Hi All

haven't posted in awhile but read everyday. I got my first Rhumy appointment through for the 13th of March!! But my Dr contacted the hospital and I now have an appointment for the 24th of Jan at first I was relieved but now I'm trying to convince myself its all in my head...Even though I can hardly get out of bed in the morning! And the pain makes me cry I suppose I'm just scared about what they will say..I'm taking my sister with me so hopefully she'll hear anything I don't while my mind is repeating... there's nothing wrong, there's nothing wrong......

19 Replies

  • Hey good luck!

    I'm glad you got an earlier appointment. I remember crying in pain and frustration. Good idea to take someone with you.

    Hope it all goes well.

  • thanks Hector all support gratefully welcomed 😊 xx

  • Write down all you can remember about your symptoms with the dates. And any questions you want to ask.

    It's always better to know what's going on in your body so that you can do something about it.

  • I know oldtimer it's just scary but you all know that, I have to get my fight on :-) xx

  • So glad that you got an earlier appointment. And gladder that someone will hold your hand and listen for you.

    Sending hugs.


  • Thank you Jacqui hugs greatfully recieved

  • I can well understand that you don't want to know that there's anything wrong, I think we all had a struggle with accepting that we had a chronic disease. But if you are crying in pain then you do need some treatment as it probably won't go away by itself. So this apppointment is the first step to feeling better and getting your life back. Try to view it as an opportunity to get positive help, rather than thinking of the appointment as a negative thing.

  • thank you helixhelix your right I know I can't carry on like this xx

  • Hi Pinny, I am same situation with first appointment on Mon 16th and totally in mode of denial - 'but it's all in my head' - even though hands red, swollen, bent for months and agony to type/ hold things/ write, plus knee and ankle probs. Hubby coming with me but I am also worrying that since it's all going to be in my head (obviously :-) (despite the evidence) I am going to feel stupid in front of him when rheumy dismisses me........

    Glad you got sooner appointment. Will probably post after mine so let you know how it goes.

    Am scared like you - scared it will be RA - then in next moment scared they'll say they don't know what it is and I just have to live with whatever it is and stop bothering people.

    I think the denial is a part of coping so you only take it in a bit at a time

  • you could be right Blightyfivestar I'll keep an eye open for your post I hope it all goes well and you get the answers you need.

    My son would have come with me but he's only 18 and we lost his dad last Febuary so I just don't want to worry him at least if I have a name and medication he'll know I'm not going anywhere soon and he trusts his auntie to tell him the truth lol xx

  • I have that in my head too. But we know it's not true!!

    Good luck none of this is easy.

  • It seems to be a common theme bradfordjoanna :-) xx

  • Hi Pinny- take a look at the NRAS website that will give you some pointers as to what to expect at that first appointment also we have a very useful booklet called RAise it which gives you an idea of what questions to raise at clinic appointments etc. Our helpline is open Mon - Fri 9.30- 4.30 on 0800 2987650 if you need any further information or just want to talk through things after your appointment.

    Good luck and remember NRAS is here for you every step of the way.

  • Thank you Clare I will go look now it's good to know and share with others who understand :-) xx

  • Well done! I was fortunate, I was under another countries' healthcare system so was diagnosed promptly but I can imagine second-guessing yourself when you've been waiting a while to be diagnosed. I very much doubt you'll be sent away without a diagnosis, you've too much going on not to suggest you've nothing chronic going on.

    When you say you're scared what they'll say do you mean receiving your diagnosis? If so pop on here & we'll try & help explain medical terms or meds. Having your sister with you is an excellent idea, so much will be discussed it'll be hard to remember everything. Do you think it would help if she made notes for you, the more important things you need to know or remember? That way you can go over the appointment, it tends to stick if you talk about it straight after too.

    I mentioned before but it's just a reminder, a few days before your appointment it would serve you well to not take your pain relief.

    Do let us know how it goes, or if you've any more questions before just pop on, we'll do out best to answer any you may have. x

  • My sister is very good at keeping track of facts and I will ask her to make notes that is a great idea. thank you nomoreheels I will certainly ask questions rather than terrify myself reading stuff on the internet I so grateful your all here it gives you strength :-) xx

  • You're welcome. I can empathise with pain making you cry by the way. One morning in July 2008 I stood on a market corner crying my feet were so painful. I was waiting for my h to bring the car & he found me being comforted by little old Spanish ladies. That afternoon I made an appointment to see my GP, the following morning she took RF & anti-CCP bloods ...the rest is history.

  • Don't mean to sound harsh but you should be both optimistic and thankful. Some of us have had our appointments put back when you so gear yourself up and look forward to it or even cancelled altogether. Don't bury your head in the sand. The quicker you're seen, the sooner meds and plan of treatment can start. Write all your questions down on a pad. Ask them and write the answers down as they are said. Good luck with your appointment and i wish you all the best. Take care xxxx

  • thank you CloudTreeDrive13 your absolutely right I've reduced my painkillers and it's brought home just how much it hurts...I'm sick of waking up in pain and feeling exhausted...I have been keeping a diary and my sister is primed ready...I felt really guilty about having my appointment brought forward but I don't think my gp would have intervened if she didn't think I needed I'm getting my fight on...when I can keep my eyes open!!! 😊xxx

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