Rhumatologist appointment number 1

AnnB

Hello

I've seen that there has already been a few questions like this already on here but I wanted to share my 'story' first. I suffer from horrendous knee and elbow pain. It's strange, if I sit down too much it gets worse, if I stand up too much it hurts, I can't cross my legs, my knees click every single time I bend them and that itself hurts. My pain rates from moderate to severe and I am in pain about 65% of the time. My elbows will lock, and it is the worst feeling in the world unlocking them (I just shudder thinking about it). I've been having these symptoms now for over a year, a month or so before my 17th birthday it all started and I was 18 a week ago. Since it started I've been on at the doctors to sort it out, I've had blood tests that are all clear and I was put on a course of ibuprofen to see if that would clear it and it didn't work so now my doctor has referred me to the Rhumatologist. Sometimes I feel no pain at all, and I think - oh maybe it's gone away, but it always comes back. I hate it. I love to be active and doing everything, but now I feel like I'm complaining about it to my friends all the time and they get sick of it, but they don't know what it's like. My symptoms don't match fibromyalgia, I don't have sensitivity when my joints are touched. I'm worried that I am going to go to this appointment and not get an answer, and I'm going to be told it's all in my head and I will be stuck feeling like this forever. I was also wondering what to expect at my first rhumatologist appointment, which is one month away.

I know this is an arthritis forum, and I don't have that (yet, we don't know what I have) but I understand that most, if not all of you will have been through what I'm going through so will be able to help me. Thanks in advance

bubbadog

Have you got a date for your Rhumatologist appointment? What you need to do is write down all the questions you want to ask the consultant so you don't forget to ask them anything. I hope you will get some good pain relief and that you will get a solid answer of what is going on and how to manage it. You are welcome to ask any questions you have and we will try and support you where we can.

stickywicket

I'm just popping in here to add my own welcome, AnnB. I don't really think I can be of much help other than to say your GP sounds very much on the ball so, if you do have some form of arthritis, it will be picked up quickly and that's important.

I've had RA for many years. i have it in most joints. I do remember very painful elbows though mine have been OK for some years now. My knees have done the locking thing. I found if I pushed the other knee hard against the locked one it would slowly 'unlock'.

I'm afraid your friends are unlikely to understand. I don't think any of us understands another's illness or disease until we have been through it ourselves. That's tough when you're still in your teens and wanting to do what all your friends are doing. I hope you may soon be able to again.

I think what you really need is expert help and it sounds as if you are getting it. That's good. We can support and share stories but we can't diagnose

AnnB

I do indeed have a date for my first appointment and it's at the end of September. I was offered one in two weeks but I am on holiday ( which is going to be 'fun') so I'm lucky to have got my appointment soon. I heard people can wait a while. I was referred about 3 weeks ago.

With my elbows when they lock, I will have to try and straighten it out slowly and it is really painful. And it's so sudden too- I just suddenly stop what I'm doing and when I'm around people they seem to think I'm going crazy or something!

I wish I just had one person around me that understands how I feel all the time. It would make thinks easier for me, alas, there's no one.

dreamdaisy

Hello, it's nice to meet you and I hope we will be able to help with information and support. It is good that you have the chance of an appointment so soon, I hope you are keeping notes of what is happening, pain levels, tiredness levels, what helps or hinders so that the rheumatologist will have a better all-round picture of you and how you are being affected.

It may be worth your googling The Spoon Theory and There's a Gorilla in my House - they both offer clear explanations of living with some form of an on-going illness. Those around you won't be clued up but if you show them these articles it may help them to be a little more understanding. I wish you well. DD

AnnB

I just googled both of those and I relate so well I defiantly think I will show them to my friends, maybe they will understand just a little of what I feel everyday. I've been keeping note of my symptoms and what makes them better or worse and when it happens and stuff. I'm worried that if I don't write it down I will forget something.

I'm glad I was given an appointment so soon, I was expecting to be waiting a lot longer. It will be nice to maybe have an answer but I am quite nervous.

barbara12

Hello AnnB
Sorry I cant offer any advice...apart from there are so many on here that have had a long haul to there diagnosis...
I do wish you well at your appointment and don't forget to list any questions you have..good luck and please let us know how you get on x

Toots

Hi Ann
I'm so sorry to hear you're suffering so much. I can't offer anything other than virtual hugs - I hope you manage to enjoy your holiday as much as possible x

AnnB

Thanks a lot for the support, I will let you know how it all goes. I'm going away with the Army Cadets, which is a youth organisation. We're expected to do all sorts of things from rock climbing to expeditions and stuff like that. By not having a diagnosis yet I therefore have no 'excuse' to sit out if I need to. Hopefully they will understand, doubt it though!

Thanks again to the well wishing, it really means a lot

stickywicket

That doesn't sound good. Even if you are able to do it all maybe you shouldn't. Why not ask your GP for his/her opinion? You could ask for a note to that effect if it's deemed not recommended.

AnnB

I go tomorrow (well today technically ) afternoon. So I don't have time, however I am going to explain the situation to the person in charge. If I can't do it, then that's it. I mean they can't force me to at the end of the day. I'm going to try and ignor it, maybe I will have a day or two feeling ok?

Toots

I really hope you can enjoy some of your trip Ann, but stick to your guns and don't do anything that you don't want to/feel unable to do! x