Recently diagnosed RA: Hi New to all of this not sure... - NRAS

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Recently diagnosed RA

Pricetowers profile image
41 Replies

Hi

New to all of this not sure what I want to say as it’s quite raw….

I feel lost hurt upset confused to mention only a few .

I also have fibromyalgia and other health issues, I wish I could have my old life back , ups and downs nothing stands still for long, I feel on my own my emotions are all over the place .

My anxiety is off the scale I feel as if my body is full of electricity on the edge not knowing which way to turn .

My whole life is sh.. my relationship is going through the mill and I have no one to talk to ..

I’m sitting on my bed trying to get going but I feel so poorly crying inside and trying so hard to feel differently but to say I’m lost is an understatement.

Sorry for going on …..

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Pricetowers profile image
Pricetowers
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41 Replies
Boxerlady profile image
Boxerlady

Please don't apologise - that's why we're here, to support each other. NRAS has a great helpline so maybe you could ring them and talk to someone who really understands and who might be able to start to put your mind at rest. Keep posting with any questions and concerns and we'll help if we can. 😘

KittyJ profile image
KittyJ

Welcome to the group, I’m glad you’ve found us and hopefully we can be of some support to you. You’ve no need to apologise at all, feel free to vent on here, we all know what it’s like after being diagnosed and the emotions you go through. NRAS have a helpline that you can ring to get support and also their publications are full of helpful information, they’re free to download or you can order copies to be sent to you.

nras.org.uk/publications/

There’s a wealth of knowledge here from the people who are living with RA, although we can’t give medical advice we can help you with support and ideas to try and help you whilst you wait for your medication to start working and with difficulties in every day living.

Try not to consult Dr Google but stick with sites like NRAS and Versus Arthritis. It’s not necessarily all doom and gloom, there’s many people out there back living their lives having found the medication that works for them. Fingers crossed that’s you soon too 🤗

NRAS helpline info and phone number
medway-lady profile image
medway-lady

I’d suggest you seek counselling as RA is just part of what might seem a larger set of issues. I think that the NRAS helpline might be a good place to start but you could also contact your GP as whilst it’s great to post on here, nothing is the same as a personal interaction. I hope you’re feeling a bit better now and remember you are not alone, the diagnosis of RA which can be treated might be positive and controlled in time. I can see you’ve had a lot to deal with but don’t give up, things can and will improve just might take a bit of time. Xx

Fruitandnutcase profile image
Fruitandnutcase

Sorry you feel so down. Know what you mean discovering RA on top of fibromyalgia I don’t know what it is about autoimmune conditions - once you get one they like to hunt in packs and then they like to invite all their friends along to join the party.

You’re in the right place here for support and I’ve found that there is always someone who has experienced what you’re going through or has an answer to what you want to know - whatever it is.

It would be a good idea to call the helpline for a chat. They might know of a local support group where you could meet people face to face if you want. Stay positive though - you might not get any worse and you might get better - or that’s what I tell myself.

Pricetowers profile image
Pricetowers

Thank you for giving me advise my life is crashing arrows me as my husband as just told me that he no longer wants to be with me ….

KittyJ profile image
KittyJ in reply to Pricetowers

I’m sorry to hear that 😔The NRAS helpline is there for family too if you think it may help your husband to talk to someone. 🤗

Fruitandnutcase profile image
Fruitandnutcase in reply to Pricetowers

Oh gosh, I’m really sorry to hear that - nothing like kicking someone when they’re down is there!

Might sound weird but you will get through it all - I’ve had friends who didn’t think they would ever get over their husbands leaving them and they all did and have got themselves sorted out. ((((Big hugs))))

BeachsideVia profile image
BeachsideVia in reply to Pricetowers

so sorry to hear your pain. Believe me, better to be far away from a heartless selfish person like that! You will realize you have wonderful caring people around you who will take your hand and move along with you on your journey.

Hobbledehoy profile image
Hobbledehoy in reply to Pricetowers

I’m very sorry that you’re having to deal with several major issues at once. Besides the excellent NRAS helpline, bear in mind that Samaritans are ready to help you by listening to your problems. Also, if you have a key-worker of any kind, they will support you too. Please consider talking to your doctor as well; and maybe your surgery has access to a community mental health nurse/similar. On the positive side, it is actually good that you have been diagnosed. You must have been suffering and now it can be treated. Very best wishes.

Madmusiclover profile image
Madmusiclover

That’s a double blow. I’m so sorry. Give the Wren project a call/drop them a line. Would endorse calling NRAS helpline too. We are here for you.

wrenproject.org/

Pricetowers profile image
Pricetowers in reply to Madmusiclover

Thank Yoi

Sunshinereturns profile image
Sunshinereturns

I’m so very sorry to hear all this. This sounds a horrendously hard time for you.

football64 profile image
football64

you are not alone. There are thousands of us going through what you describe - unfortunately some of it is the circle of life, getting old.

We develop ailments, joints ware, organs fail. We have to accept that change as sad as it is.

Dig deep and know that you must be strong and go with it. Do the best you can to stay feeling brand new, but know that as humans we will ware with time.

take care and remember we are all in the boat with you.

Seatgeorge profile image
Seatgeorge

Yes, tough when you first find out, but it is manageable with the correct drugs and a good consultant, it's not a 5 minute fix takes 3 to 4 months before the drugs kick in and things get better, but o ce they do you will pick up, good luck.

GinnyE profile image
GinnyE

Maybe a chat with your GP may help. If you're dealing with illness and then the trauma of your marriage problems, anxiety will be so high. It's very hard on you and your GP may be able to help in some way. One day at a time. I hope you have family and friends who you can talk to.

Evie3 profile image
Evie3

sending hugs….Ring NRAS helpline x

Haz58 profile image
Haz58

This is a good place to start the journey of healing the mind. You have more anxiety with both the diagnosis and your husband. Please seek help from your GP, NRAS and Wren as already said. Sending you gentle hugs and we are all here for you. X 🌹

Whereisthesun profile image
Whereisthesun

Oh bless you my darling!! You are not alone. Please get some help. NRAS are brilliant! I have a dedicated counsellor and she is wonderful! They are so supportive. Most are volunteers who also have auto immune problems so they understand us better than most. I am so sorry to read your message. I have been in a similar situation and as much as right now this minute it doesn’t feel like it there will be some light eventually. Do you have a local Nuffield health group? I do a joint rehab programme with mine. It’s free and we meet twice a week. It has helped me immensely. There are things out there my lovely. I do hope you find some. Honestly this group are also great! Sending you lots of love and prayers xxx

SLCR profile image
SLCR

Hang in there. I’m diagnosed recently too, it’s taken a couple years to get the diagnosis, but now I know and I’m learning it’s my “new normal”. I had relationship issues 2 years ago at the time I first got sick or started symptoms. It’s been a journey, but you’ll see how strong you are and you’ll find reasons to feel joy and you’ll be living your “new normal” soon. Stephanie

Stills profile image
Stills

do not despair, you WILL survive these hard days, neither the RA condition nor the heartache of the relationship will be worse than today. You will get medical help and counselling for both and then each day is a step forward. I’m sending you strength and hugs.

Sheila_G profile image
Sheila_G

Bless you. I am so sorry you have all this weight on your shoulders. You have a lot to deal with and when you are feeling so poorly it seems there is no end to it but there is. Please don't despair. There are lots of people who can help you. Of course I don't know you so some of these may not be appropriate but here are a few people you could speak to: family, a close friend, NRAS, a local church, Samaritans, GP and us. We are here to listen, share, sympathise and offer support but of course we can't help medically. I think it would be a good idea to make an appointment with your GP to discuss how terrible you feel. He/she might be able to prescribe something short term to help you through this difficult time. It is always better to try to deal with one issue at a time or you get bogged down with too much and nothing is dealt with. Sending love and hugs. God bless.

Daisylocks profile image
Daisylocks

So sorry youare feeling rubbish. Think we can all empathise as all been there. Why dont you phone one of NRAS helpline people as they have usually been there too? RA is enough to contend with, but u have more than most. I am 9 yrs in and still feel I am on a rollercoaster and the only thing that helps is talking to another sufferer as nobody gets it unless u have it. Thinking of u and hope ufeel better soon x

EarthRock profile image
EarthRock

PriceTowers......You can do this. I know you can. I completely understand what your saying and experienced similar, like many say on here, it will feel like the world is crashing down right now, but it wont stay like this for ever, Make sure your GP/Rheumy team are working out what meds you need, it might take a few goes to find the one that works for you so keep going, Ive had a recent flare which was the worst ive ever had, bedbound for 6 weeks, but we tried new meds, and within a few weeks of trying a new one, I was back to my old self, like the flare up never happened, so keep going.....its hard right now and we are all behind you, we all understand on here. But there is light at the end of the tunnel.

wilbertjellyfish profile image
wilbertjellyfish

Climb into that bed and have a good cry. It's not going to help your pain but there is nothing wrong with feeling sorry for yourself at times. It is shit the whole thing but you are going to feel better soon it just might not be today.

😘

Greendaisydog profile image
Greendaisydog

Hi Pricetowers,I am so with you darling.

My relationship broke down early 2020. My 5 year old son and me moved to a new home in a new town where we knew nobody.

Then COVID hit and we were locked away together alone.

I became really ill almost immediately and the pain I suffered was dibilitating.

Trying to get pain killers, Dr appointments and help was so hard. I wasn't getting a diagnosis and this continued for months.

It was the worst time of my whole life. I was grieving for the loss of my family, we were totally isolated and my body was trying to destroy me and my son's lives.

It has been a long road but I also was eventually diagnosed with Fibromyalgia. Then earlier this year I was also diagnosed with RA.

I do know something of what you are going through, very similar situation.

I am now over the grieving and my son is happy. We have met some wonderful neighbours and my pain is being managed, mostly.

The main thing is, I am happy again and you will also make it!

The only thing we can rely on in this life is change, try to remember that. Things will change! It's inevitable 😘

Good luck, I am thinking of you and sending love & strength xx

Sapphire1701 profile image
Sapphire1701

pricetowers.. can’t add much more than all the other posts on here.. this space is such a comfort and I hope all these responses give you a little much needed support.

You are going through so much right now, being diagnosed with RA and also living with fibromyalgia are just huge on their own. And then your relationship..

I too am quite recently diagnosed.. 9 months now, hit rock bottom shortly after..fighting this alone.. but reached out here, to NRAS, to Wren, snd slowly but surely I am adjusting to this new me. But oh my, has it been tough,

Post here whenever you need, we all have some understanding and sometimes just writing and sharing can help a little. Try as best to be kind to yourself.. or come here so others can treat you with the kindness and support you need.

You are not alone xx

Pricetowers profile image
Pricetowers in reply to Sapphire1701

thank you for ALL your kind words xxx

Sapphire1701 profile image
Sapphire1701 in reply to Pricetowers

my pleasure..this space helped me when I was at my lowest.. so just know we’re here xx welcome to DM me if you ever need too x

Koroush profile image
Koroush

I was there with all if not more problems than you just stay strong keep your self +ve

it will get better talk about your issues to friends GP , RA team don't keep it in

It WILL get BETTER

Pebblescat profile image
Pebblescat

hello. It’s a shock at first if you didn’t suspect it. And it takes a while to sort out the medication and find what suits you. No one’s life stays the same. With or without illness, things will inevitably change. We can’t go backwards only forwards. Find the help you need. I recommend phoning the helpline of NRAS (national rheumatoid arthritis society). They can listen and give useful advice. Tell your Rheumatology team how you feel. Later when you have come to terms with it a bit, I strongly recommend getting referred to a Pain Clinic. They will help you with coping mechanisms for pain and ways to move forward. Good luck.

madme1 profile image
madme1

You are not going on, you are hurting and that is very understandable. Like you I have other health conditions, some due to the RA others not. Sometimes the only people who understand are those who are hurting the same as you, and even then they can hurt in a different way, but have a better level of understanding. It's good that you've come on here, that shows a strength. Having to deal with so much, you have to remember to be gentle and forgiving of yourself, believe me that is something I've learned after 10 years. Don't be afraid to let off steam, ask questions, don't take everything the medical people say at face value. Do you have family members you feel comfortable talking to? You are stronger than you think and you matter, sending big gentle hugs.

Garnacha profile image
Garnacha

Aaw I'm so very sorry you're going through all this, it is sh#t. I was diagnosed in November 2020 after seeing a rheumatologist privately in January 2020, covid hit so took till November for a diagnosis.

Whilst I've had some relief with some of the medication, the last couple of months I've felt I'm taking 1 step forward & 2 steps back. I go to bed & cry & wake up & cry, in-between I go through the motions as if nothings wrong.

I saw a gp Wednesday & just burst into tears, he referred me straight away to a mental health nurse, I'm so embarrassed/ ashamed I need to see one & know I'm being daft about it but......

I saw the nurse yesterday & the tears just flowed, she said I had severe anxiety with flight or fight mode on high alert & depression, she's prescribing me with antidepressants but needs to check with the gp first because of all the other meds 🙄

Please go & see your gp, there is help out there, I had depression a number of years ago & the tablets definitely helped, I'm just thinking for me I already take 18 a day 🙄

This forum is amazing, everyone is so supportive ❤️ so please post any worries you have & I sincerely hope things take a turn for the better for you 😘😘 xx

NanaFifi profile image
NanaFifi

You don’t need to apologise, like boxer lady says, we’re here to support each other. I wish HeslthUnlocked had been around 43 years ago when I first became ill with RA & Lupus. Ask away, ask anything, there’s no such thing as a silly question 😉

(btw Versus Arthritis have a great helpline too and they’re a mine if useful information.)

Best of luck moving forward. X

Happy5 profile image
Happy5

Awww sorry to read how much you're struggling, we know how you feel.

I describe the early stages of diagnosis as experiencing a grief for old life, and coming to terms with new life. The first year is a roller coaster of finding best treatment, body getting used to it. Along with dealing with pain, and mental distress.

You will get there, your RA team should have given (or will do) you access to an advice line, talk to the specialist nurse they have lots to offer about your care.

I've used a local talking therapy via the phone (self referred) a couple of times when my head wasn't great, also at different times antidepressants helped, obviously the latter is your call.

Lots on here have invaluable info, give support, being able to off load here has helped me , knowing you're not alone with similar struggles.

Take it a day or even an hour a time, to get through.

Sending 🤗

Inanotherlife profile image
Inanotherlife

Hi Pricetowers,

I’m so sorry you’re having to deal with all this at once, life can be very harsh at times.

I can’t add much more to all of the good advice and kind thoughts already shared above but wishing you the best and hoping you can get support and treatment soon x

Stills profile image
Stills

I remember your poignant post so wondering how you are coping?

No need to reply if you’re struggling.

Pricetowers profile image
Pricetowers in reply to Stills

hi

Thank you for asking I’m at a friend house over this weekend, being spoiled .

Resting and taking my time as I’m up and down all the time , I don’t want to speak but I have to which is helping.

Hope your ok ?

Sending tight hugs to you xxx

Wafflefan profile image
Wafflefan

I echo Stills post. I'm new to this forum but not RA. This is actually my first post of any kind on here. Just been thinking about your post too, it resonated with me and I was wondering how you're doing. Everyone is so supportive on here, like a warm and understanding virtual hug. I'm sending one to you. I hope you're finding the support you need. Hope you're okay.

Pricetowers profile image
Pricetowers

thank you so much up and down but I put a front on so nobody would know how I’m feeling …,

My friend as asked me to go for a meal tonight I have said ok as I don’t want to sound ungrateful and I have been staying over the weekend at hers …

Hope your ok send you also a big hug full of love xx

Wafflefan profile image
Wafflefan in reply to Pricetowers

So lovely to read your replies and that you've got friends around you. My gosh I know exactly what you mean! You do put up a front. It's difficult to put yourself out there when you're feeling so vulnerable. That's why I'm loving this forum so far, you can put your feelings down and not feel so exposed. It's actually helped me (wish I'd discovered it sooner) be more honest with my friends. If I don't feel like it but need some understanding, I read posts on here for comfort. Hopefully, when you're ready you can share more of your honest feelings with your friends. I know how hard that is though because you really need your them right now, in whatever form, you don't want to do anything to lose them. I've found you actually find your true friends, let you rant and feel, do (or not do) what you want when you share how you feel little by little. Keep posting! 😊

Morning. I would ask your GP for a referral to IAPTS so that you can get some counselling. In the meantime, phone NRAS and contact WRENS… details will be on the NRAS website.

It is a lot to take in, and unfortunately we are all left to just ‘get on with it’. Many of us don’t have as support system in place, and it's a huge shock to have your life implode.

Be gentle with yourself and take a day at a time. Don’t expect things to happen quickly. This is a marathon, not a sprint.

Treat yourself with chocolate etc and get some ready meals in. This may well be the worst of it (before the meds kick in) so make things as ‘manageable’ as possible.

Also educate yourself on things; read all the NRAS website/ leaflets and keep track of everything … appointments, meds, symptoms etc. in a notebook, so that everything is chronological and in one place.

Take care 💐.

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