First appointment with Rheumatology

anneka87

I've had a difficult journey so far and really had to fight to get a referral to rheumatology. I've been in pain since march and things have worsened. I have felt like no one really cares or has been taking me seriously.

On the positive side I have my first appointment in a week. I know it's probably been asked before and I have looked at the archives. But just a couple of questions…

What preparation should I make for the appointment?

What information do they need?

What questions should I ask?

I just want to make the most of the appointment as it appears to be just a 20 minute slot. I'm so worried I won't be taken seriously. Any advice would be very much appreciated.

Thanks

jamieA

Hi @anneka87

I suppose the questions you ask are dependent on what type of arthritis you have and how it is affecting you. If your pain levels are your most urgent need ask about prescription pain relief or referral to a pain clinic. You could also ask about physio and occupational therapy. I'd suggest you write down all your symptoms, where it hurts and the questions you want answered on paper beforehand - and maybe hand a copy to the rheumatologist. Take a notepad and write down the responses you are given. I've found it difficult at times to remember all that was discussed in an appointment. If it's possible it might be worthwhile taking someone with you. One piece of advice I'd offer is to be assertive - it's you who is suffering. I've found a number of medics - including my first rheumatologist - less concerned than they should be regarding my condition. I've also met some really empathetic medical staff.

I hope you get what you need out of it.

Weeyin

My Rheumatology dept at QEUH, Glasgow have been fantastic. Keep a note of all helpful phone numbers. The nurses are usually the easiest to see & are highly experienced, much better than your GP. Write down questions - what are you struggling with in particular? Have you any questions? Issues can change throughout the week so keep a pain diary. It is nothing to be worried about. They are here to help so make the most of a great service. Good luck, Maria x

Weeyin

If you find you forgot to ask something at the appointment just call Rheumatology as a nurse may be able to provide info, Maria x

Woofy

Hi. They will probably ask you when the pain started, and where.
you will probably be examined, so wear loose clothing, they will probably do blood tests. Take a drink and a snack, 1st appointments usually take longer. And lastly, don’t try to be brave, tell them how bad things have really been for you.

Good luck😊

anneka87

Thanks so much everyone. It's weird, I've been waiting so long for the appointment and I'm feeling very nervous.

I meant to ask if I should go unmedicated so they can appreciate how much pain I am experiencing?

Woofy

Hi and welcome. If you can 3 days before your appointment, but I am sure you will be able to tell them about the pain. Good luck.

annabanana

Hi @anneka87 and thank you for posting in the community! Seems like you have thankfully already already gotten some good advice from other members but I personally recommend the Versus Arthritis Pain Tracker App.

https://versusarthritis.org/about-arthritis/young-people/arthritis-tracker/

I can personally recommend this app as it makes tracking pain before rheumatology appointments so much easier, in my opinion. I have also attached a link which you may find useful to read through - good luck at your appointment!

https://www.versusarthritis.org/news/2023/june/how-can-i-prepare-for-a-doctor-s-appointment-if-i-have-arthritis/

aseamark

Hi

Wondering how you got on at your first appointment. I have mine this week and am strangely anxious!

anneka87

@aseamark hi!

The rheumy was lovely and took time to listen to me, studied blood tests the GP had done.

She felt inflammatory arthritis was unlikely as bloods are normal and swelling in my knuckles doesn't feel like rheumatic swelling?

She threw a curve ball and stated she felt I have fibromyalgia. Which was a shock as my pain is limited to joints in my hands and feet. Though she did say it's possible to have both fibromyalgia and rheumatoid arthritis.

I have to have an ultrasound or my hands to confirm one way or another. Should get an appointment within 6 weeks and then she'll see me again to discuss.

I was so disheartened and cried for the rest of the day and sulked all week because I have no answers. Also if it's fibromyalgia it is managed in primary care and my GP surgery is useless'.

I've had pain since march and feel very low, disheartened and feel like giving up if I'm honest. They whole process has taken so long and my life is on hold.

I'd recommend keep a diary of symptoms, what helps/doesn't help etc and taking it to the appointment. It just helps you to make the most of your appointment. Good luck 🤞 🍀

Woofy

sorry you are feeling deflated.
wait until the ultra sound is done. I had to have two before they reached the decision that I did have RA.

Sometimes things take a little longer. I have found Arthritis isn’t straight forward by any means. Whilst you are waiting, maybe find out if there are flbro support groups in your area. If that is the diagnosis that you get, at least you will have somewhere to find support and advice. Good luck.

RuthieB

Hi Anneka,

Sorry to hear you still don't have answers, I'm in the same situation. I wondered which blood tests you've had done? My recent bloods show I have slight elevated Rheumatoid Factor of 27, but incredibly high levels of Anti CCP2 Antibodies at 231.0 U/mL (1-10 is normal). From what I understand this is indicative of RA.

Just telling you the above in case those tests have not yet been done. And even if you do get them done and they come back normal, it's still worth asking for them to be repeated in a few months if your symptoms are ongoing.

I hope you get some answers soon. Be persistent. And make sure you see the same GP every time, I think that's part of the problem in my situation.

Ruth

Susiesu1958

I’m so scared in so much pain I have osteoarthritis and it’s now in my elbows and shoulders I have inflammation in my fingers and carpel tunnel spinal dddand facet joint arthritis waiting to see reamotologist should I go private but can’t afford the follow up tests so anxious and depressed loosing my independence painful walking I also have crepitus affecting all aspects of my life

Susiesu1958

Anna

Hello @Susiesu1958,

The pain from arthritis can be really scary sometimes - I know many of us will understand a bit of what you’re going through. I see that @noddingtonpete has given you some suggestions in a previous post on how to help you get through these horrid flare-ups and I hope they were helpful. Would it help to chat to someone about how you’re feeling? The helpline is available every day from 9am -5pm and they are very friendly and supportive. Here’s their number - it’s free to call them - and a little bit more about how they might help:

https://www.versusarthritis.org/get-help/?gad_source=1&gbraid=0AAAAADBwqpkH_-7NOlz4J5U3HphZOnouh&gclid=EAIaIQobChMIy82XocXFiQMVrJNQBh3izB_hEAAYASAAEgLuH_D_BwE

All the best, Anna ( Moderator)