rheumatology appointment any advice please

carrie2222

hi to you all
was wondering if you could give me some advice as im getting quite nervous about the appointment and not sure what to say.

I am 36 ive sufered from hip pain for over 2 years which has slowly got worse i had blood tests which came back negative but had slight changes on my xray seen a rheumy then but it didnt go well as nerves got the better of me and the rheumy didnt seem interested

well anyway within the last year and a half i have now got stiffness and pain in my feet, toes and knees elbows and slight stiffness in my hands have had blood tests again they were negative, but new gp decided to refer me.

i think my nervous is caused by the times i went to see my gp told me it was different things first it was wear and tear then i was told i sprained my hips then it was it was all in my head ect, just told me to take paracetaml

sorry to be so long winded
any advice would be apreciated

Wonkylegs

HI Carrie,

well you are not alone in getting worried about appointments so don't go thinking that.

many of us go to pieces when we get into the room & everything we want to say goes out of our heads :roll:

One of the pieces of advice that is often given out on this site by so many is to write a list of your symptoms before you go, and also a list of questions you'd like answering. Sometimes it makes the docs sit up and take notice too, as they realise you are taking things seriously!

hope that helps a bit.
good luck!

Wonky
PS - when do you go for your appointment?

frogmorton

Hi carrie

we all feel nervous - we were saying so on chit chat earlier.

i dont know why but I reckon we all feel we have no right to be there :roll:

My suggestions are
!. Take someone with you to back you up and remember stuff you forget

and 2. writre a list of evrything relevant.

pain - level of apin stiffness when am/pm and for hwo long. any other symptoms like tiredness or raised temperature.


When is your apt Carrie?

Love

Toni xx

dreamdaisy

Same from me too. Take a list, put down everything that is troubling you, take a friend if you can for moral support and don't be cowed. Docs are only human and they don't know everything so don't be afraid to ask questions no matter how silly you think they are. No question is too small or silly-sounding, it shows you need information and that you are taking matters seriously. Good luck with it, keep us posted. We are a fount of all wisdom when it comes to matters such as these! Dreamdaisy

scattered

As everyone else has already said, and I can only reiterate, write everything down. Go in armed with a written list of symptoms and questions. Work systematically through the list, and bring up anything that gets missed off. Write down the answers if it helps - the doctor won't mind and you may feel more at ease. It might also help to take someone with you who can just sit and listen.

carrie2222

hi

thank you all for your advice and for making the time to reply to me youve been all very helpfull.
my appointment is next wednesday
decided to get my sister to come with me
will let you know how it goes
thank youxx

dreamdaisy

Please do, I hope it goes well. DD

barbara12

Hi
Just to say I hope things go well for you next wed,like you I get all worked up by appointments it is only natural,I am waiting for my first rheumy appointment,I got one but they cancelled.
Let us know how you get on I will read It with interest.
Barbara x

pennycrayon

Hi, I hope your appointment goes well. All I can say is the same as everyone else: take someone with you and make a list of any questions you have. I was so nervous on my first appointment (mainly because it was a second referral as the first rheumatologist was really bad!) so I took my Mum with me to hold my hand. Glad I did as she asked questions I hadnt even considered.

Good luck and let us know how it goes
xx

valval

hi had my third one was still nervos(can not spell) and hate going but he is lovely and the meds do help but they do like there blood tests. the others all gave you good advice so hope all goes well val

theresa4

HI Carrie
Not much to say except write it down as everyone else has said.
I wrote a A4 sheet about all the problems I was having not just which joints hurt. Its important for the rheumy to know how it is affecting your life. (even down to the inability to wear high heels anymore... I am so not over this point )

If you get choked up then you can hand the sheet to them to read. ALot of people do I burst into tears and handed mine over my rheumy was very supportive he shouted for a compassionate person to look after me :oops: it sounds awful but he meant well apparently hes not very touchy feely but the rheumy nurse who sat with me was lovely. Im RA sero-negative so dont worry bout that.
Good LUck

Theresa x

airwave

Theresa has it right, write it all down and a pain list of 1-10 and how each affects you and when.

The rheummy appointments tend to be a conveyor belt of patients each getting 3-4 minutes so get your facts right and just tell it like it is.

I know the feeling, almost waiting and hoping for a diagnosis, waiting to hear that 'yes sir you are ill' and it all becomes 'official' and treatment can start, which will be a relief, but one step at a time.

Good luck.

8) Its a grin, honest!

mairibc

good luck from me too. as everyone has said, write it all down. i make sure ive got my list when i go to see consultant. rheumy nurses are just the best, mine is great. my blood test came back negative too. dont be put off by the consultant, they do like the sound of their own voices but your voice needs to be heard too. be strong. mx

joyful164

Hi Carrie
I hope your appt goes well. I cannot add any more than what others have said.
How would you measure your pain in say 1 - 10?
You will be asked to walk.
I have Psoriatic Arthritis in my hands and feet and now in my knees and hips.
I am lucky to have a very understanding and lovely Rheumatologist. The nurses are good too.
It's good that you are taking your sister.
I was lucky to be able to take my husband, someone who lives with you and understands how you suffer.
Make sure you have written everything down, every question, it does so help. Make sure you can get referrals to podiatrist (feet), OT (Occupational therapist) who can help you with your hands.
and if necessary, if your pain is so bad, perhaps a pain clinic.

Please let us know how you get on.

Joyful

carrie2222

thank you all again for all the help from all of you
have started to make a list
will let you know how it goes
hope you are all feeling ok i mean in not too much pain
bye for now xx

skezier

Hi Carrie,

As well as a welcome to the forum I can't really ad to the advice you have had here except as well as your list jot down your symptoms (I sort of kept a dairy of pain and swellings etc) as sometimes they make their diagnosis as much from you history as much as anything cus not everything comes up in bloods.

I think its normal to feel worried and apprehension for the appointments but hopefully it will all go well and you will get some help very soon. You take care and try not to worry too much and nice to meet you. Cris x

carola

Hi Carrie

When I go to the Rheumy I write all my symptoms down and when I get them.

I also get copies from my GP of all my blood tests etc as the first time I went they had not forwarded them to my Rheumy so a total waste of time!

Good luck and much support.
Carol

carrie2222

hi again
had my appointment yesterday the rheumy was really nice, had blood tests and xrays on my feet, hands lower spine and hips also waiting for an appointment for a mri with contrast dye and having a i think its called this an ultrasound on my hips and will be seeing rheumy end of july with a hip surgeon im not too sure why, rheumy says hes ruling out different things says its not Fibromyalgia not sure what it is, but doesnt sound nice.
will let you know how it goes on my next appointment
Hope youre all ok
Like to thank you all for your help and kind words and advice
thanks again
carrie

dreamdaisy

Ultrasounds are very straighforward, no pain involved at all. They just spread a cold gel over the area to scan then pass a thingy over it - no idea what its name is! You can then see a grainy black and white picture of your innards on the screen. Let's hope that it all comes together with a diagnosis so you know what to do next. Glad it went well. DD