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would like to thank you all for answering all the questions my gp and rheumy could not( mystery pains, nasal sores, funny smells etc)

was wondering should i ask to be referred to a lupus specialist as at the moment the rheumy people are quite vague. i have ra, sjogrens, raynauds as well as lupus, but they seem to lump it all as one and call it mixed connective tissue disease. also if i mention that i read up about a symptom on here they roll their eyes!!

4 Replies

The internet is full of worst case scenario stories, and it is difficult to filter good and bad info. Also with lupus being so personal ( customised), what applies to one person may not apply to you.

This is compounded by the lupie fog which makes processing any information rather messy.

But dont let the professionals tell you how it is.


haha,yes i get the lupie fog too- I agree but its nice to know others feel the same and i'm not a hypochondriac!!


Not a hypocondriac and not going mad. It is very easy to doubt yourelf, even after many years. This forum and the facebook group which I am part of are very good for giving a perspective. And seeing where I fit into the spectrum of lupus and its associated and related conditions.


At my last rhuemy appointment, she said to me 'you know more about how this disease effects your body than anyone.' As you can imagine, I could have kissed her! I've had 10 years plus of rhuemies telling me how it should be. But as Thaddeus says, lupus effects us all so differently.

I am wary of telling doctors what I have read. Maybe they feel like we are telling them how to do their job, when in reality all we want us the best help we can get with this dreadful illness. But I do think if you can display some interest, & a reasonable amount of knowledge, they will respect you for it, & speak to you on more equal terms. If I feel it's worth mentioning a quote I will always give the doctor or reputable source I got it from, ie Dr Graham Hughes or Lupus UK.

I do think lupus specialist are the way ahead. I'm planning to ask my GP for a referral as soon as I've got the energy to get there. Rheumatologists seem to have a board overview, but not the specialist knowledge we lupies need.

Best wishes. X


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