24, Diagnosed with RA at 22. Issues with treatment

CapKang

Hi all, I was diagnosed around 2 years ago and unfortunately have had a really difficult time at the Doctors and wondered if anyone shared the same issues? When I was given my diagnosis, I was told on the phone by my doctor on a call that lasted around 30 seconds. Following this I was obviously shocked and had lots of questions, I tried to contact my doctors office but unfortunately my calls were never returned. It ended up being around 6 months before I was able to speak to anyone again at which time they seemed very shocked I had not had any further contact and had not begun medication for treatment. After this appointment I began taking medication and having more regular appointments, however I was also then referred to physio and unfortunately had another very difficult experience there. The physio offered no suggestions beyond limiting physical activity and measuring how close to touching my toes I was at each session. We never did any exercises or stretches, just talked or watched a youtube video about arthritis. He also told me at several sessions that 'the pain caused by RA is not that severe and I should just take some paracetamol and continue as normal'. Eventually I decided to stop attending these sessions as I felt I wasn't getting anywhere and my concerns weren't being heard. I have since been re-referred to physio but I am hoping to attend at a different hospital where hopefully I can get somebody with a better understanding of RA! Has anyone else had issues like this? I feel like I'm constantly chasing and calling the Doctors trying to figure out what to do next and most of the time getting nowhere!

PJoanne

Hello @CapKang, welcome to the community it is lovely to have you hear with us. Have you been referred to a Rheumatologist department at your local hospital? This is something your GP should do.

Here is some information for you to read.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://www.versusarthritis.org/about-arthritis/young-people/living-with-arthritis/

This is the link to the young persons forum.

https://community.versusarthritis.org/categories/young-peoples-forum

If you think talking your situation through with our informed helpline staff will help you, here is the link.

https://www.versusarthritis.org/get-help/

Best, Joanne

CapKang

Hi Joanne, Thank you so much for the welcome! Sorry I wasn't very clear in my post, all of this happened after I was referred by my GP to the Rheumatology department at my local hospital. Thanks for your links too, I'll definitely take a look!

Thanks,

Louis

PJoanne

Hi Louis

You are welcome, I've popped another link to Pals below, your local NHS authority should have a patient liaison service, in case you are interested.

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Best Joanne

jamieA

Hi @CapKang

I was diagnosed with inflammatory arthritis in October 2020 - in my case psoriatic arthritis. I was 65 at the time and this was the first time I'd experienced a chronic illness. I was diagnosed by the professor in charge of 2nd line A&E at the major hospital in my area. My GP and my first rheumatologist at my local hospital weren't helpful and were very offhand. I realised that I needed to be more assertive in my dealings with medics - I'm the one that's suffering not them. I eventually put in writing my feelings regarding the lack of help to my rheumatologist and to my GP surgery. My rheumatologist suddenly offered referrals to pain management, podiatry, physio and occupational therapy as well as putting me on biologics. The service from my GP didn't improve. I've changed both my GP and rheumatologist. I appreciate that's not possible for many people.

The advice I'd offer is be assertive - or get someone to do so on your behalf. I hope you get treatment that works for you soon.

CapKang

Hi Jamie, Thanks so much for your message, I really appreciate the advice! I'll certainly try this, as I mentioned in my post I often feel it falls to me to chase them regarding my treatment or results of tests etc. but perhaps you are correct and I need to be a little more assertive with that and clear on what outcomes I expect. Nice to hear I'm not the only one who has had this type of experience too! Thanks again for your time - Louis

jamieA

Hi @CapKang

I know what you mean about having to chase things - my previous GP surgery treated me like I was a nuisance but I quickly realised if I didn't chase them they didn't do anything. My previous rheumatologist told me at my first consultation I had to 'suck it up'. I know changing medics is not possible for many people but changing my GP and rheumatologist really has made a difference - I feel the medics I now see do really want to help. I'd read somewhere that putting things in writing to your doctor meant that that correspondence had to be included in your medical file - so your contact cannot be ignored or misconstrued.

Ari

@CapKang it took me a year to accept and yeah it's not normal for us take just like that and yeah after you know the right routine it feels that it's just part in life which can be handle..the same i felt scared and now coping up either it and happy aswell

SarahMac83

https://community.versusarthritis.org/discussion/comment/728255#Comment_728255

have you tried physio in a community setting? I had a great experience. My was in a local health hub.