Newly diagnosed and worried

MrsPledgend

Hello, I’m Tanya, I’m 44 and have been in chronic pain for about six months now. Three different doctors and a physio dismissed my concerns with one literally laughing in my face when I said I thought it was arthritis. Finally a couple of weeks ago a GPactually listened to me, examined me and said it looks like arthritis because or the swelling in my joints, the pain especially at the beginning of the days and the warmth in my joints. He sent me for blood tests and the results showed what should has been at a level of 4 was a 28.8, indicating rheumatoid arthritis. The x rays also showed erosive arthritis.

I’m scared as it’s been a rapid decline starting in my feet and now it’s in my feet, hands, wrists, knees and right hip. I’m the primary carer for my two disabled children. I can’t afford to not be active. Also I don’t have private healthcare and without seeing a consultant at hospital I cannot get the drug I need prescribed as it’s an amber drug. The wait in the nhs is very long so I’m thinking about getting a loan to see a private consultant and then hope I can get the drug via the nhs after the initial prescription. Has anyone else gone down this route please?

I’m 44 but right now I feel more like 88 😔

Louisa77

Hi @MrsPledgend

Welcome to the Online Community, we are a supportive friendly bunch.

Sounds like you've had a rough time getting a diagnosis, unfortunately this is not surprising and happens often. The waiting lists are causing more people to explore private healthcare. It's such a challenging time for many needing nhs support currently.

I've shared some information about your condition which has details of the treatments too along with info to support you whilst your waiting:-

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

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

Best wishes

Louisa

JC1978

Hi @MrsPledgend

I was a similar age when diagnosed in 2020 at the start of the pandemic, and had already been through what you are describing. I think now you know you have inflammatory markers in your blood and know you're not going nuts and you're being taken seriously you'll start to feel less alone. I forked out a few hundred quid to see a rheumatologist because I was dismissed by the gps. The physiotherapist had made a referral recommendation.

I had saved the money for a new carpet, but I figured I can live with an old stained carpet for a little while longer (I still haven't bought a new one but it hasn't killed me yet 🤣) . It was the best money I've ever spent. He referred me to his NHS clinic to run further tests. He's been brilliant. I felt a bit bad as if I was jumping the queue, but when I thought about it I told myself I shouldn't feel bad because I should have been referred a couple of years before I was and shouldn't have been forced to spend my own money.

It's really difficult to stay positive but there are some really effective treatments they can prescribe. It might take a few adjustments to get the right one for you, but once the inflammation is under control you'll feel like a new woman, especially as you've been suffering so long

Don't give up hope xx

Jenny xx