First Rheumatology appointment in the morning :/ scared!!

[Jillybean1983]

Well I'm 29 years old with a lovely husband and 2 young boys age 5 & 3 & half, I was referred from my GP just 4 weeks ago after numerous appointments with painful, stiff, swollen hands which now seems to have moved into my wrists also! X-rays of hands came back clear (great) RF came back at 640 titre and Anti CCP 0.6 ELISA. My appointment is tomorrow and feeling really nervous at the thought that no one is going to believe the pain I have, I have now what seem to be Nodules on both my ankles and 1 knuckle, i don't have much swelling so I feel I'm going to be fobbed off. I do have pictures of my hands when swollen & red and a little history of onset symptoms but reading some blogs etc that their Rheumatologist is quite rude/no proper assessment is making me feel sick I am 4 days smoke free now so I hope this helps me

[dimple75]

Hi there. Firstly, thank you for sharing your story and secondly congratulations for being strong and doing something about your smoking. Its a win win, you'll same money and will be good for your health, its not easy but hey you've done the hardest part so far, you survived day 1.

Don't worry too much about your appnt and its difficult as some of us have had terrible experiences but not all doctors are the same. You are very lucky that you have an appnt right away after 4 weeks of referral. I had to wait a lot longer than that and I remember the waiting list to see dermatologist was about the same time...18 months my case only got speed up coz of my ED presentation.

My suggestion, you write everything down.All your worries, questions, right them down so you won't forget. Doctors just don't judge an area due to swelling, there's other factors to consider and you will have an assessment chart to fill up (if they have the same like what we have here in darwin). They check your pain level, range of movements, limitations, your blood test and importantly how it is affecting you mentally.

Pain is subjective, everyone feel pain differently and just because we don't see a gaping wound or broken limb it means that the person is not in pain or they are just imagining it.

So write everything down and do not worry too much. Take care and good luck.Lizaxxx

[helixhelix]

Really don't worry, as most rheumy's are great we just only tend to post when things go wrong. Mine is lovely, and was great right from the start. Dimple is right, swelling is not the only thing they'll look at so follow her advice and you'll be fine. Just don't get your expectations up too high, as sometimes they'll want you to have X-rays and more blood tests before they decide on the treatment, so it may not all happen tomorrow. And well done for giving up smoking - the first days are the worst and it'll get easier from now on. I don't even think about it anymore! Polly

[sylvi]

You will be fine,just don't let them fob you off. Tell it like it is and as has been said write everything down tonight. Take your photos with you as well and don't let them ignore them. Tell them how it affects your life each day and at night. Tell them how it affects you when you pick up your children as well. If you can take your hubby with you,you will find that most helpful as you won't take in all they say to you. If you can't take hubby get your mum or dad or someone who will be on your side. My hubby comes with me,yes i know he is retired now,but when he was at work he worked his shifts out to come with me.

I will be thinking of you tomorrow and i wish you luck and look forward to hearing how you get on.xxxx

[miss]

Hi can only agree with the others. Write it all down and take your photos with you. A very large well done for quitting the cigs . Its all full been there and done it. Ten years now !!!! and my partner still smokes out side only.

Will be thinking of you tomorrow good luck xx

[Jillybean1983]

Thank you for all taking the time to reply with your great advice and well wishes, my stomach is still in knots, my hubby will be coming with me but we also have to take the kids ( half term ) and no one to look after them got lots of questions wrote down and taking a notepad and pen to jot things down cos ill probably forget! Ill post tomorrow hopefully with a different view! Thanks again it's nice to have a response from people who know xxx

[shirlthegirl in reply to Jillybean1983]

I hope this helps you to, Take care xx nras.org.uk/about_rheumatoi...

[shirlthegirl]

Well done for giving up smoking, i have been smoke free now for 12 weeks, it hasn't been easy but i suppose you have to think of anything and everything that will help you get though, and improve your condition, As long as i am doing all the right things to help me i know that there is nothing that anyone can say, if you know what i mean, i am also doing regular physio to, I have improved but have a long way to go still, please don't worry about your appointment as not all rheumatologist are the same, i have had a great medical team around me, also it is great that your husband is going with you as you have a lot to take in, but i was the same when i had my first appointment,let us know how you get on xxx

[Nildesperandum]

Hello

This is my first post on here. I am 48 and I have just been referred by my GP who says my anti CCP test was strongly positive and have really bad hands and feet constantly and over last few months have had flare ups in both knees, both shoulders, my ankles and my neck. I feel like its taken me too long to get my GP to diagnose it and I am really worried that I will have to go through that whole process again when I see the specialist so I know exactly how you feel. Now I know what it is I feel like I am eager to get some treatment started right away. Please let us know how you get on tomorrow. Hopefully you will be able to put my mind at rest.

[shirlthegirl in reply to Nildesperandum]

Hiya i am really sorry that you have had to join this site, I to was diagnosed in September 2012 by my GP but was complaining about my shoulders and knees from June, from the time i was diagnosed to the time i saw the rheumy in the November i also suffered in many joints, all i am going to say is don't be to disappointed if you have to wait a while to see the rheumy, as people have said they had to wait longer then 4 weeks, Just make sure you are getting the correct pain killers that are right for you, I found this very help full when i first got diagnosed to understand what to expect, i hope it helps you Take Care xx

nras.org.uk/about_rheumatoi...

[lynn-bel]

Hi

I take it you have stopped smoking which is good and don't worry about the consultant visit =- write down all questiosn you have so you dont forget anything. They arent all rude, my experience is mixed, but have always found the appts i have to be a bit rushed. BUT, I must admit I dont insist on making them asnwer all my questions, so be sure to say up front that you have a few questions. I think many of them are overworked which is no excuse as we do need the visits and questions answered. See what your consultant is like, if you have problems, see if you can get someone different next time. In some hospitals it's possible to switch consultants, some not.

PLEASE don't get stressed over the visit, make sure you are happy with the info. given.

When I was diagnosed my pain was terrible. Once I was on the medication that suits me (methotrexate) and it "kicked in" I felt much better. My painkiller is paracetemol and also Naproxen for inflammation and pain. But we are all different so what suits me may not suit you. Try different painkillers and stick with what works.

My hands were bad and the hospital physio gave me a hot wax bath which was lovely. I also was given exercises to do every day to keep the limbs, joints etc. mobile and supple.

Don't worry too much about it; keep in touch with this website as it really does help.

By now you prob. have had your visit so hope it went well and remember, if you arent happy with the treatment you get, speak with someone to get things changed.

Lynn x

[jeanabelle]

My heart goes out to you it really does. I'm in my 60's when I got Rheumatoid Disease I can only just imagine how you must be feeling. I was very lucky with my Rheumatologist, he is lovely and has been a huge help to me. Please come back on after your visit and let us know how you. Got on. Fingers crossed for you. X

[Jillybean1983]

Hi everyone, I have had my appointment an my consultant was lovely he did a full examination, listened to everything i said, he explained everything invoked, medication, what happens next, lots of info on RA, medication & got a rheumy nurse! I was put at ease straight away, he has started me on Methotrexate 10mg to increase over 6 weeks and weekly bloods until they settle. I've had some more X-rays on my feet as they were crunching on examination, chest X-ray and waiting for an ultrasound on my hands, I feel so much better now! Thanks for all your support its been a journey upto now xxx

[dimple75 in reply to Jillybean1983]

You are welcome. Im glad everything went well with your appointment. All the best with your journey and enjoy your week end. Lizaxxx

[Jillybean1983]

He also gave me stronger NSAID's and a little white medication & bloods book to take to all my appointments x

[mille]

Hope you feel better soon Jilly, the medications now are so much better than they were years ago. congratulations on stopping smoking you will feel much better without it. I stopped 7 years ago after almost 40 years. There is a great book by Allen Carr on how to stop smoking for anyone trying to give it up. You could probably get it from the library. I felt it helped. x