Can you advise me please? It's a scary time.

Julie10

Hello everyone. I am new here and want to ask a few questions before my first rheumatology appointment. I have had what I thought was arthritis in both hands for a number of years as I have bony nodules on most fingers and they are deformed. I have managed to cope with the pain but suddenly some of my fingers have become swollen and SO painful at the middle joints. I have started having painful knees and ankles which often feel on the verge of giving way and have terrible trouble getting up from chairs after sitting for any length of time but it is my painful hands which took me along to the GP. I wake with the pain early in the morning and it stays to some degree throughout the day. If I happen to knock one of the joints, it makes me cry out. I am not a lazy person but am so so tired all the time having to nap through the day which is not me at all. I have fevers regularly and generally feel as though I could be in my 90s. Anyway, after xrays ahowed abnormality and my ESR level was raised, my GP has arranged an appointment with a Rheumatologist for me. If I take someone with me to help take note of what's said, will they have to see me being examined, weighed etc. I would feel so embarrassed as it would be a friend (my husband is unable to accompany me). It may sound trivial but I am getting anxious about this appointment - I want to get the most from it and cannot stand being in so much pain. I would rather go alone if it meant my friend could see me being examined. Do you have to strip to underwear or is it more discreet than that? I am thinking that it may turn out to be RA by the way.
I would be grateful if anyone can put my mind at rest!
Thank you, Julie.

kathbee

Hi Julie

Sorry you are in so much pain.

I have RA as well as osteo.

So far as I remember, if you take someone in to the consulting room with you it will be fine, there should be a couple of chairs near the consultants desk. When you are examined you normally go into an adjoining room with a bed/examination couch, so shouldnt be a problem for you.

Dont know anything about the weighing though as I wasnt weighed at my first consultaion, although it was a long time ago, hospitals vary and times and procedures do change .

Hope all goes well for you.

Best Wishes
Kath

elnafinn

Hi Julie

Welcome to the forum. It is good that you will be seeing a rheumatologist and I do hope this appointment goes well for you and you get some answers to your questions. You are wise to take someone with you as two people remembering what has been said is better than one and your friend may think of questions to ask that you may not, depending on how much they know of your medical history. If you have to undress for an examination I would assume you would be taken into a side room or the rheumi would have curtains to pull shut if the examination bed is in his room so I do not think you need worry about this. If you were weighed I do not know exactly where this might take place but there is no need for your friend to hear the result and you would only take shoes/coat off for that.

I hope this helps a little and I am sure others will be replying soon.

Elna x

weejean

Hi Julie

Its understandable that you are feeling very anxious. I have OA in my hands and, like yourself, if I knock my fingers on something the pain is unbearable. I dont have any advice for this as its just a case of grin and bear it for me. I can tell you that when me or my husband go for appointments, we always go together but when the examination is taking place the doctor pulls the curtain round so that you have some privacy. They also take the weight in privacy as well. I dont know if all hospitals do this but if it made you feel better then you could just say at the start of the appointment that you would like to be examined in private and they would accomodate you. I think its a good idea that your friend goes with you for support and so that if you forget something your friend will remember. Its a lot to take in at an appointment and I always tell people to have someone with them. I hope this helps a little and I wish you the best of luck with your appointment. Sending you hugs xx

skezier

Hi Julie,

Welcome from me as well and hope it will help to be here.

Your not lazy cus this bone stuff comes with fatigue built in at times and its impossible to fight as well. It wont last in its worst way for too long but for a minute you have to listen to your body and be kind to your self I think.

The hardest thing is to wait while tests and x rays etc are being done but they will get there and then start to help you.

It might help for now to keep a pain diary and take pictures of any swelling even if its on your mobile phone as a lot of the diagnosis comes from history and with the pain diary you will be able to remember all that has happened to you.

Julie here you certainly can have someone with you in the consulting room, no problem at all but they often take you into the examination room I don't know if they are allowed to come with... mind since you can have a nurse with you if you want then they should be allowed if you ask the Rumo.

Hang in there Julie and fingers crossed they will get you sorted soon. Nice to meet you Cris x

valval

welcome at my hospital can even keep shoes on for weighing so no prob always take some one with you as you never remember what they say write a list of questions you want to ask arther makes you exhausted i often have to nap about 11.30 am to get through day so you not on your own the pain is bad but when they get right meds life does improve good luck val

hileena111

Hi, Yes......I would say take someone with your....the amount of things that you can be told.......my little brain wont take it all in so my husband is there and when we go out I keep thinking of things and saying what did he say about such and such a thing. He's not the one thats having the examination/test whatever so can concentrate better than me on whats being said......
As far as weight is concerned.....in ours you can strip {dont think many do that } keep clothes on take shoes off whatever you want.....I usually slip my shoes off but thats all and its not necessary for your friend to know what the weight is. Our hospital.....the couch is usually in the consultants room but there are curtains that are pulled around while and if he's examining you.....I have oA in hips and spine mostly and a lot of the time they just want to see me walking {or trying to} and that sort of thing...i dont need to take my clothes off
Good luck....Oh yes...as well as taking someone with you...take a list with you.....when you get there you mind is likely to go blank about the things you wanted to ask
Love
Hileena

Ankyspond

Hi,

Welcome and hope you get the support and laughs from this forum like I do. Sorry to hear you are in so much pain you are not alone in that or the other symptoms you are saying like the fatigue. It will be better when you have seen the rheumy. Chris made some good points but here are my answers and tips:

Now at my hospital you would be weighed privately in another room before seeing the rheumy, if you take someone with you they can go in with you but you will be examined in private, would need to undress to underwear so can examine and see all joints.

I strongly advise you to take someone with you to help remember things and maybe ask questions if needed, also write down any questions you have, keep a body pain map (I have one I can email you if you email me your address) on it indicate where the pain is and how often, keep a diary about how you feeling etc, don't be afraid to ask questions or ask for a different explanation if you don't understand how they explain it, ask what can be done to help and if there is anything like OT, physio etc that can help.

I really hope you get on ok and we hear from you more often. Xx

Julie10

Good morning everyone. Wow! All these replies waiting for me ... it's fantastic and so welcoming! Thanks to each and every one of you for your advice. I will definitely take a friend with me on the day. I had to laugh when I read my post again - I am such a private type of person I will be red as a beetroot while I am being examined. Still, it has to be done and I feel very lucky that my GP referred me so quickly after the xray results came back. I wonder if it WILL be RA?
Anyway, thanks again to all of you for the lovely welcome ... it has made me feel much better and I wish you all a good day (it's obvious to me that lots of people on here are in more more pain than I am).
Julie x

mig

at my clinic you are weighed on your own,if you take a urine sample with you it saves going to the loo while you are there,my husband goes with me and into the doctors room as there are several chairs there,he is always welcomed by the staffbut you take anyone with you,in the consulting room there is a curtained off area for exams so you are private if you need to be examined.hope your appointment goes well ,keep us up to date .i have only been on this site a couple of months myself the people are fantastic,someone will always reply,check out the chit chat forum then you will find out what a mad lot we are.good luck.Mig

julie47

Morning Julie and welcome to the forum from me too.

I hope that your appointment goes well and I am pleased that you are taking an extra pair of ears. It can be a lot to take in and if you are like me I forget what has been said.

If you can think of any questions you may want to ask, make a list. This is because when you get in the room your (or mine does) mind goes blank.

It should be a nurse that weighs you and you are normally lead to a side room, so your friend could wait in the waiting room ans you will return to her to then wait to be called in to the rheumatologist.

Sometimes there has been a screen in our rheummy consulting rooms near the bed. If you are shy infront of your friend you could request it to be pulled round. I have undressed onlt once (to my underware) so they could look at my shoulders and spine.
Other times that I have been exanimed I have just lifted trouser legs up, wore short sleeves (best for blood tests anyway ) so they can see my arms. And they have lifted my tee shirt if they want to listen to chest.
Don't wear tights, so they can examine your feet too.

Take care
and good luck
Juliepf x

dreamdaisy

It's been so long since my first rheumatology appointments - and hideously disappointing they were too. (Long story, far too boring and I am in no mood to type it anyway!) I now go wearing a skirt, shoes I can slip on and off, Tshirt, I do a sample first thing at home, I take a list of questions/comments/thoughts and my husband. My affected joints are sacroiliacs, knees, ankles, toes, hands, wrists and shoulders (the last three are at their worst when I flare).

If you are offered meds, accept. Don't fret too much about side effects, they are not guaranteed and if they prove to be untenable then the meds can be altered. Talk to us about any fears, worries, ask us anything - DO NOT GOOGLE. We know our stuff, we will give honest (and very often contradictory answers! One man's miracle is another's poison!) and we will support you through this as best we can. Good luck and I wish you well. DD

dotty123

Hi and welcome , I am new to this but reading your post was like reading about myself. I have OA and my hands are the worst hit at the moment but I think it has spread to my knees and hip. Everyone is lovely here and full of knowledge .. I too get embarrassed about being medically examined :oops:
I can't advise at the moment as I am feeling pretty low in myself, but I am so glad I can come on here and talk to people in the same boat and even worst off.. which sometimes is a wake up call ..
xxx

Love from another knobbly knuckle lady

Should of chosen that as my forum name... knuckles lol

Julie10

Hello Mig, Julie, DD and Dottie! Thank you so much for taking the time to get in touch. It really is a great help to read through the posts on this site and, yes DD, I know what you mean about Googling! Of course I did that last week when I'd got the results and referral but I soon realised that it was just information overload. I agree that this seems to be a very well informed community (sad to say that it must come from the awful experiences you have all had) and I a m certain that this is the place for me. I keep thinking what will Ido if this turns out not to be RA ... I have got it into my head now that it is!
Best wishes to all, Julie.

tj66

Hi Julie,

I hope ur feeling slightly better after reading the responses - I can't offer anything different or new as this is fairly new to me. My appointment is on the 22nd Aug-so hopefully you can let me know what happens!

I did see an orthapeadic surgeon who was unable to help and he gave me my diagnosis of OA-I know what you mean about the embarrasment side of things-I was given a gown which I then put on with the ties at the front thinking it would save my blushes-then not only did I have to bend over in front of him, I had to pull the gown up round my waist!

What makes me feel a bit more confident is a squirt of my favourite perfume-I then think to myself well I may not be in the greatist of shape but I do smell nice.

Take care and hope it goes well - things are generally not as bad as we imagine them to be!

Tracey xxx

valval

there are 200 types of arther so it might not be time will tell but they will find meds to help you if you read all the side affects it scares you silly but most of us do not have side affects and if you do they try others good luck val

constable

Hi there

Just wanted to say a big welcome, everyone here are really lovelly and friendly, always wanting to help if needed. I have OA and I was weighed with shoes on in a big chair.

Taking someone with you is brilliant, I didn't and forgot so much that was said to me due to being very stressed.

Keep us informed on your appointment and shall look forward to seeing you posting around the forum.


Karen xx

Julie10

Thanks Tracey and Val ... I'm just going to settle myself down and wait now. I will keep checking in here when I can to read up on stuff so thanks to you all for making me feel so welcome!
And Karen, thanks to you too! Just noticed your post as I was replying. Yes this is the friendliest and most informative place to be ... I honestly can't believe how positive people are, despite the many problems they all share.
Julie x

stickywicket

Bumped up for Puschinka.