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lupus, sjorgens, marfan and raynauds

I was not feeling up to much today so thought id surf ive just found on you tube 6 part talk on sjorgens called at the beginning from the USA, i found this really helpful even thou ive read about my conditions I didnt realise that alot of my complaints/pains come from sjorgens not the lupus (which ive been blaming for nearly everything) I found it weirdly positive they talk in a matter of fact manner. It cheered me up so thought id post it up. Good times could be ahead...

4 Replies

Hello niksB

I was told that I had Sjorgrens and Anti-phospholipid syndrome, but not Lupus itself. And after some reading found that the overlap of symptoms meant that i was potentially all of the Lupus stuff, but without the name.

Which why we tend to use terms like lupus family .

Interestingly some years later, my new consultant at St.T's has clarified that I infact have Sicca syndrome and not Sjorgrens. Which is to say a dryness of random mucus membranes -where sjorgrens tends to follow a pattern.


Its amazing to think this is all going on in our bodies and yet its sooooo complicated, I see Dr D'Cruz at the london bridge lupus hospital, and thankfully he looks at the whole of you as a picture or jigsaw. In the past ive seen so many different doctors that i was being told this and that which contradicted each other and i didnt know if i was coming or going....


The right doctor is worth his or her weight in gold. And the whole picture is the thing. I have read so many sufferers tell of being messed about by doctors after years of this and that. But aches and pains and sore bits and headaches taken in isolation can mean anything or nothing. When you look at the bigger picture it all make more sense.


Hey NiksB & thaddeus: thanks!

Your posts are helping me a lot to better understand the process of diagnosis I've been going through for over a year now. I'm in the sicca syndrome, provisional SLE with several secondary conditions phase, and have kinda understood this game is all about working step by step with a really good gp, rheumy & associated specialists, hanging in there, waiting & seeing (well, I should have figured this out by now as have been doing this all my 58 yr old life anyway, just without the drs realising I had been diagnosed with lupus as an infant & teen back in the '50s-60s: but my mother never told me: ha ha)

And I sorta understand that in the meantime we gotta expect curve balls: have been on high strength antibiotics for 11weeks treating what seems to be a long standing jawbone/sinus infection: going from dept to dept trying to understand what it's about. Am used to seeing loads of specialists but have never had such aggressive continuous antibiotic treatment. Sorta typical, as 7 months on plaquenil has made me feel possibly a bit too relieved and thrilled: it's been taking the edge of many of my other symptoms. The antibiotics taking has brought me back down to earth: bump

But reading your posts helps me keep calm & carry on


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