First rheumatology appointment...: Hi I have been under... - NRAS

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First rheumatology appointment...

kelliedonna profile image

Hi I have been under the weather for the last 2 and a half years , since I had major surgery for stage 1b2 cc, aches and pains in my hips , back , knees , ankles , wrists shoulders and neck,

I went to my gp because for the last 3 months I could sleep for England to, after speaking to my oncologist and having numerous pelvic area scans that came back clear for reccurance of my cancer.. it all became to much after I had been shopping with a friend and had to leave after 15 mins walking as I couldn,t take the pain in my knees and feet...

When I went for the results of my full blood count from my gp, the nurse told me all my markers are high and I have Rheumatoid Arthritis , she said I have been refered to the rheumatology department and to wait for my appointment , she told me not to let myself be in pain and to take ibuprofen as often as I needed it.. My appointment has come through today for 16th March but im in so much pain and Saturday my hands were bad and I couldn't sleep with the pain and burning... My question is.... is it usual to wait so long for an appointment and what should I be expecting to happen when I go... have put a picture of one of my hands below ... TIA Kellie

8 Replies

Hiya Kellie. Welcome to us here though I'm sorry you've had need to find us. Oh I know how it is to not to able to walk any further, I was the same. The pain was such I was weeping without really being able to control it, the tears must falling & my h had to leave me in the street & get the car. That was when I made an appointment to see my GP though my wait for diagnosis was quite different, not applicable as I was abroad at the time with different referral guidelines.

In answer to your question you initial appointment is within the NICE guidelines in that those with suspected Rheumatoid Arthritis are aimed to be seen by a Rheumy within 3 months so really it's considered an acceptable wait. However, I do appreciate it isn't in reality without some form of treatment from your GP in the interim. I would ask him or her if there is an alternative NSAID &/or pain relief for you now whilst you're waiting, if max dosing ibuprofen isn't helpful, to make things more comfortable. Your GP won't be able to do much else for you as only specialist meds, the ones your Rheumy will treat you with once further test & imaging are done to determine his or her protocol for you.

I hope this helps but if you need any more help or advice you've come to the right place! A look through the NRAS website if you haven't already could be helpful for you nras.org.uk & if you have any more questions we're here.

Hi Kellie, sorry to hear that you've become eligible to join our elite club but glad you've found us and climbed aboard :)

Re appointment -definitely follow Nomoreheels advice concerning GP visit and extra med support. Also try ringing the relevant rheumy department to try and get a cancellation appointment. I managed to bring an ophthalmologist and an orthopedist appointment forward about 6 weeks through this method - it took one phone call to each department for 3 consecutive weeks making a polite enquiry to see if they could bring my appointment forward and if not I reminded them that I was available to take a cancellation - I got 3 days notice re the orthopaedics and 6 re ophthalmologist.

Good luck

Ali

HI Kelliedonna,

Sorry to hear about your suspected RA diagnosis and I do hope that both your GP is able to give you some pain relief in the interim before you are able to see a Rheumatologist. In addition to the NRAS website which nomoreheels has already given you a link to, do consider giving the NRAS Helpline a ring on 0800 298 7650 if you have any concerns or you wish to speak to someone before your appointment.

With kind regards

Emma - NRAS

I can get a referral with in 2 weeks if I need to see someone urgent

Kellie, your poor hands. We all know what you are enduring at this time. Once you get your first appointment thing will start to happen rather quickly. Getting you on the right meds that will bring you relief and stop any progression will be a priority. As with most situations dealing with the NHS once you get into the system you will be well looked after.

There are many on here who will tell you about how important your Rheumy nurse will be to you, they are a god send, at the end of the phone to you as much as is possible.

There are those on here who will also tell you that once you have been put on the right medication it will amaze you how quickly you will find a change in your condition. Your Rheumy tea will be doing everything they can for you and they will want you to go back to a better quality of life.

As for how soon you get an appointment I think that can depend where you live. Personally I had only a few weeks to wait but I do know it can be different in other areas.

Please stay on the site and let us know how you are getting on until you get to your appointment. Also when it gets nearer the time ask about what you should do on your first appointment.....you will get loads of advice.

All the very best darlin and do keep in touch. Jean .

Thank you all for replying .... its a scary time not knowing what to expect... my gp wont give me anything stronger until I have seen the rheumatologist... the swelling has gone down a bit ,but not the pain, my shoulder and neck are burning and throbbing today and have pins and needles in my arm and hands ... I have put up with it for a while now so a few more weeks wont hurt,

I just hate not being able to do the most normal things , I have stopped shopping on my own as I had to get a taxi home halfway through last time as my knees and feet were unbelievable ... Thanks again and I will let you all know how im doing... Kellie

I know you probably won't want to hear this Kellie but it's a good idea to not take anything for a couple of days before your initial appointment. Doing this will give your Rheumy accurate results for the blood & urine tests & imaging, as well as a good indication of your inflammation when he/she examines you. My GP suggested this & although it wasn't pleasant it did give good baseline results for my Consultant to work from.

Do try not to push yourself too hard, rest whenever possible. It's an awful time just now for you I know but the more you can help yourself the easier it will be to cope. If you need us you know where we are. :)

Hi Kellie,

Just to say NomoreHeels is, in my opinion, right about allowing your rheumy see it how it is for you. He or she can choose to give you a one off steroid injection to relieve the pain etc whilst you wait for your RA meds to 'kick' in (that's what happened for me in September and it really helped).

You are at the beginning of what can be a difficult journey so try to be gentle with your self and allow others to support you in little ways. Feel free to keep coming back to this site for support and I found searching through the Topics area listed on the right of this web page useful regarding finding info about meds etc.

Most of us find that there is an 'emotional' side to having RA and some speak to therapists/counsellors, use the NRAS helpline, do meditation and/or use extra support offered from friends and family to help with emotionally difficult days/times.

Things definitely 'shift' when diagnosed with RA (or any other long term condition) but there are also small opportunities and delights to be had with the new perspective the condition forces upon one - many find strength enjoying life in a more 'micro' way than previously - there's some great photos re gardens & pets added to some post - for the first time in my life I'm enjoying doing some sketching. Undoubtedly you will find your own path through this and a lot of us here will love to hear about what new delights you discover a long the way :)

I found that once I had been to my first rheumy appointment that it helped my to write down any information re my symptoms and also any questions I wanted to ask. I then used the notes to be a proactive patient during my consultations - it helped me not to feel so helpless and at the mercy of my condition.

All the best

Ali

Ps I found a NRAS support group to attend - it's a bit of a treck for me to get there and I've only made 2 meetings but I've found it really helpful/reassuring to spend some social time with others with RA

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