Nervous for 1st appointment with rheumy!!

[Chelle82]

Well Monday is nearly here and to be blunt I am shitting a brick about it! For the last few days I have been in so much pain that I am not sleeping properly because of it! My gp has made me feel like a hypochondriac and I'm worried the rheumy will think the same! I have been in pain since April, fought with my gp to get a referral because they thought it was viral since my RA test was negative but my inflammatories were raised! Can anyone tell me what to expect on Monday I'm in the Renfrewshire area in Scotland if that helps x

[simonstones]

Hi! I don't know the service well in Scotland, but you should go to your appointment on Monday wanting to get answers! You are the expert about your own health, and know when something is wrong, so really do stress this. I always try to note down beforehand symptoms I have had, any swelling, pain, stiffness, how things have changed over the past few months. There are other types of arthritis which are 'Rheumatoid Factor negative', and so ask them questions! Explain how it's been impacting your quality of life too. I'd recommend (if you haven't done so already) taking a look at the Arthritis Research UK website, it helps explain some more things about arthritis. Really hope you get some answers, and keep pushing!

[Chelle82 in reply to simonstones]

Thank you Simon, that's helpful advice! Your right tho, I do know my own body and own capabilities and I know how much this has changed over the past 3 months! I will just see how Monday goes and hopefully I won't have a fight on my hands x

[simonstones in reply to Chelle82]

Not a problem! Fingers crossed it goes well, let us know how it goes!

[RAinK]

Hiya, I had the same problem with GPs. They said exactly the same to me, although I had less of a fight to get a referral, (possibly because an out of hours GP had suggested it was RA). And I had a real shock at my 1st rheumatology appointment when I was very quickly diagnosed as having RA because I had been told so many times it wasn't.

So, what to expect? Well I live in a totally different area, but be ready to explain what your symptoms are - it's surprising how quickly you forget the sequence of events. You will probably be asked about which joints are affected in what way; are you stiff in the morning &, if so, for how long; maybe about feeling tired & ill. If you can take someone with you that might be good as I find I can take in so much information & then forget the rest. You've already discovered the NRAS & this forum so you have good sources for more information. Good luck with your appointment, RAinK

[RAinK]

PS, the doctor will feel different joints for tenderness & swelling - if it hurts say "ouch". And you will also probably have blood tests and hand x rays done as well to check for joint damage.

[Chelle82 in reply to RAinK]

Thank you that was very helpful...also the same can only hold some info for a short time so will need to see who's available! My hands are the worst, however I also have carpal tunnel syndrome, so hoping I don't get fobbed off its that....but doesn't explain the pain in my feet and the fact I can't walk in the mornings or straighten up properly for about 30mins or more! Every morning is the same, can't remember a morning when I jumped out of bed and felt fresh as a daisy x

[RAinK in reply to Chelle82]

Nor me. And don't forget to mention the carpal syndrome as that might be RA related. I have carpal-like problems, but it is when my wrists or elbows swell up rather than separate. Good luck.

[Ali_H]

Make notes of what you want to ask.

Make notes of your symptoms.

Take someone in with you if that will help you feel more confident.

All the best

Ali

[catwoman4]

I took my daughter with me to my first appointment and she went in armed with note pad and pen which appeared to bother the rheumy nurse who said all would be explained in a hand out which I would receive later. I found it more helpful, however, reading daughter`s notes in comparison with the official handouts as they were written in easier to understand terms, also, two sets of ears are more useful, bearing in mind that on first visit there is a lot to take in. I feel sure they will soon get you on the right track and then you will start to feel better. Ask as many questions as you feel the need to, this is your appointment! Good luck

[Livingston]

Expect to have your weight, height and blood pressure checked too. They may well ask for a urine specimen.

[helixhelix]

And sometimes the docs are extra thorough, and examine all your joints so don't wear the knickers and bra you've been meaning to bin just in case......

List all your questions, but make sure you know which two or three are most important to you. And tell it how it is. So none of the "I can manage, but..." type of statements. Tell them about the very worst days.

[hatshepsut]

Hope it goes well. Take notes of anything you want to raise, and prioritised in case you don't have time for everything. Someone else to take notes of consultation can be very helpful. Make it clear if anything is painful, and as heixhelix says, tell it how it is, don't be afraid to say how your life has changed, and anything that you find difficult.

Did you know that we are launching a group in your area, the launch is on Wednesday, 16th September, at 6.30 pm, at St Stephens Church, 260 Bath st, Glasgow, G2 4HZ. If you would like to come, call Kim or Gill on 01628823524, or email [e-mail], so we can ensure adequate seating and refreshments. It's an opportunity to meet others who have the same condition, for mutual support, information and advice.

Look forward to seeing you or anyone else interested, you don't have to be an NRAS member, and it's a free meeting and supported by GG&C health board.

Good luck with your appointment. M xx

[Chelle82]

Thank you all for the advice it has been extremely helpful! I will let u all know how I get on on Monday...hopefully with some good news to report! Does anyone know if I have to stop taking my naproxen and cocodamol I have read that i do, but the thought is not impressing me x

[flow4 in reply to Chelle82]

I have been advised by others here to stop anti-inflammatories/NSAIDs for a few days beforehand because they affect/lower inflammatory markers in your blood tests. So that's your naproxen but not the cocodamol.

[Hidden]

The best advice I can give you is take a friend with you. When I had my first apointment with a rheumy I was "dumb founded and gob smacked". A friend is able to speek for you when you feel overwhelmed. A friend is also able to remember what the rheumatologist says. A friend can also remember to bring a pen and notebook.

I wish you the best

take care

Suzanne

[car-p]

Hope Monday has a good outcome for you & you get help.

I go for my first appointment on Thursday& I'm sort of looking forward to going, to get some sort of life back, but there again I'm not. I'm taking my mother in law with me for some support.

I have read the reply's & I also will be taking on some of the information.

[Chelle82 in reply to car-p]

I'll post tomorrow night about my appointment to give you some insight! I like you want my life back, I want to be able to get up

In the morning and not feel like an old women! I used to be able to bounce out of bed, full of life, now I struggle to walk... My left foot is so sore and stiff! I'm nervous about tomorrow but also glad to be finally getting something done about it! Good luck for Thursday xx

[Lorraine_NRAS]

Hi

Everyone has made lots of really good suggestions but I thought it might also help to read the NRAS article which addresses the topic of your first consultant appointment. You can read the this on this link nras.org.uk/the-patient-jou....

Good luck with the appointment. If you have any questions then please do not hesitate to call the NRAS helpline 0800 298 7650

Best wishes

Lorraine

[Chelle82]

She hasn't ruled out RA but hasn't said that it isn't...took bloods and got X-rays of hands and feet! I have to go see a nerve doctor to confirm I definitely have carpal tunnel syndrome then off to see surgeon to get my hands fixed! Feeling confused but relived something getting done about my hands! Still no further forward as to why I have pains in the rest of my joints x