Help with RA pain

[Panda91]

I am in so much pain at the moment I am taking my predication and painkillers. I am using heat pads, stretching, massage gun, cbd oil and ibuprofen gel but nothing is touching it. I can’t get a physio appointment at the hospital or doctors and cannot afford a private physio. My RA team just dismiss me and don’t help. I am struggling to walk with pain in my hips and the pain in my hands is constant. I just don’t know what to do, has anyone got any ideas?

[Hidden]

Do you have a decent GP you can speak to perhaps? It sounds like you’re not getting enough help from rheumatology so you may need a GP to take the lead on your behalf because it’s unacceptable to be left dealing with so much pain.

Given this is Lupus UK rather than NRAS HU I’m assuming that you have both and that you’re on treatment to prevent erosive disease occurring? If so then I suggest they need to do imaging to make sure your maximally treated. There are so many treatments for RA, not to mention steroids to tide you over until new treatments or increased doses take effect.

Sounds to me like it’s time to shout and kick down a few of the right doors in order to be heard. XX

[Panda91 in reply to Hidden]

My GP isn’t much help either and I am new at the surgery so that doesn’t help. I do have lupus and RA. Thank you for your comment, I have been asking to change my medication but all I keep getting is to take painkillers and getting fobbed off. They did prescribe me tramadol and codeine a while back but I couldn’t take them, I couldn’t function on them and they understood that but haven’t suggested anything else. I will keep pushing thank you, just so frustrating and upsetting.

[Hidden in reply to Panda91]

I am in a very similar situation with a new surgery (notes not yet through) and my GI tract -which causes me great pain and leaves me housebound a lot of the time. So I do understand - particularly having been diagnosed with RA ten years ago. I may have both Lupus, Vasculitis and RA in my mix - definitely Sjogrens and systemic sclerosis - but it’s gastroenterology who seem to have failed me most by far and like you I don’t know how to get through to them. They just seem not to care. So I understand.

Do you take any disease modifying/ DMARD drugs and get your bloods monitored regularly? If not maybe that’s what you need to request from new GP practice so that they can check your inflammation markers. After that you could request an appointment with a GP to discuss and describe your pain. There are protocols to follow for GP and rheumatology if your symptoms aren’t being addressed by current medications and the rheumatology department has a duty to treat you according to your disease activity score - which includes pain.

Meanwhile is there a rheumatology nurse you could speak to perhaps? X