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Real members of myRAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myRAteam Member asked a question 💭
Wolverhampton, UK

Iv lots of pain in my hands and feet
Was diagnosed with RA put on loads of meds
Then I moved house and area
The new consult took me of all the meds had more blood testS my inflammatory markers was low my RA was raised and still is and I’m still in a lot of debilitating pain but my consultant won’t put me back on the meds he says no inflammation no RA. He says I have a pain disorder.

February 11, 2020
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Answer Summary

Members rallied around someone whose new rheumatologist dismissed their debilitating hand and foot pain as a pain disorder despite raised RA... Read more

Members rallied around someone whose new rheumatologist dismissed their debilitating hand and foot pain as a pain disorder despite raised RA markers, with the resounding advice being to find a new doctor immediately and advocate fiercely for proper treatment. Several members shared that they too have persistently low inflammatory markers yet still test positive for RA and experience severe pain, swelling, and stiffness that requires medication like methotrexate or prednisone, with some noting that damage can exist even when inflammation doesn't show up in labs. A recurring theme was frustration with doctors who rely solely on test results rather than listening to patients, and encouragement to seek out specialists at teaching hospitals, request updated NICE guidelines, or ask for specialized blood work like Vectra testing.

A myRAteam Member

Wow that doc is clueless. I always have low inflammatory markers even when i walk in and im so swollen i can barely walk. Mine have always been hiding but i tested positive for RA. So i would find another dr!!

February 12, 2020
A myRAteam Member

I am seronegative and my markers are always negative. My old rheumatologist told me I was well controlled. Several times I was in severe pain and flaring and my markers still showed negative. I changed rheumatologists a few months ago and have found I have many issues. She tried to tell me I was under control until I told her about the markers. I was a clinical lab technologist for over 35 years and have found that the body has many ways to compensate for disease and it really has to be bad to show abnormal results in many cases. These doctors have minimal training in lab values so this is why things are not attended to or explored. It is frustrating. I wish I knew what I do now. Maybe I wouldn’t be looking at a major surgery. Keep advocating to get the care you need. No one knows it seems how to help us.

October 11, 2024
A myRAteam Member

I am diagnosed with what the doctors called zero negative Rheumatoid Arthritis.my inflammation levels go around 3, but my vectra blood work is in the high 50's which is why I take the meds. you may want to get this blood work done. Good luck, I hope your doctor starts listening to you needs.

February 18, 2020
A myRAteam Member

I see you’re in the UK. Check out NICE guidelines they have recently been updated! Well worth a read. Treatment should start as soon as diagnosis is made now and it’s very targeted usually two DMARDS eg Methotraxate and Sulphalzine . It’s worth going in prepared with what The rheumatologist has to follow in your treatment. If your inflammatory markers haven’t improved there’s clearly something going on. Good luck

February 13, 2020 (edited)
A myRAteam Member

I was eventually diagnosed with Chronic Pain syndrome. No treatment as drugs don’t work so using mindfulness exercise and a lot of putting up with it 🤷🏻‍♀️

February 13, 2020

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