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Rheumatology Appointment

After a long wait I am due to have my first appointment with a rheumatologist this Thursday. I am not sure what to expect and I am worried about not being able to describe the pain properly. I get stiffness and pain in my fingers and toes and pain without stiffness at the back of my ankles, elbows and wrists which is there all the time but varies in severity. Occasionally I get pain in my back, buttocks, shoulders, ribs, knees and thighs but it comes and goes. Apart from one arm which is swollen there is no other swelling or redness. What can I expect to happen at my appointment? Any thoughts or advise would be greatly appreciated.

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Don't worry. They are used to patients being unsure about what their symptoms are at first. They will examine your joints and dexterity for swelling and your range of movement and also do your weight, blood pressure, urine (usually) and blood tests. That is normal procedure. They will ask re your general health and any other conditions and medication you take and advise you on pain relief. RA meds won't normally be prescribed there until blood results etc are confirmed. Pain relief should be advised. Very important .. pain relief ... and also maybe you could ask about physiotherapy if you are finding movement difficult. Physio and hydro saved me in the early days. They may arrange a date for you for a scan of your joints (nothing scary or dangerous) to see where any "hot spots" of arthritis are. They couldn't find RA in my blood for months but the isotope bone scan found several hot spots which corresponded to my worse pain and stiffness even when I didn't have redness and swelling at first. Then RA showed in my blood a few months after. If you feel a little nervous you could take a friend/partner etc. They are used to patients taking some support in this way. Good luck.

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That's very helpful information, Neonkitty. It helps to know a little of what to expect and I will make sure I take a list of all my medication as I am on quite a bit for other health conditions. Thanks for your help.

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Hi Angedogs, good luck at your appointment I would be interested to hear how you get on.

I’m in a similar situation to you but still waiting for an appointment in Essex. How long have you had to wait.?

I’ve been backwards and forwards to the Gp for more than two years now, different GP every time, and have been diagnosed with menopausal symptoms, age, stress and depression and been on and off iron tablets for anemia the whole time. So tired of it all now. Current GP diagnosed me with severe Vit D deficiency and possibly autoimmune disease due to pain, swelling and fatigue as you describe. Left a job I love 4 weeks ago because I couldn’t cope anymore and they were unable to let me go part time. Am beginning to feel depressed now - just want to know if there is anything wrong and get on with it - whatever it may be don’t you. Finding this site has been a godsend.

I have just drawn a body map and recoded all my symptoms on that to hand over when I see someone- I look at it and feel a complete hypochondriac but just want to make sure I get it all down.

Sorry for rambling! Best of luck to you.

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Hi SJC61

Thanks for telling me your story. I was referred in January but it feels like I have been waiting a lot longer. Like you, I have seen various GPs over almost 3 years and they couldn't say what was wrong. It is made more difficult because of various other health conditions including hypothyroidism, liver disease and heart failure. I was also very low on Vitamin D3 and one doctor made the mistake of giving me a very low dose for just a couple of months so within a few months it was even worse and luckily a more knowledgeable GP knew to give me a loading dose of 300,000 over six weeks and then a maintenance dose for life. Last time it was tested, in February, it was still in the normal range but had dropped from 230 down to 139 so it could be even lower now. I am not anaemic but my folate is very low. I am due to see my GP about it and other problems tomorrow.

Have you had a thyroid function test? Some of the symptoms such as fatigue and aches, pains and Vit D3 deficiency can be linked to an underactive thyroid. I have Hashimoto's which is an autoimmune disease and I suspect I may have other autoimmune diseases as well.

I am not surprised you are starting to feel depressed. I have always been against antidepressants but I had no other option than to go on them 5 weeks ago and I am still waiting to see if they are going to help.

Doing a body map is an excellent idea and don't feel like a hypochondriac, you are in pain and need to get it sorted out.

Do you know how long you may have to wait? I was told by TRAQS to allow six weeks and to contact Rheumatology if I didn't hear within that time but when I did, they told me they were very busy and to wait another 4 weeks. I phoned them again 4 weeks ago and they said unless my GP was willing to refer me as "urgent" I could be in for quite a long wait still. I was very surprised to get a letter 2 weeks later with an appointment for this week which makes me wonder if they had a cancellation.

It's my turn to apologise for rambling. I am a terrible rambler. I will let you know how I get on and thanks again for sharing. Wishing you luck with your appointment too.

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If you look to the right hand side of your screen there should be a list of related posts that are all about first appointments. Or use the search box top right. We've all been through this first appointment so we understand the apprehension!

My top tip is best underwear and clothes you can get out of easily just in case they do want to examine you all over!

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Thanks helixhelix. I have found quite a few first appointment posts and some very helpful information. I am still feeling apprehensive but more so in case they can't make a diagnosis.

I will be sure to sort out my best undies and see if I can find a skirt to wear as it will be easier to take off than my usual jeans. Your advise is much appreciated.

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Hi you do have a lot of helpfull information.i would take a urine sample from that morning you can get tube at surgery .they always seem to ask me when I get there .save the hassle when you get there

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Good idea Ajay575. I will get a tube from my surgery tomorrow. Thanks for that.

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Hi I went for my first appointment three weeks ago where she read my GP’s notes asked me a few questions, looked at my hands and feet (which were the mainproblem areas) and straight away diagnosed RA I was really shocked hadn’t expected that as GP told me that I hadn’t. I was then sent for more blood tests and X-rays of my feet, hands and chest. She gave me a booklet to read on the subject and put me in a 10 week dose of steroids whilst the other medication she prescribed has chance to get working and I can honestly say I feel like a new woman! I didn’t realise how much I ached , how tired I had been feeling, how stiff, swollen, etc, etc , until within 24 hours it just lifted as if someone had flicked a switch. It will be interesting to hear what the bloods and X-rays say when I get my follow up appointment in about 8 weeks time. Good luck.

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Hi

Thanks. The way the steroids made such a difference sounds amazing. I keep telling myself it can't be RA because there is no redness and only my arms are swollen. With me it is mainly the arms, hands and feet although other areas ache as well but not as bad. My appointment is at 11.15 today and I am feeling a bit anxious but also eager to see what they say. Good luck with your follow up.

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Show them your post? It is written down then x

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Good idea. Thanks.

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Hi lovely .

You explained your pains beautifully .in the above. So nothing to worry about.just explain in the same way.

They will ask you how bad yor pain is from 0-100

100 being worse.and how long it takes in the morning for your stiffness to ease.

They will look at your joints. And document any pain in fingers wrist etc .

Please don.t worry .this is a good first step.and they are there to help you.

Good luck .kathy x

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Thanks Kathy. The reason I am worried is because the aches are hard to explain. There is stiffness in my fingers but sometimes it is worse in the mornings and other times it is there all day at the same level which makes it a bit contradictory especially for RA but I suppose they will know what to ask and I will just answer it as best as I can.

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Yes love and they will understand this.we all have the same problem. But we are all different.

Everyone reading this knows what you mean by the aches are hard to explain. And no morning and no day is the same.and the stiffness can wear off after a few hours .but as soon as i stand up after sitting awhile it can feel as bad as it does first thing in the morning .

So don.t worry .just tell them as it is .its your body .and know one can feel your pain .only you.

Bless you .don.t worry .relax . Gentle hugs .kathy x

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