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So I went to see my rheumy yesterday and he spent a long time with me discussing all my symptoms and my latest flare up. He has now decided that I have fibromyalgia as my main disease with secondary sub-cutaneous lupus, systemic vasculitis and pernicious anaemia. I am so confused as I have spent the last 9 years thinking lupus was my main cause of all my symptoms?! Consequently he has stopped all my meds and has suggested that he doesnt need to see me again unless I feel my symptoms have changed in which case I can refer myself back at anytime. I am just really confused about all the conditions and my latest flare has lasted for 6 months now with no let up. Has anyone else got a similar diagnosis or situation? Thanks Rachy x

4 Replies

Make an appointment to have a discussion with the doctor. Ask what, specifically, led him to change your diagnosis. Fibromyalgia is a purely clinical diagnosis, which means it is based on symptoms because there are no lab tests for it. It is also quite possible and even common to have fibro in overlap with lupus. Your 'secondary" conditions still need to be addressed and treated. Pernicious anemia would most likely require vitamin B shots. Vasculitis needs to be controlled. You are at least entitled to an explanation.


So sorry to hear that Rachy. That just sounds really cruel, especially seeing as you're still experiencing symptoms. And taking you off your meds?...I know a few doc's that have done that and I just can't see why (funding) leaves you feeling (and being) unsupported!

I would just go back (he said you could) and say well I've still got symptoms - I did when you dicharged me...and say it doesn't matter which order he sorts your conditions into they still all need addressing!...

- Fibromyalgia - treatment please!

- Secondary sub-cutaneous lupus - treatment please!

- Systemic vasculitis - treatment please!

- and Pernicious anaemia...treatment please!

Get it done doc!

He obviously thinks he can just make a massive change without really explaining why! seems like they think once they abandon a patient that we just cease to exist!

Ooh that makes me angry, wish I could go with you!

Realy hope everything gets sorted soon Rachy xxxxx


You're funny, I like the 'treatment please'.


Hee hee hee! :) :)


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