new to this

[suemac]

ive been diagnosed wihh disciod lupus a year ago and still dont no much about this i feel so lousy althe time i keep getting things all the time and no one gives me any answers i think its sle lupus ive got because of the symtoms i feel so alone with this condition

[Paul_Howard Partner LUPUS UK]

Hi suemac,

Would you like me to send you one of our free information packs so that you can learn a little bit more about your condition and how best to manage it?

If you would, send me a private message or email [e-mail] with your name and address.

Paul

LUPUS UK

[Hidden]

hello suemac

i m sorry to hear how alone you feel,i too felt exactly like you when i was told i had sle lupus not discoid,it was such a shock and i went home from hospital and cried all night long and the next day and the next, i couldn t get the idea of having a serious disease out of my head it felt like my life had changed forever,which is in fact true.

it has taken me a few months to finally come to terms with it and get on with my life, i didn t think i could have done it with out a lot of support from friends (true friends) and family but i have, and although its always with you and you are reminded of it everyday you can have a good life. stay positive.

debs x

[dawnepearse]

Hello, I know exactly how you feel, I too was diagnosed last year with Discoid Lupus, but I seem to get a lot of other symptoms that sound like Systemic, I do get fatigue espicailly when the sun is out, at the moment I am trying to control acid reflux which makes my throat feel like I have swallowed an apple whole!, The rashes are awful and I dont think anyone can understand what it is like if they dont suffer, I felt very down last year as I have a smallholding and was wondering how the heck I am going to manage this summer, I have excellent family support though and Hubby is just begining to understand that although I look well I may not feel well, I thought that DLE would just affect my skin but that is not the case, all sorts of wierd things become apparent, my husband says he has noticed a 'cycle', taking care of my skin has been my priority, although we have not had much sun yet to test us I make sure I always use cetrabin after a shower to keep my skin from drying out, this has helped also I now take antihistamine daily which has also improved my skin rashes. I think i was depressed last year though I never admitted to anyone, but this year I am approaching it with a more positive attitude, find out all you can, but try not to frighten yourself with some of the info out there, if something does not work, try something else, easier said than done I know especially when it seems like a downward spiral. Ask all the questions you want there is always someone who will help.

[suemac]

Thanks for your comments. I'm glad I've foud this site. Hopefully I can gain a better understanding and the opportunity to talk to other sufferers.

[Jinny]

DLE is aweful..Lupies,,you must all ask your doctors for Fexofenadine Hydrochloride,,,the mother of the Antihistamines!!!Make sure the chemist don't try and fob you off with cheaper versions,,this stuff realy hlps in the summer months!!I could not be with out this from April to October every year,,,even when the sun is mild,,take it every day,,you will see it helps such a lot .