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Rheumatologist referral for potential rheumatoid arthritis- how to advocate for myself?

10 replies

Maryrdom · 10/10/2026 11:04

Hi, I have a rheumatologist referral appointment next Friday for what is looking like rheumatoid arthritis. What should I expect and how best do I advocate for myself? Is there anything in particular I should read up on beforehand? Thank you so much.

Feeling quite scared about the diagnosis. Other than the pain/fatigue, I work with my hands and also keen climber/runner.

OP posts:
BeckyAMumsnet · 10/10/2026 16:01

Just bumping your thread, @Maryrdom - best of luck.

Piggywaspushed · 10/10/2026 16:14

Hi OP. Out of interest, how did you get referred? I have classic pain and a raised RF but they won't refer me.

Kez145 · 11/10/2026 16:24

Hi. I’ve just seen your post. I’m a year since diagnosis and my rheumatology team are amazing. Your first appointment will more than likely take a few hours as you will need to see both the nurse and consultant. I had an injection, bloods and an xray. I’m still not sorted with pain management sadly as my RA is very aggressive but I know they are doing all they can to help.

winkymcwinkle · 11/10/2026 16:26

Hi OP, I have RA. Have they run any blood tests? There is a marker which can show for a lot of people with RA. However there is also sero negative RA, so the marker isn’t always present.

I was diagnosed over ten years ago now and was initially floored with the diagnosis and cried a lot! However, finding the best meds for you, adjusting life a little, and learning what you can do and how really helps over time!

The best thing is to know what you are dealing with, and then you can plan.

If you do look up online support groups etc, remember people whose treatment is working don’t tend to need them, so take everything with a pinch of salt.

Thinking of you!

sashh · 11/10/2026 16:45

My diagnosis was over 30 years ago. They took a full medical history and X-rays.

My arthritis is psioritic, part of the RA family.

Between now and then make a record of symptoms. I wasn't sleeping well, the consultant said to me, "I bet you don't get much sleep with these joints" so write down everything, tiredness, aches, pains, any meds you take, any ice or heat you use (and the effects of those things).

If it is RA take any help offered, physio, hydrotherapy, TENS machine, anti inflammatories, pian killers etc.

If it is RA it feels like the end of world, it isn't, it just puts you on a different path.

PlatinumMoon · 11/10/2026 17:05

There is a lot of advice and information on NRAS website, the national RA charity. They have many booklets which can downloaded free (although you have to disclose some personal data before accessing the ‘basket’).

Also, on Mumsnet, check out the ‘Autoimmune Disease’ topic, rather than this ‘Chronic Pain’ one.

As another poster says, the initial appointment will be a more thorough assessment as well as seeing a Rheumatologist (Consultant Doctor). I had to strip off for a gown (ie with only my knickers left on) examination which I was not expecting at all and needed help to get undressed, etc., so perhaps you need to consider this for what you wear, bearing in mind your pain levels. Also, you may have to undergo X-rays and scans, etc. Nothing invasive other than blood tests, though.

It is no use speculating about your diagnosis until you have your appointment, but I would read up only the basic info. (on credible sites) which will help you to formulate any preliminary questions. Once you have a confirmed diagnosis you can then read up and access lots of information about your disease and the medications, etc. and go back to your follow up appointment armed with relevant questions.

In other words, try not to overwhelm yourself with lots of information which may not even be relevant, depending on your diagnosis, as there will be other opportunities to ask questions. Spend these few days thinking about your medical history and make a note of when key events, symptoms and pain levels occurred as these will be among the questions they have for you. Check your family’s (parents and siblings) medical history too.

Hospitals vary in the way Rheumatology patients access services, so again, wait til you know what you’re actually dealing with and then you can seek support elsewhere where I suggested at the start of this post.

Good luck and I hope you come back to let us know how you get on.

Maryrdom · 11/10/2026 18:55

@Piggywaspushed I had a referral through an online private GP, I then booked the appointment through my partners Aviva healthcare plan as I am lucky enough to be included on it x

OP posts:
TheNewFinch · 11/10/2026 19:13

Maryrdom · 10/10/2026 11:04

Hi, I have a rheumatologist referral appointment next Friday for what is looking like rheumatoid arthritis. What should I expect and how best do I advocate for myself? Is there anything in particular I should read up on beforehand? Thank you so much.

Feeling quite scared about the diagnosis. Other than the pain/fatigue, I work with my hands and also keen climber/runner.

They will provide you what's best for you so do not worry and mention everything to them.

Piggywaspushed · 11/10/2026 19:14

Maryrdom · 11/10/2026 18:55

@Piggywaspushed I had a referral through an online private GP, I then booked the appointment through my partners Aviva healthcare plan as I am lucky enough to be included on it x

Edited

Interesting! Thanks.

Maryrdom · 24/10/2026 10:48

I had my rheumatologist appointment last week, including bloods and xray. Ultrasound next week then follow up review week after.
His initial thoughts was osteoarthritis but emphasised needed to review the scans/bloods etc. He said I had done the right thing getting checked out. At time of appointment, I was in discomfort but pain was not stopping me doing anything. But pain has become more widespread and pretty bad in feet (big toes, balls of feet) since then. He mentioned there could be a hormonal element at play due to my age but ‘there is no treatment for hormonal aches and pains.’ I don’t have other, obvious perimenopause symptoms.
Feel quite in limbo. New things seem to be aching each day. Something is obviously going on. I guess I need to keep going best I can until I have the results and make a plan from there.

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