Your reaction to your diagnostic ?

[Mariechristine]

How did you react and feel the day you were «officially » diagnosed ? And the days that followed ? Did you do anything different ? How did you cope with the news?

[Hidden]

ooh, thats a big question? My OH was diagnosed when he had a major flare last Christmas, all joints swollen. i had been concerned for at least 6 months by then and he had made fruitless trips to the GP (unusual for him) so i guess a diagnosis was welcome so treatment could begin. He had reduced his hrs, never a smoker, keen hill walker, and has a healthy diet, so not much he could improve in lifestyle. He had two doses of steroid to reduce swelling and in now on long term medication. Back at work, but not yet back to hill walking.

My advice would be to really try not to get too far ahead. Don't google! I know some people who take one type of med that works for them and they are hardly affected at all. They don't post on this site because they don't need to.

All the very best.

[helixhelix]

I cried..... and then got really depressed and miserable thinking that my life as I knew it was over.....and then fretted hugely as we had just bought a house in the middle of nowhere that needed lots of work. And then started looking at wheelchairs and disability aids on line.

And then I picked myself up and gave myself a good talking to, stopped scaring myself stupid on Google, and listened to my rheumy and learnt more about the disease from reputable sources. And got on with it!

[Mariechristine in reply to helixhelix]

Are you ok now ?

How long ago were you diagnosed ?

[helixhelix in reply to Mariechristine]

Yes, 95% normal now. I was diagnosed 8 years ago, and in remission for 5 of those.

[Shalf]

I went into total shock! The Rheumatologist who broke the news was very cold and displayed zero compassion. He told me I have RA and then went on at a fast speed about the meds I was to take. He gave me no time to digest the news or to gather my emotions together. Just ushered out the door telling me he would write to my GP.

It wasn't the best but I have a new Rheumatologist now who is very approachable and understanding. I had some knowledge of RA but it was wheelchairs, acute pain, deformed hands that was in my head and that was tough to think about then feel. It's not like that though! Management for RA is very different to what it was 30 years or so ago. It's finding the suitable medication that's the difficult part. The rheumys say you have to give the meds prescribed time to work. When they don't it's frustrating as your back at square one! Well at least that's how I felt. My life has definitely changed. I was very fit and active and now the flare ups and pain of Fibromyalgia and RA has stopped me from hiking, playing tennis etc. I keep faith though! On biologics now and hope they control the inflammation and give me peace!

Best Wishes

Take Care

Suzie

[Hidden in reply to Shalf]

Sympathise Suzie: both mine and nurse bit cold: both assumed other had told me all about it, no info at all. Bunged a feweaflets and patient care booklet that neither have filled in over last year, just me. Nurse asked if steroids had stopped swelling otherwise it might be cancer and told me not to ring helpline for anything trivial, as someone else had annoyed her, kid you not! This was first 2 appointments. I ve found everything out for myself and gratef for this site & nras. Might be downsizing to different area and bonus would be moving HCP tbh. So felt numb basically; have asked to be copied in on all correspondence, have 1 diagnosis letter courtesy of my lovely GP not them! I know they must get compassion fatigue but it's a lot to cope with at first so social skills would do x

[Shalf in reply to Hidden]

Hi Kerena, Yes the initial news re my health was a bolt from the blue and left me feeling extremely vulnerable.

Like you, my GP was also really good but their time with patients is limited. Hard to talk about your feelings and answer all your questions re the diagnosis in 10 minutes! I received a letter from Rheumatology about a week after being told I had RA asking me to see the nurse who will inform me of medications to take and the awful side effects that potentially could occur! Hair loss etc! I had to pinch myself a few times, thought I was having a nightmare! A swollen forefinger and an achey pain in my shoulder led to all this. No I wasn't prepared for that at all. It's true what they say, ' No one knows what tomorrow will bring'

Sending love and healing to everyone suffering and trying to cope with this frustrating, painful and emotionally and physically draining disease. This forum is a fantastic support. The understanding goes a long way! Well done NRAS.

Suzie xx

[Hidden in reply to Shalf]

Know what you mean suzie, they have limited time n always looked stressed to me, some people on here have good ones, just unlucky i think. It is total shock to your system but a year nearly on I'm in better place physically n mentally; hope you are too and I'm one of lucky ones- my hair didn't fall out, so i should stop moaning now 😊

[Shalf in reply to Hidden]

Year and a half for me. Can empathize with you re the seemingly lack of care in the Rheumatology department. ( Not all , but some.) Maybe my highly sensitive nature doesn't help in these situations but some of their insensitivity can make a person lose respect ( even for themselves) trying to cope with this disease. It's really hard to keep strong with such uncertainties. xx

[Hidden in reply to Shalf]

With you on all counts Suzie, a little kindness and understanding go a long way x

[AgedCrone]

Ignorance was bliss & I was relieved. I had just retired & was raring to go doing all the things I had been planning for years. I managed to do most of them. Having a vivid imagination & being a bit of a drama queen I had been thinking, MS? Bone Cancer? MND? But never "Just Arthritis"!!! Little did I know!

Thankfully I was referred to a really caring rheumatologist who managed to explain the drugs I would need to take without scaring me to death, injected my ankles so that I could walk without the stick I had been relying on & I then just got on with it. In my mind I either dealt with it or let it beat me.That was in 1999.....I'm now on RTX, & leading a life not much different from most of my peers, & a lot better than some of them.

A word to anyone newly diagnosed.........listen to your medical team not Dr Google, if you read of terrible side effects of a drug you have been prescribed.....empathise with those affected ...but DON'T expect it will happen to you....I thrived for years on Mtx, but I could possibly have refused to take it if I had believed it affected everyone badly....nobody writes a post saying "I'm doing really well on XYZ" we only post when we are really unhappy with the drugs we are on! Consultant Rheumatologists with all their experience prescribe the meds they think will help you....don't fight them because you read or hear of a different drug you think you'd like to try....that really irritates them!

[Gnarli]

My diagnosis, finally, didn't come as a dreadful shock as I had been told over 20 years before that I had the Rh factor in my blood and had experienced occasional painful joints. The visions of gnarly, painful joints, being unable to do all those hobbies I enjoy, wheelchairs etc definitely were a massive downer. But it's now that I'm struggling tbh18 months in. Having been fiercely independent the frustration of having to find ways round a difficult task or asking for assistance with simple tasks really grinds me the wrong way. Dwelling on my limitations is a waste of time and I simply don't have the energy to spare. Mostly I just get on with it. We're all different and I'm sure you will find your own way. Hugs

J

[AgedCrone in reply to Gnarli]

Don't despair Gnarli...it does take time to get your head around sometimes petty little things.

I ranted for years that I still wanted to play tennis until I looked around & all my tennis playing friends around my age without RA were giving it up too!

I now refuse to waste time regretting what I can't do & get on with enjoying what I can.

I know ...a really annoying PollyAnna aren't I? But getting older sucks RA or not,& unfortunately it happens to us all! So as you say...let's just get on with it best we can!

[Hidden in reply to Gnarli]

With you on the independence thing Jan, hate it, hate it and sure i'm irritating people. But on a good day, i appreciate people's kindness: some lovely man in grocer's picked up my dropped change n packed plants for me, my son chopped vegetables for me. Bad days i feel like stupid clumsy old lady I ve become overnight, good ones i think aw, thanks 😄

[medway-lady]

Relieved it was not a terminal disease ! It means medications etc but other than that nothing has really changed. I just live with it and lead a completely normal life.

[hawker955]

Hello. Quite honestly, I was not happy! I'd seen my grandmother suffer until her death in her late eighties, and had been told that she'd been struggling for sixty years! However,my outlook changed a lot once my biological therapy started and I've never looked back!

[Ruth12345]

I was relieved for a diagnosis as had collapsed and hardly able to lift my head of the pillow for over a month. Went to see rheumy in wheel chair as could not walk. Took me & husband all morning to get ready for appoingment. So i thought good lets get on with it, when within a few minutes I had a diagnosis, however knew nothing about RD and made the very wrong assumption that it could be cured and I would be back to my old self in not too much time. For me it was over the next few months when I realised what it all meant was the worst and to be honest im still trying to get my head round it all 20ish months later. Its not just the physical side of it thats challenging.

I agree with those before me that have said not to look too much on Dr google and to listen to your medical team.

I really hope this all helps you. All the best.

[Mariechristine in reply to Ruth12345]

Thank you all for your response

I’m thankful.

Yes , google is not good but i don’t trust doctors. It has always been my problem.

They can have such an « I don’t care attitude » it’s painful. So here am i always trying to find answers on my own.....

I will keep you updated.

Thank you so much again.

I’m seeing a doctor tomorrow....... let’s see!

[patricia1193 in reply to Mariechristine]

Agree with you.Everyone should find out all they can about their disease.Visits are so short at Hospital and some Drs and nurses better than others.A bit of a lottery.I like to be in control as much as I can so will always research.

[Elswick]

I never accepted it I think that is still my problem today

[Shalf in reply to Elswick]

It's very difficult to accept Elswick. This site however makes me feel less isolated and misunderstood. Hope you also get some support from that too. Take care x

[BoneyC]

too long ago to remember and was only 6 in 1971.

[barbieg]

I was diagnosed 15 years ago after being diagnosed with Fibromyalgia 30 years ago. Didn’t help as GP kept telling me it was the Fibromyalgia. Went to a private Rheumatologist in the end as I was in absolute agony and as some one else said I couldn’t lift my head off the pillow and could only shuffle. The minute I shuffled in to the room, the Rheumatologist told me I had RA. I was so relieved to get a diagnosis. He examined me and sent me for blood tests which confirmed RA and then transferred me to his NHS clinic, so I was really relieved for a few days. The reality kicked in then and I thought I was going to be in a wheelchair, so did my husband as he was already planning the alterations to our house as he was a builder. Happy to say that never happened and once the medication kicked in (took about 5 months) as I was almost normal. He was a wonderful Rheumatologist who explained everything to me in a very kind way. Unfortunately he retired a few years ago and I still miss him. My GP even apologised for not sending me for blood tests.

[phil_54]

Hi, I was diagnosed 4 years ago and quite literally woke up in the morning and couldnt get out of bed, the day before i had pain in my left hip and it got steadily worse as the day went on, I eventually managed to get myself up but after 1 hour or so i felt so ill and in so much agony i couldnt stand it any longer and it was only due to my wife and daughters foresight that they reacted swiftly because i ended up collapsing and unconscious, i then woke up in hospital were i remained for 10 days with suspected sepsis in my hip, following numerous tests it was then that they diagnosed RA and Fibromialgia.

At first i thought my life was over but due to the incredible care from the department at my local hospital and all the support from home i realised this is not the case, Yes it has changed my day to day living but with the right meds and some considerable adjusting there is no reason why we cant lead a fairly full life, for me its about knowing your boundrys and finding that balance between doing and over doing and once they find the right balance of medication that works best for you then you could well go into remission.

Hope everything works out for you and the very best wishes from me, Please take care

[stbernhard]

I cried, wanted to crawl under my duvet and never come out again. Then I realised that like it or not, I have it and I have a life to live. With the help of an excellent consultant, medication and good information I did just that. There were set backs in the first 18 months or so, but I learnt to deal with them. All the best.

[Elswick]

Everyone has been a great help to me I no it’s early days for me I have been in pain for 12 months and only been on methotrexate for 10 weeks although I am not 100% I feel 10 times better than I was I still work manually in a warehouse at 63 and I would like to go back and finish till I retire 66 .But who knows no one knows what s round the corner thanks to you all x