First appt with the Rheumy Nurse

Hi all. Hope you are all doing ok. I have my first appointment with the Rheumy Nurse today since being diagnosed 4 weeks ago. Feeling a bit anxious and apprehensive as not sure what to expect. I have written down lots of questions to ask her and have had tons of grief off my family to ensure that I tell her how this is affecting me. This is mainly due to the fact that I don't appear to have gotten any better since starting on a course of steroids and sulphasalazine. As well meaning as they are, I don't want to go in there like a hypochondriac! Im not the best at putting across how much pain I am still in or how exhausted I feel so any tips would be greatly appreciated from anyone lol. Having read some posts on here I've found that there is always someone who is worse off than myself so I shouldn't complain and feel grateful and hopeful that my condition can be managed in time. I hope you all have a good day x

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  • Hi Tina---- oh how I remember that 1 St app feeling - scary isn't it? Is there any chance one of your family members can go with you? I always get" brain drain " at hospital apps. Glad you've written lots down--- make sure you ask everything on your list. Remember that it's YOUR body that is suffering all the pain etc--- we all suffer and cope differently to others so you might not "" be not as bad"" as other people - but this disease is still affecting YOU AND YOUR life. My mantra is """ you might not be top of your consultants priority list-- but you HAVE to make yourself TOP of your own priority list. 4 weeks is a relatively short time on meds--- I started in October and improvements are now beginning to be noticed. Maybe start the conversation by telling her that you are apprehensive --- everyone is. At my first app they took bloods then asked me to tell them how I felt-- joint wise and in my general well bring. Then produce your list. Deep beaths, good luck and let us know how you get on x

  • Thanks jacki08. Glad to know it's normal to feel apprehensive. I am taking my Daughter with me who is 23. Im sure if I forget anything she will let me know lol. Will keep you posted x

  • Glad you've written down the questions. If someone is going with you, it's helpful for them to take short notes, if you're on your own jot down wee bullet points.

    It's really important that you tell it how it is, so that you get the most appropriate help Might be worth jotting down how it's affecting your daily life, any particular difficulties that you have, to go with your questions. It's not whingeing, they need to have a clear picture. If you don't understand anything, ask!

    Just remember that they're there to help. Ask if there is a helpline available, if you need help or advice later on.

    Good luck, hope it all goes well. M x

  • Thanks for your kind words. My 23 year old Daughter is coming with me for support. I feel that people don't realise how much this affects our daily lives unless you experience it or live with it every day and my family certainly see that so I will be honest and open today. Will let you know how I get on x

  • Its probably early days for the medication to have had much of an effect which is very hard to understand for ourselves let alone our loved ones. It can take time to find the right medication or combination of drugs that suits you and that will bring disease under control. You need to be honest and also try to build a good relationship with the rheumy nurse as if you need help and support further down the line they are usually your first port of call - do check whether they have a helpline number you can ring for advice and the times it is available. It does help to have someone with you - my nurses know when I have problems as my husband is with me (and I usually end up in tears!! - I try not to but I get so frustrated with things), if things have been going smoothly I can usually manage on my own. Farm

  • Thanks for your kind words and support. Its so lovely to hear honesty and understanding from people who know what we are going through and I take comfort from that. X

  • Good luck today! Ask for anti-nausea medication (zofran) if they put you on methotrexate. I do the injections and still queasy for a few days after. The zofran is a life saver for me. I've only been on mtx for 2 weeks so the nausea is hopefully only temporary!! I also got one of those systemic cortisone shots in hip.... It helped make some joints, especially my feet feel some relief!! Take care! Xo

  • Thanks tonya24. Pleased that you're getting some relief at last. Am hoping to stay on same meds for now as from what I have read mtx has more side affects compared to sulphasalazine but will bear that in mind if they do decide to change in the future. Have a good day x

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