Scared

Fedupnow

Hello, im new here and have an appointment to see a rhuematologist next week, at last! This all began in June this year out of the blue and has just got worse over time. My hands, wrists,knees and ankles are swollen and hot and the pain is unbearable. I cant take anti inflamatory tablets as they affect my stomach badly. My gp has tried all the painkillers nd am currently on buprenorphine patches and oramorph as and when needed, which is more than i like. My neck and shoulders are now joining in the party 😫

What is worring me is everyone ive spoken to has said to get help as quickly as possible or I will have unreversable damage. Does anyone else know what is classed as quickly? I'm frightened to death of not being able to get back to normal everyday activities and work.

Thank you for reading my waffling.

Hugs to you all 😘

Maya_m

Hi @Fedupnow ,

It is quite overwhelming, for sure.

The good thing is that you are expecting rheumatologist appointment and I'll keep my fingers crossed for you that you'll get some answers. I think getting referred is usually the hard and often delayed process. My rheumatologist was very decisive and set a firm plan of investigations and treatment without any further delay. They know what to look out for and aim to prevent any serious permanent damage. Sounds like your flare up is pretty bad and quite sudden too, so it's good that you don't need to wait forever to be seen. It's scary but some patients have their diagnosis delayed by years.

I'm not an expert and it's hard to say how quickly is quickly - depends on the disease, age etc.

I was very scared too, not wanting to imagine life without rowing (my love). Or even without getting about easily as I used to. I still am scared but hopeful and fighting through it. Hoping the treatment will give the right results and I will carry on with "mind over matter", when the matter is not completely useless 😊

And I will keep my fingers crossed for you. Hope it goes well and you'll be more yourself soon! 😘

annabanana

Hi @Fedupnow , thank you for posting on the community and welcome! So sorry to hear that you're going through that at the moment but you are definitely not alone.

I went through something similar, my rheumatoid arthritis went undiagnosed for about 4 years but as soon as I was diagnosed the focus was on controlling my arthritis - I imagine the same will be for you. Before starting medication to manage my arthritis, the only pain medication that would even touch it was tramadol but after 3 years now of being medicated for RA, even on my really bad days the pain is not only so much more tolerable but also requires "lesser" painkillers. Having said that, everyone is different so your journey may very well be different to mine but I truly hope everything works out for you. It's very possible that you may have permanent damage and can't do everything like you did before, but if that is the case then everyone in the community is here for you 😊.

best of luck!!

(I have also attached some links which you may find helpful to have a look through.)

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

https://www.versusarthritis.org/about-arthritis/while-youre-waiting/

Baloo

@Fedupnow I believe the accepted wisdom is that you need early treatment for a better outcome.

Bear in mind its a heavy mixture of physicians advise and self help, the more you can do of both, the better.

Meanwhile the progression of arthritis is generally very slow. In my own case the first four days I was immobilised and in hospital. Treatment and tests and guidance put me back on my feet. After a couple of years nursing myself along, I was able to drop the painkillers and get myself back on a bicycle (bearing in mind having to be real careful not to put too much weight on any joints, otherwise the aches and pains will just come back again, for however long it takes them to settle back down again, sometimes a few days, sometimes months)