First appt query

becslb

Hi, I am new to the forum and wondered if i could ask a question? My first consultant appt is next week - besides history and examination of affected joints, what else do they do at that appointment?

I first had "problems" 2 years ago with painful achey stiff hands which after about 3 weeks went away. Nothing else till a year later and since then i have had flare ups which either settled with no treatment or after a course of anti-imflammatories and painkillers. The flare ups gradually worsened with anti-inflammatories ad painrelief needed each time and since July, I have had one long flare-up, some days are worse than others pain-wise and some days I am so exhausted that I can't decide whether to sleep or cry. I have 2 young school age children so have to do school run, activity taxi-ing and other mum stuff. First blood tests were negative and xray showed no joint changes. I have just had bloods taken again and am waiting for those results. There is a strong family history of RA including my Mum (diagnosed at 60) and my Mum's sister (diagnosed in her early 20's).

I am glad that my appt is very close now as I would really like a diagnosis (though I am aware that doesn't always happen!) and advice on how to move forward with treating/managing whatever it is I have.

If anyone has any advice about how to approach my first consultant appt, I would be very grateful.

Thanks, Becs x

dreamdaisy

Hello, it's nice to meet you though I am sad you have had to find us. It has been so long since my first appointment I cannot really remember but the advice we usually offer is along the following lines: make some notes about what has been happening, for how long, what helps and what worsens, the family background is important too, the rheumatologist may well ask for further Xrays and blood tests, but above all answer everything honestly and if you cry don't be ashamed of the tears. Is someone able to go with you? Do you have an OH? Moral support is very important, and often the one with you picks up on things that you might miss (I always take my husband with me and he remembers stuff I don't. :oops: ) I have to dash as the plumber is coming to mend our boiler! I will be back later. DD

stickywicket

Hi there. I think DD's covered most things (She usually does) but I just wanted to say welcome from me too.

Also, Ankyspond has made out a great 'Pain Map' on which you can mark areas that hurt as it's so easy to forget when you get to an appointment, especially if that bit's not hurting at the time. She'll let you have a copy if you PM her.

I hope you feel it's a 'good appointment'. Do let's know how you get on.

Ankyspond

Hi from me,

Think the others said it all really, write question and symptoms down. Take someone with you to take it all in and ask questions if necessary. Don't expect all the answers straight away it can take some time to get a full diagnosis and get the meds right, I have been diagnosed for four years (I am 43) and still trying to get the right cocktail of meds.

As Sticky said I have a pain map which I am happy to share with you which you can fill out and take with you, if you would like a copy PM me with an email address that can accept attachements and I will send it to you.

Hope you feel better soon. xx

traluvie

Hi and welcome from me too..

I remember when i was going to my first appointment, i was very nervous as i didn't know what to expect and like you i wanted a diagnosis there and then, unfortunately the diagnosis part doesn't necessarily happen like that..
I would write all your symptoms down, and any questions you think may like answered.. It is early days, the rheumy will probably do more bloods and possibly more xrays as things can change over a year or so..
Let us know how you get on.

becslb

Thank you everyone. I will write a "history" and anything else I think I need to mention in my notepad.

I'll let you know how I get on x

Becs

dreamdaisy

Please do, and don't be afraid to ask us any questions before (or after) your apppointment: no question is too small or too silly, I can promise you that. DD

lalla

Welcome to the forum,hope all goes well at your appt, its always easier when you have a diagnosis, I felt relief to know it wasnt in my mind!Ask if they run a patient education programme, very helpful and gives lots of ideas on coping with and making the best of your life, pain management and people to ask for help ie OT , podiatrist, . Your Rheumy nurse can also be of great assistance, Good luck Take care Linda

becslb

Thank you both am writing a list of things to ask/mention next week.

Got my blood results this morning (from receptionist) and like the last set, are "normal"... was hoping for something just so I could say "see! It's not in my head!). Although I have pain, stiffness and exhaustion.. there is no visible swelling or redness of any joints which makes me feel a bit of a fraud as everyone seems to ask/look(!)

Am also worrying that my flare will settle completely (so just left with the slight stiffness I notice between flares) in time for my appt next week and then the consultant will take one look and say there is nothing wrong with you...... :roll:

Sigh!

Bec x

traluvie

Becs my bloods were normal, no visible swelling when i saw rheumy either..You just need to stress to them how you are feeling and reel of your list of symptoms, hopefully he will do further tests and investigate more, mine did.. so don't give up..xxx

CJHunter

becslb wrote:

Thank you both am writing a list of things to ask/mention next week.

Got my blood results this morning (from receptionist) and like the last set, are "normal"... was hoping for something just so I could say "see! It's not in my head!). Although I have pain, stiffness and exhaustion.. there is no visible swelling or redness of any joints which makes me feel a bit of a fraud as everyone seems to ask/look(!)

Am also worrying that my flare will settle completely (so just left with the slight stiffness I notice between flares) in time for my appt next week and then the consultant will take one look and say there is nothing wrong with you...... :roll:

Sigh!

Bec x

Hi, very sorry you had to find us too.
I was diagnosed with P.A 12yrs ago and have had joint pain for over 20yrs (am 38)
My new consultant has said that as my bloods are 'normal' and i have no visible signs of swelling, redness he has decided I have a chronic widespread pain condition which is not arthritic and has discharged me (yesterday) as he cannot do anything for me :roll:
I do have chronic widespread pain, stiffness, sporadic swelling of joints, and massive fatigue problem. As this consult doesnt want to do anything further I am being refered elsewhere in the country by my G.P ( who is lovely) to get a diagnosis.
The only reason i want a diagnosis is to know what beast i am fighting. You know the pain and problems you are suffering. Dont let others pre judge you. You also know your body and something is going on so be strong.

Take care.
clare xx

becslb

Clare, that sounds awful! I am so glad that your GP is referring you to see someone else - I hope you get a proper diagnosis soon xx

becslb

Just wanted to update - I had my appt yesterday with the consultant and have come home not really sure what is going on...

Consultant said she is positive that I don't have RA and that that was a good thing. To be absolutely sure, I had another blood test yesterday and she is sending me to have an ultrasound on my hands. She then said that it isn't a skeletal problem as I am too young and that is could be muscular as I have tiny delicate wrists and that if the other tests are negative, then she would send me for physio.

I am feeling rather confused and worried and dare I say almost dismissed. She asked me how I cope when I was exhausted so I said I didn't.. that I had to keep going as I have youngish children and they still need me doing stuff for them and I felt that she thinks I am weakling that doesn't do anything... In reality, I used to horse ride and worked with horses for many years, I have had a break from that for quite some time now but have 2 allotments and up until this year, did all the digging etc completely by myself.. It's only this year that I have had to have help and in fact, have done very little as I just haven't been able to cope..

Am seeing the GP tomorrow so trying to figure out what to ask her.. This "muscular" problem - does she mean fibro?

Have had a very painful night with very little sleep.. was sat crying at 2am with the pain... so today I feel very tired as well as achey painful joints.. struggling on as I don't really know what else to do...

Any thoughts of how I can move on from this point?

Bec x