one co worker saying to me when I dragged myself back to work 'How did your bones get like that?' F.. ...!

The ignorance & lack of understanding that it is an 'AUTOIMMUNE' disease, and not something you have done wrong is hard to take. I got so sick & tired of saying it is an autoimmune condition I have just given up trying to explain. Those that are true friends and that love me understand the others were never friends anyway, I just did'nt realise that.

You will get back to a certain normality don't worry, I am sure of that. Stay on here, and ask any questions, no matter how silly they seem. I wish I had had this site 4 years ago, when I was at my worst, and every joint was on fire, and it was nearly a joke which joint would hurt next. That never happens now, as my RA is controlled. I knew no one who had RA, except some elderly Aunts. I know a few now.

Remember, knowledge is strength, so research and get as much support as you can. Try not to expect everyone to understand. You will be surprised at your own inner resources. The grief you feel now is completely normal, its the loss of where you thought you were going and who you thought you were, but this is just perception. You are still the same person, you just have a condition now, which is not life threatening and is treatable. Look on it as an opportunity to re evaluate. Its amazing when you are forced to slow down, how much you notice and see.

The very best of wishes to you, you are definitely not alone.

Gina.

[shoebox]

Hi Tracey. I was diagnosed a year ago, I was devastated and the tears flowed. Like the other advice given, I sourced as much information about my condition and the medication prescribed. Although this will be a blow to you right now, you will find that knowledge and understanding of RA will help you to manage your days. Unfortunately ignorance is a problem when others do not understand what you are feeling both physically and mentally, it's human nature, if they can't see it then it can't be real - that's the perception I have encountered. You will in time accept your RA and make good of taking care of yourself. Lots and lots of people here to take advice from too, which I think is a valuable bonus .

[elsa123]

Hi Traceyanne,

It's 2 weeks ago today since my diagnosis.

I have been all over the place with this.

My biggest hurdle has been denial , as I am feeling so much better than I was 3 months ago.

I cried more before I got the diagnosis because I was feeling physically worse and for the first time in my life I was seriously worried about what was happening to me.

This forum has been so helpful to me already.

Whenever I have another fear, I come on here and ask away.

The support really helps.

It's on my mind all the time, no matter what I'm doing.

Suppose it's the mind's way of coming to terms with things.

Keep posting on here, talk to the people you know will be supportive and don't worry about others.

This is a time to seek out the people who can help you, and avoid the ones who won't.

I told my aunty and she said " I get a bit of rheumatism". I tried to explain a bit, then thought "What the hell, it doesn't matter to me whether she get it or not".

[Judi]

Hi Traceyanne, sorry you have been diagnosed with RA, it comes as a shock to all of us when we get that diagnosis.

When I was diagnosed (18+ years ago) my late Mum had it so I expected the worst and felt absolutely terrified of what my future would hold. What I didn't realise (there was no google then) was that everyone is different in how RA affects them and what medications work for one and not another. My Mum's medication and mine to a degree did not tackle RA as aggressively as the early treatment now. I was an 'only take tablets on rare occassions' person before RA -but I decided when diagnosed that my only way forward was to try whatever was offered to me by my rheumy consultant.

You will get loads of advice and answers to your questions on here,

My best advice to you would be: don't suffer pain in silence. If you are in pain, speak to your GP or rheumy team and try and get it sorted. All the time you are in pain it's going to bring you down and make you feel more depressed. There are lots of pain meds. out there and meds. which slow down or put RA in remission it's just a case of what's going to be good for you.

Try and keep notes on what meds you try as somewhere down the line they will ask you if you have tried 'XYZ'.

Make notes of how you are feeling and any questions you want to ask when you see your rheumy consultant and make sure you get answers to your questions - they are used to getting the 3rd degree (also get hold of a contact telephone number for your rheumy nurse which can be helpful if you dont understand something).

My thoughts are with you at such a depressing time.

Judi

[Hidden]

Hello welcome Tracey,

Yes it a horrible shock and until the medication is sorted the pain is very bad, things will get sorted and you will start to feel better, Nras are very good for fact sheets and advice, all of us on here have been were you are now, your feeling the same as we all did when first diagnosed. It took me some time to come to terms with RA and that is true for a lot of people, this site offers a lot of help and support xx

[Hidden]

Hi Tracey, so sorry to hear you have been diagnosed with ra, for me it was a relief to finally be taken seriously but after a few weeks that relief surely turned to fear, shock and i cried at the unfairness and the pain. And from being on here it does appear that this is a very common reaction.

Get as much support as you can and try not to hide your pain and do too much.

I was diagnosed a year ago and the tears have now gone, i don't think too much about being an RA victim but i still struggle to accept the whole thing. I find it very difficult to not do something i would have normally done, due to ra because i still think of it as a fight which is very stupid.

I really do feel for you and i hope you have a good rheumatology team looking after you.

[Jan66]

Hi, so sorry you have this.

Make the doctors and nurses your best friends, even the consultant rheumy and his secretary. Don't be afraid to ask any questions, even if it seems silly to you and have someone with you at each appointment.

Don't beat yourself up, say no if you are too poorly to do things.

I was in denial for a year and did myself no favours, rebelled at taking all the pills - wrong!!!!!!

Listen to your body, rest and sleep will be much needed.

Things will improve and humour may even kick in!!!!

This forum means you are not alone.

Take extra good care of yourself,

Remember it is an auto immune disease and this is what I tell people - leaving out the word 'arthritis' which confuses the issue I think.

Jan

[Traceyanne]

Many thanks to everyone who replied to my post. I'm so glad I've found this site and think I will be using it regularly. Although my friends have tried to be sympathetic, I think they find it hard to understand as it's not something they can see. If you broke your leg it would be in plaster and people could relate to that. Like some of you I've also come across ignorance, such as a colleague saying Arthritis isn't that bad.... If only eh...

I'm going to try and take one day at a time. Like yourselves I've felt cheated, angry and frightened. However, the Rheumy team working with me were very positive and very kind.

Once again many thanks, it's a great comfort to be able to talk to people who understand what I'm going through.

Traceyanne xxx

[Parky312]

Hiya

I was diagnosed 4 years ago and still struggle sometimes with coming to terms with RA.

I have found it's the ignorance of other people which really get me down. they have no idea what it's like. Because they can't see any physical evidence apart from swelling they haven't a clue what you're going through. And they choose not to listen, giving the impression it's all in the mind.

I am now on anti depressants to help, but the main advice is to take it a day at a time. Adjust your life if you can. If you're tired then rest. Don't over do things and certainly Don't feel guilty if jobs don't get done. you are more important!

Look after yourself. There are lots of people out there who understand and they are usually on this website or the NRAS website.

Sending you a big cyber hug

Karen x

[Lee_66]

This is very normal, I was exactly the same 18 months ago when i got diagnosed, I have days when it wears me down but I try to stay as upbeat as possible which when you live on your own isnt always easy. We're all here for you.

Lee

[lynn-bel]

Ah, Traceyanne: It is very normal to cry, get angry, swear and shout (as I did). When I was waiting for the results I kept saying to myself please dont let it be rheumatoid arthritis over and over again. But it was and I was a bit shocked for quite a while. But you realise very soon that there are medicines and all sorts to help you and to stop the disease from worsening. Its early days for you yet but you must remember to stay positive, concentrate on what you CAN do and not what you can't, keep as active as you can as this really does help. If you get prescribed something that doesnt agree with you, dont accept it without asking questions. Write lists of concerns, questions, etc. before you see your consultant or GP and make sure they address your concerns. It's very easy to let them rush you along making you feel as if your time's up, but just sick to your guns and get all the answers you need.

Family and friends need to know how you feel and so if you can, give them information about the disease so they understand it, as many people think its just achey joints! I understand putting on a brave front, but those around you do need to know what you have to contend with as you will need their support in the future. I'm lucky with my hubby and close friends, they do understand and don't smother me but provide great support.

You will be fine; right now you need to cry as much as you want, let whatever emotion you have come through, a bit like grieving, get it out of your system. Then decide that this will not rule you, YOU will rule IT.

This website will help, so stay in touch and all the best to you.

Lynn xx

[Traceyanne in reply to lynn-bel]

Hi Lynn-Bel

Thanks for your reply. It is hard and luckily most of my friends try to understand and caring. However, last September I was on holiday and mentioned my RA (in my job I was relocated to a much further distance, which impacted on RA when driving it was very stressful and also had to re-apply for the job) so the RA played up big time. This friend rowed with me saying that I should stop talking about my RA . It really made me think and worry that I was burdening friends. However, other friends say I don't say a lot so I think this person was just being unkind.

Hope all is well with you and you are getting some pain relief.

Tracey x

[TerriL]

Tracyanne,

What you are feeling is completely normal. Cry, scream, do whatever it is you need to do to release the feelings. Do not hold your feelings in.

This is a wonderful site where you will find information, compassion and understanding from people who have RA.

As well as this site there is another you might want to check out rawarrior.com.

Gentle Hugs being sent your way.

[Traceyanne in reply to TerriL]

Thanks Terril

I hope all is well with you. This site is marvellous and I will look at the other site.

x

[Kathy31jan]

Hi Tracyanne. Sorry to hear your news. I was diagnosed 15 years ago. It was triggered by a pregnancy which went wrong and had to be terminated so my emotions were all over the place.

I completely agree with everyone here that you mustn't put up with pain because there will be medication that will help suppress the disease activity and you mustn't allow your joints to be damaged as pain usually = damage.

I struggled to accept at first that I'd got something that couldn't be fixed as we're all used to going to the GP and coming away with a prescription to fix whatever it is. But you will come out the other side and get on with life when you get your head around it. I think the more positive you can be the quicker that will be.

I have an aggressive form of RA , but have brought my daughter up alone for the past 10 years and have a full time job so it doesn't need to bring you down. What has worked for me is keeping a positive attitude, asking for help from my rheumatologist if I am in pain, taking my tables morning and evening and then ignoring it! . If I feel low, which is hardly ever now, I remind myself that there are alot of people with much worse conditions than me. In fact my friend's daughter was diagnosed with juvenile arthritis age 6 so I do consider myself lucky. I think it's given me a much better understanding of pain and more sympathetic with other people's medical struggles and weirdly made me a better person for that.

It's totally Ok to 'mourn' the body you used to have. I'm still in mourning for the fact that I used to do aerobics 3 times a week!. Being positive about the things you can do rather than dwelling on what you can't will be difficult at the moment but when you can you will feel more optimistic. One day soon, what you're feeling now will help you to help other people. K xxx

[Traceyanne in reply to Kathy31jan]

Many thanks everyone. Kathy you have gone through so much. But you have given me hope, cos I have been worried about if I can go back to work as I need to as I'm on my own.

I'm so glad I've found this site. The support and response from people is amazing.

Thank you.

Traceyanne xxx

[robert45]

Hello Tracyanne

Its not easy at first but everyone here knows what you mean this is one of the best places to ask questions any questions we are all here to help each other,

you are not alone and have not been singled out.I have had ra for about 8 years and since i found this group life is a bit easier good luck and keep smiling.

[surreymum]

Hello!

Firstly my thoughts are with you after your diagnoses.

Secondly, I think all the emotions you are feeling are completely natural - I feel exactly the same way having been diagnosed at the end of February. I am trying to stay positive, and trying to think that I will not let ra beat me, but find it hard when everyone is just getting on with their lives. I want to scream at them all which really sounds so silly!!

Sending hugs your way.

[Jetblack]

Hi,

I was diagnosed four months ago, and I have been through a rollercoaster of emotions with it since then. it is a lot to take in, the diagnosis, x rays, blood tests and the meds. I found this site, and eveyone here is really supportive, you do not feel alone, and the NRAS helpline was amazing, epescially the newly diagnosed booklet they send you, you talk to someone on the helpline and on here, who are going thought it and give you lots of sounds adivce. Aks all the questins you need to, my rhumy slid a booklet about RA accross the desk, gave me a steroid injection, and for a month floundered with nothing. Hnag in there, and take it easy, it will take some time to get your head around it all. Lots of luck Paula x

[Nikk]

Hi Traceyanne,

I've been a lurker on this site for a while and was diagnosed with RA just over a month ago. Like many others I was almost relieved at my diagnosis as by that time (a year after symptoms started) I was in a lot of pain doing everyday activities, and as family and friends can't "see" the disease I'm sure some thought I was making the constant pain up!

I completely understand your comments - Everyone (even the most healthy person) has good days and bad days, sometimes you want to curl up in a ball and cry or shout and scream. I think that for those with RA the worse thing is the fact that the disease affects people in such a myriad of ways and some will respond well to treatment wheras others do not so we really don't know what to expect making it tougher to deal with, both physically and mentally,

I'm beginning to come to terms with having RA but I think it's going to be a long struggle to accept having it fully. I'm 33, otherwise fit and healthy with 3 children, a job and a husband and I'm going to do my best to keep enjoying all those things and not let RA ruin things. I'm lucky enough to have been caught in relatively early stages and my rhumy is fab- helpful, thorough and best of all positive about my treatment.

I recently bought a puppy to force me outside for a walk everyday - and find that distraction whilst it doesn't take away the pain, does give me something else to think about- I had two lovely half hour walks in the rain yesterday and felt brilliant afterwards- still in pain but a lot better than I would have otherwise.

Look after yourself and if you need support there are many people here in the same boat who are happy to help Xxx

[Ladybird47]

Hi Traceyanne

I just want to confirm what all these great people have said on this blog. I was diagnosed 10 yrs ago and found it hard to accept at first, but you do learn to live with it. I have only recently come on to this great site, just venting sometimes how you feel on a particular day helps release the stress of bad times. As it has been mentioned people who are not aware of what RA means, can appear uncaring and quite frankly there are days when you can,t be bothered to explain. Hang in there Hun your life will adjust i try and think positive and think it could be something that i couldn't be treated for. take care (( Traceyanne)) Ladybird x

[allanah]

Hi Traceyanne,

Glad you have joined the blog. I feel these people are my friends and really do know what i am going through. Thinking of you lots. Do read all the nras stuff and rest when you can, dont rush around and my motto"pace yourself" Cyber hugs Axx

[masymae]

Hi, I have just been diagnosed with RA which was a real shock. Although I have been feeling ill and in a lot of pain for a while, I never thought of anything like this. My family don't understand how I am feeling and the pain I feel. They think I am putting it on, but I do feel dreadful and tearful and scared of what to come and the medicine I will have to take. Is this normal.

[nattynooo]

Hello all i was diagnosed last Tuesday and to be honest i am bit lost at sea. I have no idea what to expect moving forward !can all you ladies who were diagnosed a long time ago help with this. Once your medication was sorted did the pain go away or is this it forever. It's weird i have had a really swollen painful knee for two weeks and last night i went to bed and the swelling was gone by morning, such a relief. The pain was still there but the tightness had gone and i was excited about a little less pain. Crazy. i think i my be in a bit of denial. i keep telling my self maybe their wrong. i am fit and healthy i over snowboarding and am frightened that my life is going to change so much. sorry for rambling i don't know anyone else with it.

thank you for reading

Natalie

[Monicaranson100]

I was diagnosed of RA in 2009. I was put on Naprosyn and after some time i didn't feel any different, so i started on a Natural Rheumatoid Arthritis Formula treatment protocol from RICH HERBS FOUNDATION (ww w. richherbsfoundation. c om), the treatment made a great difference for me, it effectively treated my Rheumatoid Arthritis and symptoms. The swellings, stiffness, fatigue and joint/muscle/body pains has subsided, I feel better overall than i have felt in years.