Struggling to accept RA diagnosis

Rj14

Hello all, so my story begins in Jan 2023, swollen fingers, red hot hand joints out of nowhere. By end of February all my joints except hips, shoulders & neck were swollen, red and hot. Referred to rheumatology and diagnosed in March with RA. Put on steroids for 4 weeks, then mtx tablets, then sulphazaleine, then mtx injections (currently).

over the last 2 weeks I’ve had a new batch of symptoms, unexplained bruising, can’t eat, constant nausea, can’t sleep, severe exhaustion, breathless. Seen GP who ran variety of tests including cancer screening.

there was a part of me that was hoping for a cancer diagnosis at least then I could battle it for a couple of years and win or lose and it be over, found out today all tests are normal and these symptoms are down to a uncontrolled RA. How awful is it that I was hoping for this. I just can’t come to terms with this horrendous disease, it’s ravages me, I’ve lost 2 stone, I can’t open bottles or do any exercise at all, I feel broken and hopeless. I’ve started anti depressants to see if that can pick me up but I just don’t know where to go from here now. I can’t just accept that these symptoms are part of me and my life now.

anyone have similar feelings and any advice on how to accept and come to terms with your RA diagnosis.

Ellen

Good Morning @RJ14. A very warm welcome to the online community.

Reading your post I can see how quickly your Rheumatoid Arthritis (RA) has come into your life and what a huge impact it has had on you since only January this year.

The affects your RA has had on you in such a short time is massive leaving you feeling ‘broken’ and ‘hopeless’ and that the disease has ravaged you.

You sound, maybe, shocked (?) that you were almost hoping that your symptoms might be cancer. Something hopefully curable rather than the Rheumatoid Arthritis.  

I am so glad you have found this forum and hope it will help you to be able to vent some of these emotions in a safe, non-judgemental place. I suspect you are in no way the only person who has experienced thoughts like you had about cancer.

Would you consider contacting our helpline I wonder? It might help to talk to a voice as well as to receive the support of our members here in the online community.

https://www.versusarthritis.org/get-help/

Before I leave you to hear from our members I would like to attach some information for those newly diagnosed. A lot of what you are experiencing is so common that Versus Arthritis put the information together to help people in similar positions to yourself.

https://www.versusarthritis.org/about-arthritis/newly-diagnosed/

I hope you’ll continue to post and allow everyone here to support you.

My very best wishes

Ellen.

frogmorton

Hello @Rj14

welcome to the forum from me too.

You had had a really tough time I can see that reading your post.

A lot of what you have written others have said before you including me.

I also lost a load of weight and wished for almost any other diagnosis just not a 'forever' diagnosis. These are the cards we have been dealt aren't they? I think someone here, maybe @stickywicket once said 'why me? Why not me?' She had a point just bad luck.

You have been far more sensible than me already taking some antidepressants to try to help yourself is such a good thing to do. As is coming here to get support from others who understand. We won't judge and unlike your family and friends we won't be devastated - the way they are.

I hope you will do what Ellen suggested and ring the helplines. I did I rang them twice and both times they had to wait for me to stop 😭 bawling.

I am so sorry this has happened to you, but everyone here is so lovely and supportive. I can promise this - you are now no longer alone ((()))

Toni x

Jane68

Hi Ellen,

Sorry you've got a diagnosis and are feeling lousy.

I got my RA diagnosis last July and was put on steroids, then Methotrexate injections which made me so unwell. My liver levels got too high and they took me off methotrexate after 7 months.

I'm now on Sulfalazine and hadn't realised how bad I'd felt. I know everyone is different but noted you'd changed to injections and wondered if it was a similar thing.

Hope you feel better soon.

Rj14

Hi Jane68, so initially I was put on methotrexate tablets 15mg going up to 25mg however after taking just 1 dose I developed a throat infection and then had to have a course of antibiotics, I also had awful nausea and extreme fatigue. Then I had to try again and had a second dose once I was off the antibiotics and I developed a weird rash so again I was told to stop. Which was actually good as the tablets were making me feel so unwell and nauseous I couldn’t eat for 4 days a week. Then I got switched to sulphazaleine which I tolerated for 8 days before spending day 9 vomiting and suffering with a hemeplegic migraine. The sulphazaleine also effected my mood I hit rock bottom. So my rheumatologist said to try methotrexate injections, starting me on a low dose working up to 20mg and taking folic acid 6 days a week. So far I’ve had 1 dose of 12.5mg and to be honest I don’t think I’ve had any side effects at all. Hopefully it’ll continue this way however I’m doubtful, I think as the dose increases I’ll probably come out in some rash or come down with some infection which stops me taking it.

Rj14

https://community.versusarthritis.org/discussion/comment/710505#Comment_710505

Thanks for your kind words. It really is a life changing diagnosis isn’t it. It’s not merely painful swollen joints, it’s the constant fatigue, nausea, general feeling of ill health all the time not to mention the effect all of this has on our mental health. I still need to get my head around it all as I feel angry about it and haven’t accepted it.

frogmorton

@Rj14

You've got it.

That's the difference between inflammatory arthritises and osteoarthritis for me. You can feel exhausted with OA due to pain, lack of sleep etc, but with the inflammatory type you are actually ill. High temperature almost fluey etc.

Feeling angry is quite normal too you know as is resentful and in some cases (where it lets up for a bit) denial. Then there's depression to add to the mix. I sat in the wallow pit for a while before hauling myself out with the help of people here.

Anyway I'll shut up now you take care and keep talking that's the main thing ((()))

Toni x

Jane68

Hi Ellen,

Yes it's really tough accepting the diagnosis isn't it. I struggle with it still after last year's diagnosis and think that because I dont look any different, some friends don't realise how much it affects me.

I'm sorry you've found the medication hard. I was told that people have to try 2 different types before a biologic is considered. Can you push for these?

Sulfalazine has improved things over last 4 months but I've currently got a flare up 😬.

Let us know how you get on.