Advice for Rheumatology appointment needed

RuthieB

Hi there,

This is my first post & I'm feeling a bit overwhelmed! I've had symptoms of inflammatory arthritis for nearly 2 years but still no diagnosis. I don't understand why, but despite having ongoing symptoms, the rheumatologist discharged me about a year ago without me knowing (maybe because at that point there was nothing on the ultrasounds or x-rays?).

So I'm back in the queue and due to be seen in September. I have pain and heat in multiple joints bilaterally, ++tendonitis, now affecting basic ADLs. I have RF of 27, and Anti CCP2 Antibodies of 231 (I understand 1-10 is normal). I am also hypermobile & wonder if that is interacting with everything else.

With all the wisdom and knowledge from your own experiences, can you tell me what you'd be doing now if you were me? Or how to prepare for my appointment?

Thanks so much for your help,

Ruth

PS - the photo is from a cycling trip in Patagonia a few year ago. Now struggle to open a jam jar.

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jamieA

Hi @RuthieB

If you aren't doing so now I'd suggest you keep a diary and record all your symptoms daily. I'd also suggest you write down all the questions you want to ask beforehand, take two copies and hand one to the rheumatologist. Take a notepad and pen with you to write down the replies. Take someone with you so you can discuss the responses in case you've missed something.

Lastly I'd suggest you need to be as assertive as you can be - it's you who is suffering and the last thing you need is to be palmed off and left without answers.

claudsl

Hi @RuthieB

I'm sorry to hear you are experiencing a lot of pain. At least your Rheumatology appointment is coming up soon. I agree with @jamieA and i think keeping a note of your symptoms would be very helpful. Especially keeping track of certain times of the day when your pain is at its worst. Writing any questions down beforehand is also a good idea, as sometimes when you're in a situation you can become overwhelmed and you may forget about important things you wanted to talk about.

Really hope this helps and please let us know how it goes!

All the best, Claudia

Gadgetgirl

Hi

Yep, I would keep a diary. In mine I list the symptoms if any and time of day, what I have eaten, the weather, so temp and the humidity (as high humidity can impact inflammation), and what exercise I’ve done or activities and my menstrual day. This way I can look for a pattern to see if anything triggers/ makes worse. If it helps I try and stick to a Mediterranean diet, do weight training and regular hot sauna and cold plunges to help reduce the inflammation. Take a note book with questions and I hope you get the answers soon.

Marley74

Poppyjane

Good morning @Marley74

Were you trying to post a message to the online community?. We are a friendly group offering support to anyone affected by living with arthritis so do try again.

Best wishes

Poppyjane

Emmasknackeredjoints

Pain dairy.

Pictures of joints when swollen

Mark with a pen where pain is and take pic or video on phone.

Seronegative IA is normal bloods .

RF is useless on its own dosent mean u have RA

U can have IA with normal.bloods and imaging.

Dont be fobbed off.

Emmasknackeredjoints

A good rheumotologist is key.