Newbie

[Kibeth]

Hi all, I have been recently diagnosed with RA. Haven't started any medication yet got my appointment in 2 weeks. Since being diagnosed I've been suffering from anxiety and stress quite bad, I was wondering if anyone else reacted like this. Feel a bit overwhelmed and want to feel me again before starting medication!! Thanks

[AgedCrone]

Hi Kibeth....

I think we all had those feelings when first diagnosed, but a lot of the anxiety is fear of the unknown....and you will read here that stress is a real No No when you have RA.

Most people ..including a lot of GPs have very little knowledge of RA or what is available for treating it in 2017. Being diagnosed out of the blue is bound to make you anxious.......but hang on in there.

If you possibly can, try to keep occupied so that you don't spend too much time with Dr Google reading about all the negatives, or even reading on here about how some drugs don't suit some people.....99% of the time there is a drug for everyone with RA....a lot of people who post here with bad reactions to RA meds have other conditions that make treating it more difficult.

Before your rheumatologist appointment make a few notes on things you feel the Rheumy should know about.........if you are like me everything goes out of your head once you get in the doctor's office! If you can take someone with you...two sets of ears are better than one!

Now relax & think positively & you will be fine! I'm sure you will get plenty of support on this site.

AC

[Moomin8 in reply to AgedCrone]

Ditto AgedCrone - well put. Stay in touch Kibeth- you'll find this site a great support as we really do know how you feel. Also, keep talking to your family as they will be your closest support.

[Kibeth in reply to Moomin8]

Thank you, feel bit lost and the minute but will try and be more positive 😀

[Kibeth in reply to AgedCrone]

Thanks, just knocked me for 6. Felt ok before diagnosis know feel awful. Doc has said it's anxiety so need to try and chill a bit but not that easy 😬

[Yvonner2 in reply to AgedCrone]

Hi there.

Liked you reply about staying positive. Newly diagnosed also and overwhelmed by the comments and possible outcome of RA.

Hoping the meds will halt the RA and will hopefully retrun to some normality.

Seeing the rheumatolist for first time on Thurs.

[AgedCrone in reply to Yvonner2]

Give it time....your rheumatologist is not a magician & it may take a couple of tries to get exactly the drug that will suit you.

If you have questions ask your Rheumy Nurse ...don't just fret about it & worry yourself into feeling bad.

Don't read on here that one person has a bad reaction to Drug A, & think that you will too. Just reflect that some people have other medical conditions that complicate matters.

We are all different & we all have different symptoms & outcomes.

I have had RA for 18 years, have had ups & downs, but now lead as normal a life for my age as most of my friends.

Just can't play tennis if or golf....but right now I'm sitting in the sunshine in the Canary Islands.

So keep calm, take the meds & just get on with life!

[Yvonner2 in reply to AgedCrone]

Many thanks. I need some reassurance at the mo... Will let you know how I get on and enjoy your hols.

[Kibeth in reply to Yvonner2]

Hi, it does take time to take everything in. I'm getting there have the odd blip but defo trying to be positive. I've been on my medication 2 weeks only problem I'm having is a bit of heartburn! I don't google anymore, if you have questions either ask your nurse or the lovely people on here (they are fab). Hope reading some of the replies on my post it will reassure u a bit. Take care 🌸

[Yvonner2 in reply to Kibeth]

Hi there

Yes it's all very scary at the moment and diffinetely not going on Google anymore.

Thank you for replying and keep in touch.

[Yvonner2 in reply to AgedCrone]

Hi...

My body has been burning all day. Never had this before. Is this part of RA. Glad when I see the Rheumatolist on Thursday.

Appreciate you advice.

[Kibeth in reply to Yvonner2]

Hi, I've never had that. I'm sure if you asked the very lovely and knowledgable peeps on this forum they will be able to help u. Defo do a post because someone will be able to reassure u, I'm new to this too so I'm sorry I can't help x

[Yvonner2 in reply to Kibeth]

Thanks for replying.

[Yvonner2 in reply to Kibeth]

So sorry Kibeth... that message re burnIng was meant for AgedCrone. Still learning to navigate this new site. I realise your as new to this as me. Apologies.

[Kibeth in reply to Yvonner2]

No worries, sorry I'm of no help. Defo put ur worries on the forum and u will get lots of advice 😀

[Beaches2]

Hi and welcome

Yes I think what you are feeling is perfectly normal. I went into total panic mode, scared for the future and wondering what would happen.

I'm so pleased I found this site early on and lovely people telling me that it would be OK and that it was mostly perfectly manageable these days. This has been true for me. After a horrendous onset and trying to find a drug regime that worked, I am now doing just fine. Im 3.5 years into this, still working and more or less as I was before.

Life goes on, and you will be just fine too. You just need to go through a bit of a learning curve around the drugs etc.

[Kibeth in reply to Beaches2]

Thanks, it's reassuring I'm not the only one to feel this way

[Mhairi54]

Hi and welcome. Yes, know exactly how you are feeling. My symptoms came out of nowhere last January, and were pretty severe initially, so know just how scary and overwhelming it can all feel at the moment. Just take it one step at a time - easier said than done I realise! But just try to deal with each step as it comes and try not too think about what the future may hold. In a way we are lucky that we have been diagnosed now, as there are so many effective drugs available now than in days gone by. Agree with AgedCrone about writing down all your symptoms and what you have tried to manage your symptoms so far. And definitely take someone with you to your appointment, I have found that to be of real help. Take care.

[Kibeth in reply to Mhairi54]

Thanks, have put off writing on here because didn't know what to say but I'm so glad I did 😀

[Mhairi54 in reply to Kibeth]

Oh good. I'm so glad I found this site and have found it to be so much support. I hope you will too. You can ask anything on here, there's no such thing as a daft question. We're all in the same boat just trying to help each other through it. x

[Shazz10]

Hi kibeth and welcome. I can totally relate to your stress and anxiety. Think it's perfectly normal at this stage. I too am recently diagnosed and whilst I was relieved to finally get a diagnosis I completely panicked when I had to take medication and had really worked myself up into a state and without the help and encouragement I received on here I don't know what I would have done.

I got caught up with all the ever changing physical symptoms I have had over the last few months that I totally neglected my emotions and with other family stresses everything for on top of me all at once and I got a bit of a wall. Like agedcrone said whilst it's good to gain some knowledge of RA (I had no clue about it) try to avoid googling to much. And have a list of questions ready for your appointment. I had none and was just worried that as I had been subscribed a huge amount of steroids and lots of my symptoms had improved that they would say I was fine and I'd be sent home as some kind of fraud !! I now can't wait for my next appointment to really get involved and have lots of questions from what I have learned on here.

Since starting my medication, methotrexate, last week I've tried to just live one day at a time. Everyday has been different, small side effects some days, though have had some energy bursts which is new for me from the last three months so I'm really grateful for that. Try to be good to yourself and stay positive.

Good luck with your appointment.☺

Sharon

[Kibeth in reply to Shazz10]

Thank you, I thought I had something wrong but didn't expect it to be RA (not sure what I thought lol). Did go on google, worst mistake of my life, I ended up thinking I had everything going which has caused the anxiety. It's effected my appetite which is worrying me because of started medication. My family are good but feel I'm going on a lot so don't talk much about it

Sue

[Moomin8 in reply to Kibeth]

I remember when I was diagnosed, my gp tried giving me something for anxiety. I told him that it was simply just such a shock and a life-changing piece of news and that was all- I did not 'suffer from anxiety' as far as I was concerned and certainly didn't want any more medication than I was already on! Things did settle down in time and so did my anxiety. Just try to be patient, stay informed but don't look up too many things on Dr. Google! 😎

[Kibeth in reply to Moomin8]

I told doc I might not taking any tablets so maybe talking it out might help. I don't think I've given myself time yet so maybe I need a bit of patience and stop being so hard on myself

[Simba1992 in reply to Kibeth]

I think you are so right. Talking and asking questions is the best way to step by step getting a grip of your situation. This forum is a good place to process and learn how others have coped. You need to give yourself time and not rush into something that feels wrong or scarry. All the best, take care😊 Simba

[AgedCrone in reply to Kibeth]

This will probably sound like an Old Wive's Tale Kibeth, but do try to drink plenty ...no I don't mean hit the gin bottle, but water, squash even tea. I find the more anxious I get over anything I tend to get de hydrated, then I get a headache & after that everything goes haywire.

There are a lot of simple actions with RA that ease things. ...you'll find what helps you as time goes by.

Just look after yourself until you are settled on your meds, then you'll hopefully wonder why you got in such a tizz!

[Kibeth in reply to AgedCrone]

Thank you, just haven't felt like this before and it's not nice 😬

[Mhairi54]

NRAS have a helpline you can phone if you feel that you need to talk to someone about how you're feeling at the moment. It's really common for people to have these feelings and emotions, particularly when first diagnosed. Although my symptoms only started last January and I only got diagnosed in October, it's just starting to really sink in with me that I've got this for the rest of my life. I was thinking about going to my GP to ask about counselling as I'm struggling to come to terms with it all. And know what you mean about not wanting to go on about it all the time to family and friends. I wondered if speaking to someone who is completely separate from my life might be helpful.

[Kibeth in reply to Mhairi54]

My doctor has already got in touch with a councillor for me, she thinks it will really help. It feels like all I talk about is RA or anxiety so I feel this might help me to talk to someone separate. Always have to be the strong the happy mum/wife which I don't always feel I am ☹️

[Shazz10]

I would definitely recommend seeing a counselor. With all the different medications I've been on I didn't want to add antidepressants in the mix so I have been attending one just for the last three weeks and already find it great. I hadn't realised how all of this had affected me emotionally until I actually vomited words non stop to her at my first session. It's no miracle cure but definitely helps to not be so hard on myself and to try to help​ me balance my family commitments and stresses with what's right for me.

As a mum especially I am so used to putting everyone else first I think that it is hard to shift the focus on to ourselves and we feel guilty not being able to give 100% of ourselves to our family which of course we can't possibly do at the moment.

Anyway I found being able to vent and rant to her with no fear of upsetting her it worrying her like you would a family member or friend invaluable.

Sharon ☺

[Kibeth in reply to Shazz10]

I'm hoping it might help to get me back, I just haven't been myself since being diagnosed and it's time for me to be happy again

Sue 😀

[Shazz10 in reply to Kibeth]

Ah I'm sure it will help and you will get there.

It's still really early days and for me too and I feel different every day. I'm trying to be positive but allowing myself to have bad days too realising that they will pass. It's a rollercoaster but the good days are in the mix I just have to make sure I notice them and not just focus on the bad days.

Keep strong one day at a time 🙂

[Pickledaisy]

Hi Kibeth. I was only diagnosed 2 weeks ago and no meds yet. I only went to my gp with a sore finger and 30 mins later, was being rushed for blood tests, MRI scans, etc. I'm nervous about the drug regime my consultant wants to start me on and all the blood tests (needle phobia!) but looks like a great community so let's walk this path together? Best of luck xxx

[Kibeth in reply to Pickledaisy]

I'm the same went about a bad wrist and then all this!! I was told for ages my joint probs )which is a couple of toes, a finger and left wrist) was hormonal!! I'm going next week so will c what happens next. It defo seems a great forum so good to have people to ask for help/advice and reassurance. Will keep u updated, thanks for replying 😀Xx