Well I've just seen my consultant today and explained to him why steroids didn't agree with me (he was shocked by my near-death experience -when I nearly took my own life due to a bad reaction to them!). I also explained that the side effects of Naproxen (increased brain fog, gut pain, bladder discomfort, palpitations) were not helpful to me. He agreed that I am very sensitive to drugs. He only prescribed me the lowest possible dose of steroids 10mg but even this was too much for my system.
I also explained to him the success I've been having with the diet. As I've said before, I'm now gluten free, sugar free, and I limit my dairy and chocolate intake as these give me headaches. I take Turmeric and Omega 3 fish oils. I know the diet is working because I notice that if I break the diet I get an immediate increase in symptoms. I am also now only taking Naproxen here and there, not on a daily basis like I was before. He was impressed and encouraged me to continue with the diet! He also seemed to support my request to be referred to a homeopathic hospital (I didn't know they existed until a friend in Scotland who has Lupus was referred to one!). he said I had to be referred through my GP.
I had a few concerns to talk to him about. Although the pain in my joints and tendons has reduced over the past 3 months, I have a continuing problem with neurological symptoms. I'm having a type of flare at the moment that I get regularly, characterised by vertigo/dizziness, brain fog/poor concentration, and this comes along with negative voices in my head telling me I'm a waste of space and such things. Not pleasant. I often can't do anything much but watch films/TV on days like this and these flares often last a week.
Does anyone else get vertigo? It's when you move your eyes to the left or right you feel like you are falling, turning my head to quickly makes me feel disorientated and likely to stumble if I'm standing up so I have to stand up and walk very carefully. I sway all over the place like a drunk person and sometimes I nearly fall over!
It's interesting that the bad thoughts/voices in my head only seem to occur during a flare with these symptoms, and they go away as soon as the vertigo and brain fog disappears. Has anyone else experienced this?
I also get strange sensations in my hands and feet, like a subtle tingly restless feeling (but not restless leg syndrome) and I don't know what to do with them so I fidget. It doesn't interfere with sleeping thank goodness. No numbness or actually tingling.
I talked to him about all this and so he's referred me to neurology.