Totally overwhelmed and scared 😟

[Lauranorder]

I just got diagnosed with RA last Thursday and I’m totally overwhelmed. I can’t stop googling, which my common sense tells me I shouldn’t do. But I have, and now I can’t stop thinking the grim reaper is about to tap me on the shoulder. I sound like a crazy lady, which in itself is crazy because I’m normally such a level headed person. 😳 ARGHHH

[ITYFIALMCTT]

Hello!

It's entirely natural to be scared. NRAS has a helpline for people - and one of the reasons that you might call it would be because of a new diagnosis and feeling overwhelmed.

Helpline: nras.org.uk/helpline

This forum is full of people who understand what you're going through and are nodding along with the description of being a levelheaded person who has been knocked completely off-kilter by this unwelcome diagnosis/news.

Sorry you've had to join this forum - but - welcome.

Post any questions etc. that you have because there's usually someone who can provide a suggestion or signpost you somewhere helpful.

[Lauranorder in reply to ITYFIALMCTT]

Thank you so much. Not so lonely now ☺️

[Cherub198889 in reply to Lauranorder]

You will never be alone now. Even in the middle of the night when your family is sleeping. It may be 3am in the UK, but it's 6pm on the Pacific coast of North America. When I first joined I felt alot of comfort knowing I could always chat with someone.

[Mhairi54]

I really feel for you, I remember what a scary time that was when I first got diagnosed. I was really glad when I found this site. There's always someone around to answer any questions, or just to "listen" if you need to have a moan. Take care. Mhairi. x

[Mandy8175]

Hi!

I hate that you have this disease, but am glad you found us! I have been on here for almost two months, and I feel supported and understood!

[helixhelix]

We've all been through the crazy lady stage (and a few crazy men).....so welcome. I was measuring myself up for wheelchairs within days of being diagnosed. 7 years later and it's all 95% normal, not a wheelchair in sight although I do have a jar opener.

I'm actually probably fitter now than when I was diagnosed because I look after myself properly, eat properly, sleep properly and exercise daily. So try not to google too much, and have hope for the future.

[Neonkittie17 in reply to helixhelix]

I told my hubby we'd need to widen the doors for a wheelchair. He said .. Absolutely not needed.

[Kai-- in reply to Neonkittie17]

.

Funnily (or perhaps, not so funny), I'd gingerly attempted to broach topic of euthanasia with beloved (should things 'progress further' & 'the time' neared ⏱ ) . . . 😔

Beloved, also exclaimed (unhesitatingly), "Absolutely NOT!" 😨 😳

And, thoughtfully 🤔 , lovingly 😘 , placidly 😌 added — without missing a beat — ". . . can shoot you out back, f a a r cheaper." 😳 😯

.

🗯 S c r e a m e d 🗯 with laughter 😂 😂 😂 . . .

(Ahhh . . . 'the joy of level-headed pragmatism' . . . 😐 ☺️ )

We knew we'd get through this 🤝 & you will too. 😌 🙏 ☺️

.

🙏 🍀 🌺 🌞

.

[AgedCrone]

All we can do is take it day by day....but when you are newly diagnosed a day seems like a week.

But I'm sure 90% of us settle down quite quickly,& with help from all the experience gathered here we usually stumble through & have the odd laugh

So laurandorder, welcome & don't take too much notice of Dr Google, but do make friends with your Rheumy nurses, they can be a lifeline.

[Hidden]

Welcome to this lovely forum. You can ask as many questions as you like on here, get that frustration out of you. There's always someone who'll give you the information you need.

Please don't do Google. That is just information overload. Best to ask on here, because everybody is different, with all varying symptoms. The info your getting from Google, dose not mean you'll get everything listed.

Stick with us, & we'll be there for you.

We understand what you're going through'

Ruth

[nomoreheels]

Hiya & welcome Lauranorder. Ok, so you know googling isn't the best thing to do so concentrate instead of asking those who have been there, we're far more reliable & will share our experiences, you only need to ask. Maybe a look through the NRAS website would help as well nras.org.uk

I'm sorry you've been diagnosed but now you have you're on the first rung of the ladder to feeling better. The meds don't work quickly so a little patience is required & it's not always the case that the first ones you're prescribed will be the only ones because there's no one size fits all but you'll get there & we'll be there to support you. So any questions just ask, we've lots of info between us. 😊

[Eiram50]

Hi Lauranorder

I can understand how frightened, confused and yes, overwhelmed you must feel. I remember that feeling clearly.

But don’t fear, when inappropriate treatment plan and in time, things will settle down and you will see an improvement. As NMHs said in her post, most of the meds can take up to 12 weeks to work effectively so patience definitely is required.

So, welcome to this great community. If you have to be anywhere, this is one of the best places to be.

No matter what your question, there’ll always be someone who is here, willing to help and if you just need to let off steam or simply reach out to feel less alone- we are here.

Again, welcome.

Marie

[keeta]

Welcome lovely .i think we can all remember what it feels like to be told .and then this consumes your every thought . And friends and family as lovely as they are don.t understand .ask as many questions as you like .day or night .we have a few night hawks .we pull together here .honestly i could not .carry on without all these lovely people. Good luck sweetheart .and keep calm .xx

[Neonkittie17]

Laura .. Do phone NRAS and they will reassure you. They are lovely and expert. Have a chat here with us if you feel down. It's natural you will feel scared. I was too. xx

[Lauranorder]

Thank you all so much. I do have at least 1000 questions but I’ll get them in to a sensible order 👍 I already feel comforted knowing there are so many lovely people who know just how this feels x

[Jacki08 in reply to Lauranorder]

Hi and welcome. Haven't time for a long reply as just going to work. Ask any questions you have and someone will send you an answer. 😊

[hatshepsut]

Sorry to be saying welcome, but you're in the right place!! And if none of us have the answer, we know how to find it, It's frightening and lonely and people don't understand....but we do. The worst bit is the diagnosis....now at least you know what you're up against Your rheumatologist and specialist nurse become important people, and as someone else said,most medications in tis game take about 3 moths to work,,,,and then you might have to change, or add. Blood tests will be running out of yout ear... second thoughts that mightsolve my uncooperative veins😮....s

We are so lucky , we now have a large variety of treatments and new ones are being developed, Tonight you took the first positive step and found us

As long as you want, you will never be alone with RD again Take care M xx

[Cherub198889]

Hello Lauranorder, please listen to your " level headed person" and stop the google. We are all here to support you and offer you comfort. RA is a scary disease, and people suffered horribly before the new treatments... Thank God the medical profession has discovered new drugs to help us live a full life.

All my love to you

Sue

[Hidden]

Welcome please don’t google... I did that to at the beginning and you end up just focusing on the bad stuff. Hope you have a good RA specialist and we are always here to talk 😄

[Ruth12345]

Hi Lauranorder

I agree with everything said so far.

Well done for finding this site so quickly. I didnt sign into it until recently aprox 9months after diagnosis. Not to sound too dramatic but I cant put into words how much better I feel about the future just from reading what people contribute and reply to others on here. Know you are not on your own with this. You have professionals and us who understand plus whoever else in your life to hopefully support you. My family & friends are wonderful and supportive but dont understand,how can they. So as many others have said be patient, ditch google and ask and txt away.

Take care and be kind to yourself.

Rx

[Louis-]

Hello and welcome. You are well with in your rights to be afraid but just know there is help there is a treatment plan out there for you .listen to your rhumy and the nurses they are fab and when ever you need to let off steam or just ask advise everyone one here will try and help .good luck

[Witness2]

Hi Lauranorder, and welcome to the best source of 'How it really feels to have RA'! Sorry it's necessary though 😔 I haven't grasped how old you are but you look young (and sporty!) in your pic. When I was diagnosed 37 years ago, the drugs were rubbish and deformities rife. The picture now is SO different. I've met inspirational people whose lives haven't been blown off course: women who've had babies, play sport, maintained careers - men too of course. No need for me to repeat what the lovely people above have said, just know that while it can be tough at times, especially while you settle on the right meds, it's far from being the end of life as you know it. Do let those you love know how you feel and what you're going through. We're so misunderstood.

One last thing, if you're not happy with your care, firmly pursue the treatment you deserve and need. My rheumatology team are great but pretty damned passive. I have to raise every topic that concerns me.

NRAS is a fantastic resource which didn't exist when I was diagnosed, there was no internet and no way of reaching out to find others affected by RA. I think I would have felt less isolated and unhappy if there had been. Read the NRAS publications rather than Google for properly researched and evidence based info. Look after yourself x

[Lauranorder in reply to Witness2]

Well now I feel MUCH better just for being classed as young and sporty looking 😊 I’m actually 52 years young and these days sport consists of getting out of bed successfully 😄👍

[Fra22-57]

It's just what I did and still do for lots of things.Google is amazing but too helpful at times.Anyway everything is not how you will be .If you read paper you get with any tablets of side effects it doesn't mean you will get them all.

Medication given is also supposed to help you and dampen down your condition so try some prescribed for you.There is alot and some work for others that won't work for you.

If you stress yourself out you will make your condition worse.

[Patsy-57]

It is scary to find out you have RA. This place is a great help for all of us because we do understand what having RA is like. We live with it. We celebrate the good days and we offer support for the bad days. You are not alone.

Patsy 57

[KiwiGirl78]

I totally empathize. I was diagnosed in June and have been terrified and weepy. I have to believe it will get better. Just feels overwhelming now. If you are in tons of pain like me, I think it can be hears to get perspective. I just picked up a book called "Managing Pain Before it Manages You" and hoping it helps. Good luck to you!

[Simba1992]

Hello Lauranorder,

RA is scary, it's also a condition with very many outcomes and faces. For most it is something with overwhelmingly scary facts. We are ill prepared for this shock diagnoses and we are far from ready to reflect on all the facts this is why googling in the beginning really doesn't help very much only makes us more anxious and overwhelmed. You need to start taking one step at a time. This forum is great help with the first shock. Then starts the real work of understanding treatment options and seeing the whole picture as clearly as possible. We all have our individual journey and there is no treatment that fits all. My advice is to take baby steps before making big decisions about treatment. Most of the time there is ample time for reflexion when dignoses is received. Main thing to control pain so that clear thinking is possible. NSAIDs usually do a good job in the beginning.

I wish you all the best. xxSimba

[Olmettig]

I completely understand how you feel as I was diagnosed in June. But, do not look at it as a death sentence!! Everybody is different and this support group on this website are extremely helpful. There are so many different medications or Natural medicines that will give you relief. Keep a log book, with all of your labs and medicines so you can document how you feel. Because the best advocate is yourself. I am learning that right now and when I do not like how I feel, I let the Rheumatologist know and we talk about other options. Keep us posted and wishing you relief!

Geneen

[Amkoffee]

I was also just diagnosed last Friday so one day after you were told of your diagnosis. I am also assuming this is the only disease that you have that causes pain. And I don't mean to make that sound like it's not a bad pain because it knocked me down. But I have lower back pain that I've had for 13 years and then about a year ago I was diagnosed with something called polymyalgia rheumatica. It causes all over muscle pain. So essentially now my lower back hurts and has osteoarthritis in it too. My muscles hurt from the PMR and my joints hurt because of the RA. I am more than a little in pain I do take prescription pain medicine and I couldn't live without it. But like you I feel very overwhelmed. The first thing I did was get on Facebook and find groups for RA patients. In any event I am sorry that you had to get the diagnosis. I hope they can find a medicine that will work for you.

[Kai--]

.

😂 🙃 🤣

.

No grim reaper ☠️ ⚰️ 🕳 . . .

Quite the opposite, Lauranorder. . . 🤗 👼 🙏

Have a look-see over at 'RA Newbie Introduction': healthunlocked.com/nras/pos...

Wishing you the very best, Law&Order (👩‍⚖️ ⚖️ ). 🙏 🍀 🌺 🌞

.

.

Now, let's . . r e a l l y . . try to scare 😱 😨 you:

.

👻 🎃 🦇 🕸🕷 👹 🐀

.

[AbbeyRoad]

Being newly diagnosed is the worst! I was terrified and could only thinking of being disabled and sick all of the time. And I was in bad shape for a while, but with medication and with a lot of knowledge and trial and error with different treatments, I'm doing really well now. And you will, too. My advice for you is this...Don't stop asking questions. Learn as much as you can. There are a lot of treatments out there - some aren't worth it, many are. Know that YOU are in charge and if a medication doesn't feel right, listen to your body. And please don't give up. Take care.

[Chrissycl]

The good advice I got was don't trust Dr google.