hands and feet spasming and having to use wheelchair whenever i go out - do i leave this until next app?

I have been on mycophenolate since may, it has helped considerably with the joint pain and swelling and am very thankful for that. However I have had a couple of huge flares which i don't seem to be able to completely get over. in some ways I feel better but in others i feel so much worse.

In the morning I am very weak and shaky. My legs are like jelly and my whole body seems to have a tremor especially my hands. the weakness does seem to ware off by mid day but for the last 3 months or so I have been unable to go out of the house with out my wheel chair. I have tried to make the effort of going for a walk each day and trying to walk a lamppost further every couple of days. I think I am up to about 300m now,

the other thing I have noticed is that my hands and feet keep going into spasm, now this is ok when i am sat at rest, but I keep dropping things and loosing my balance and I am going to end up hurting myself sooner or later.

the other strange thing is that I always have weird paranoid / neurotic dreams before a flare, but they are now filling my day time thoughts - its awful. I can't tell my partner this bit as i don't really know how to explain it

I have also gone from 8st 10 to 7st 7lb in 6 months whether this is relevant or not (?)

I should have had a rheum app in November but I was ill so the clinic didn't want me to go, they gave me a new app for the end of march. My docs always say they don't want to interfere with the rheumys plans - cop out in other words - but i am not sure whether this is a normal symptom or whether i should try to get an earlier app.

any suggestions would be greatly appreciated :)

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  • get u're arse 2 the docs my lovely just 2 double check & b on the safe side. Better yet, phone the Rheumy clinic & c if u can get an appointment with a rheumy nurse. If u explain the situation, they should b quite accommodating ;0)

  • I agree with Sher, you can't put up with these symptoms until March. The rheumatology nurses are always very helpful & understanding at my hospital, & will speak to the consultant on your behalf. If you haven't got their number, the rheumatology secretary will give it to.

    It sounds like a GP who knows more about lupus would be helpful too, maybe someone younger & more up to date? My GP is rather over cautious when it comes to lupus symptoms, but I would much rather have it that way. You could contact your local lupus UK group & see if they have any recommendations of GP's in your area.

    I get weird dreams & neurotic thoughts when lupus is flaring too, & it really is scarey. It's easy to underestimate how much lupus can effect the brain, but so hard to explain to anyone. So don't let this get out of hand. Get help asap.

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