Confused

tootsy

My first time posting but here goes… newly diagnosed with rheumatoid arthritis December last year and given hydroxychloroquine. 3 months on and some of my symptoms have improved (knee easier, hands less stiff and sore, Achilles tendinopathy less painful) but I still have soreness in my feet. I kinda feel stupid and a bit almost like a fraud as all blood work taken at initial appointment and then subsequent review have all come back as inflammation levels normal and scans and X-rays show no significant synovitis. It’s almost as if it has gone but I still have pain and fatigue and still get feverishness and so on. Has anyone else felt like this or am I being daft?

tootsy

Forgot to say initial blood tests by GP in October last year showed inflammation was very high and seropositive for rheumatoid factor hence I was referred to rheumatology for investigation

frogmorton

Morning @tootsy nice to meet you and welcome you to the forum.

I've lost count of the number of times someone has said their bloods don't reflect their symptoms.

When are you next at the rheumatologist I wonder?

I suggest you let them know just how you ate feeling it may be that your meds need a tweak.

Take care

Toni x

jamieA

Hi @tootsy

I recognise what you mean about feeling a bit of a fraud when only blood results are considered. I have psoriatic arthritis not RA but three and a half years since initial diagnosis I don't think at any time I've felt I'm back to the way I was previously. That's despite my blood tests showing my CRP and ESR levels now being below average - in fact my rheumatologist last week termed them as negative. However she recognises that I still have issues with a number of my joints and the drugs are dampening the condition not eradicating it. In the past I've been asked to rate my condition on a scale out of 10 - with 10 being me at my worst. It's never been zero. I don't think our treatment is - or can be - an exact science. What works for one person may not work for someone else. I'd agree with @frogmorton that you should let your rheumatology clinic know that you are still having issues and they may be able to offer a solution - whether that be a change in drug quantity, change in drugs or a steroid injection to get you by allowing your existing drugs more time to take more effect. They could also offer referrals to other services such as a pain management clinic, physio, occupational therapy and rheumatology podiatry if they have them in your health board area.

One thing I've learned in the last three and a half years is not to be a passenger in my treatment - I've become more assertive in my dealings with medics.

Hope you get some help soon.