Question: Hi went to my dermatologist today .a new... - LUPUS UK

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barbdockeray profile image
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Hi went to my dermatologist today .a new one as other of sick ...she said she had never seen anybody with as many complex problems as myself .and said ooh bless how do u manage to work full time ..i said because i have to .....has anybody else got such a mix like myself lupus sorgeons raynards etc .

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barbdockeray profile image
barbdockeray
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8 Replies
MargaretGail profile image
MargaretGail

Hi Barbdockeray, I have SLE, Sjogrens, Reynauds, Arthritis and hyper mobile joints :)

jellynpain profile image
jellynpain

Hi,

I've cfs/me, Fibromyalgia, arthritis, atrophy thyroid, micro adenoma, severe light sensitivity and awaiting possible Lupus type.

Seems peeps with autoimmune suffer quite a variety from what I have read 😞.

Wish I had a £1 for every time a Dr/Consultant mentioned being complex..... wouldn't make us better but help with the piggy bank haha x

Barnclown profile image
Barnclown

Yes: me too: I've got the SLE-RP-SS mix too (+ a heap of other secondaries inc erythromelalgia, lichen sclerosus etc)....and am Ehlers Danlos-type hypermobile

my consultants believe my version of lupus was probably more active before I hit an early perimenopause...since then, they say, I've shifted over to mainly managing lupus-related progressive debilitation with sjogrens more active.

Yes, consultants frequently say I'm complex (& also unique due to inutero DES exposure & infant onset lupus), but the 4 or so years i've spent here on forum & with my local lupus UK support group since re-diagnosis have helped me keep my version of all this in perspective...thanks to lupus UK, i know I'm not so unique or unusually complex, and I feel less isolated and lonely....instead I feel in great company - doing the best I can to cope, inspired by everyone here.

My lupus went unrecognised & untreated most of my adult life, while my secondary conditions got diagnosed & treated...meanwhile I was v lucky to manage to have an understanding & supportive employer who put up with all the sick days & drs appts....and even let me work at home much of the time. But, due to DES birth defects, I was unable to have children. It is what it is.

Renu profile image
Renu

Hi, I too have a host of different auto-immune conditions including SLE, polymyositis, neropathy and a few others. I remember going for a muscle biopsy op a year or so ago, and the nurse looked at my medical history in the operating theatre (just before surgery!) and called me "a medical disaster." I was so hurt and upset. I did not do anything to deserve that insensitive comment ! I told her that I had been called "a challenge" before but never "a medical disaster." I also said I didn't want to be a medical challenge for anyone, just to be "normal" like the next person! She was really embarrassed and served her right!

Renu xx

Barnclown profile image
Barnclown in reply to Renu

Hooray! Well done! You're great to be able to come up with a good reply when you were on the spot in tough circumstances!

Carcrashgal profile image
Carcrashgal in reply to Renu

Good reply. I know they just don't think, but I wish they did. They have no concept of how much words can hurt. Every day I miss my former GP - for 10 years until he retired we kept up the pretence that I still lived in his town so he could continue to treat me. He told me - with a big smile - 'I am never bored with you on my list' - and, 'Well, I've never dealt with X before, so we'll find out together'. I always appreciated that I had some challenging conditions, but Dr K always treated them as a challenge for us both, and morever, one that could be overcome. Sadly, my current surgery is . . . Well, let's say 'challenging', shall we? :-)

Have a good day, Lupies all!

Renu profile image
Renu

Thank you Barnclown for your lovely message! It put a smile on my face!

Renu xx

Barnclown profile image
Barnclown in reply to Renu

😉 XO

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