Just an update after the burning feet and legs post and helpful replies. Today's appointment with my consultant has been interesting. I left with a confirmed diagnosis of SLE, as opposed to probable and two rheumatologists concurred in opinion that my newest 'symptom' was indeed Erythromelagia, separate and distinct from Raynaud's so both need to be treated separately.
Nerve conduction tests have been ordered as I barely felt the pin stuck in the top and sole of both feet, although feeling was not too bad from ankles upward. I also had an abnormal reflex in right foot. Pics of joint swelling/pain/rashes all noted and was asked to keep documenting it all in that fashion as it was really helpful.
It seems that the varying pain in my neck, shoulder, hips, lower back, right leg and ankle is worse now because of lupus arthritis on top of the existing issues.
Raft of bloods taken again to check everything - they will call with the results early next week and will then talk to me about options for managing Raynaud's and erythromelagia symptoms.
My blood wouldn't shift today - blue hands and all that! I had it taken from my hand after my arm wouldn't play ball. Fine til I got home then sprung a little leak while making tea haha - all okay now thanks to duct tape, kitchen roll and creativity!
I was asked to call the clinic helpline to report any worrying changes rather than wait 5 days for a GP callback. They were also unimpressed that GP had asked me to use hibiscrub on a very angry photosensitivity rash 😂
Didn't ask everything on my list but there was a lot to get through, including the Doc consulting a colleague to confirm a diagnosis. All staff at all levels in the clinic were rushed off their feet and the clinic was over an hour late. All staff hugely apologetic and unfailingly polite. Dr's comment was that they were expected to deal with complex individuals in 20 mins which wasn't always possible. I'm very grateful that they say b******s to targets. 👏👏👏👏👏