Hi everyone, new here.: Hi everyone, First visit to... - NRAS

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Hi everyone, new here.

MrsBones123 profile image
19 Replies

Hi everyone,

First visit to the rheumy three weeks ago after my fingers and toes started being swollen and painful. Prior to this had had various odd painful/stiff joints that would hurt for a few days then mysteriously go back to normal. GP wasn't concerned, but I felt generally unwell/tired.

When fingers/toes started he sent me for b/test which came back Rf positive and then rheumy appt.

Early days, she said it was 'a type of inflammatory arthritis' but not sure which type yet. Next rheumy appointment in a month for a DX from results of more b/tests, xrays.

Bit stunned really but trying to go with the flow as they say :)

Consultant gave me a depo steroid shot and said how I responded to it would help her with the DX. It helped a lot! I felt about 20 years younger the day after, lol No pain anywhere!

It seems to be wearing off a bit now as index finger (worst one) started stiffening up again, and new pain in my jaw joints.

This is turning into a bit of an essay :)

Just wanted to say hi, and glad I found the forum. Prior to that I spent a few days googling and totally freaked myself out. Calmed down a bit once I found humans :)

Learning so much from everyone else's posts.

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MrsBones123 profile image
MrsBones123
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19 Replies
Caspiana profile image
Caspiana

Hello. It can be very scary having pain that the doctors cannot quite explain. I'm so glad you're getting it checked out though. It will take a bit of time for a firm diagnosis (mine took six months) but hang in there. You will be okay.

Hope you're having a good day.

Cas xx🌸

MrsBones123 profile image
MrsBones123 in reply to Caspiana

Thanks Cas for your welcome. Takes a while doesn't it, and of course we want them to 'sort us out' asap :)

Hope you are having a good day too xx

helixhelix profile image
helixhelix

Dr Google can be a bit scary. Not only is there stuff on there that's out of date (modern treatments are so much better than pre-1970's), but there are also some dodgy websites. Try to stick to reputable ones like NHS Choices, or NRAS.org.uk, or ARUK.

Do also bear in mind that sites like this are not entirely representative as people here are more likely to be those who have a "difficult" inflammatory arthritis. Those of us who have a manageable RA, which is the most common experience, don't post that often. What would I say? "I'm having another good day?" which is not a lot of help if you're having a crap one!

Take it one step at a time, and hang on to the fact that the steroid jab made you feel better - and that's how you'll feel once you get a long term treatment sorted.

MrsBones123 profile image
MrsBones123 in reply to helixhelix

Thanks helixhelix that's good advice. And reassuring re feeling better once the long term treatment is sorted out.

Am staying well away from Dr Google. Reading positive posts helps a lot. The stress/RD connection I suppose.

Crusee profile image
Crusee

Hi,hello and welcome.

My initial diagnosis of RA/RD took a while to be confirmed and being the impatient person that I am then true to character I spent ages on Google to get answers of my own.That was a really big mistake.I had misinterpreted a lot of the information that I had read and driven myself to the point of distraction with an overactive imagination.Wait until your consultant has a diagnosis and ask him the questions that you are seeking the answers to.

The steroid jabs are great.I have had a few myself,but yes you can certainly feel the difference when they begin to lose their potency.I am now on a daily dose of steroids,prednisolone,as I have had adverse reactions to a number of the drugs and I feel like superwoman most days.Unfortunately my body isn't always up to doing what my mind thinks it can but I still feel like superwoman.You may have seen me in a phone box near you,spinning around in a cape and putting my knickers on over my trousers--lol!

Anyway I hope your diagnosis comes through soon and that you can then be put on a suitable treatment plan to manage your condition effectively.

In the meantime leave google alone unless it's a reputable one like helix helix has mentioned.

Good luck and hope all goes well for you.

Crusee

XX

MrsBones123 profile image
MrsBones123 in reply to Crusee

Thanks Crusee, yes overactive imagination here too ;-)

Oh that was you I saw spinning around in the phonebox was it, lol! I was surprised at the difference after the steroid shot, it reminded me of the film Cocoon where they became young again, hehe.

I am glad to hear the prednisolone is helping you so much.

xx

Kmathe26 profile image
Kmathe26

Hello! I am also waiting on a diagnosis right now. This site has been great for me for information. Hope you get on ok at your next appointment.

Kirsty 🌻

MrsBones123 profile image
MrsBones123 in reply to Kmathe26

Thank you Kirsty, we are newbies together then :) It's a learning curve isn't it! I hope you soon get your DX and meds sorted, and feeling better soon.

Xx

farm123 profile image
farm123

Have a list somewhere that you can jot any queries / questions on as you think of them. Also try and keep a record of how you feel, which joints etc (how long the steroid jab kept things at bay). Then nearer your appointment you can read through and take a list of bullet points with you to the appointment. You can guarantee a joint that has been playing up will be quiet on the day and you will forget to mention it. As helix said try and stick with NRAS, arthritis research and NHS websites for up to date info. Bear in mind there is a lot a variation with this disease and there is no one size fits all in terms of medication, severity, diet or mobility. I would keep a notebook or spreadsheet with dates of starting meds, whether they worked, any side effects etc as over time it is hard to remember what you have had and if you have a large hospital file it is hard to find as years go on. Farm

MrsBones123 profile image
MrsBones123 in reply to farm123

Thanks Farm, that's a good idea to keep a notebook for questions. I think of them then of course forget what they were. Plus get a bit flustered trying to take it all in when at the hospital.

Yes joints flare up and then forgotten once they calm down, will keep a note of them plus meds too. Will have to get a bit more organised with it being a long term thing, it will help a lot to keep track of things.

Xx

Snooze-Master profile image
Snooze-Master

Welcome ;-) I got sorely peter pointers too (amongst other soreleys ;-)

MrsBones123 profile image
MrsBones123 in reply to Snooze-Master

Thanks for your welcome Snooze master. Sorelys we have 'em ;-)

Take care xx

Welcome MrsBones123. I think everyone knows how confused and scared you are at your diagnosis. Take a deep breath and relax. You are joining a friendly knowledgeable forum.

I wish you well

Sue

MrsBones123 profile image
MrsBones123 in reply to

Yes it is a bit daunting at first isn't it. I feel a bit better about it now though knowing I have somewhere to come to get a bit of advice. Thanks for your welcome :-)

xx

oldtimer profile image
oldtimer

Stick to reading the NRAS site or Arthritis Research - both contain balanced information. And welcome.

MrsBones123 profile image
MrsBones123 in reply to oldtimer

The NRAS website looks helpful, will have a look at the Arthritis research one.

Thanks! Xx

MrsBones123 profile image
MrsBones123

Hello Kai thanks for your welcome. I like your cat picture. A Catlady here too :)

Not so fretful today, thanks to this forum and humans here :-)

Hope you are having a good day xx

MrsBones123 profile image
MrsBones123

Oh lovely! lol! Just spotted the cats in art link. They're brilliant aren't they. Of course the cats are the stars ;-)

I am catless at the moment, after many cat-mom years, but a neighbours cat and two spaniels are keeping an eye on me ;-)

I hope you are getting plenty of furry cuddles today xx :-)

flow4 profile image
flow4

Hello MrsB, and welcome. :) I'm a few months ahead of you: I was diagnosed with "some sort of inflammatory arthritis" in Nov, revised to psoriatic arthritis in Feb. I've been on DMARDs since then, and feel massively better than I have done for years. :) I was pretty bad when I was diagnosed - funnily enough, I didn't realise quite HOW bad until some of the symptoms started to go away - so some problems remain, but everything is much better, and I'm feeling positive and hopeful. :) Good luck to you too - I hope they sort you out soon :)

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