New diagnosed in august

New diagnosed in august

Hi my name is Dawn,diagnosed discoid lupus in august,,took em 3years to diagnose,and today with fybromyalgia!!Least i know why now till my tablets started too work why i looked like a scabby spotty lepar,,ha ha,,and now why my muscles etc give me constant pain,,was told 10years ago i imagined the pain,,what a lovely site this is i meant to say that first,,its good too know other people understand when alot round me dont!! p.s something went wrong with my profile picture,,ha ha thats not me,,oh my days

20 Replies

  • lol hi and welcome..i only just joined myself..the rash is crap..i have scars on my face and arms from it.. and yes its crap when the doctors dissmiss your auntie had another autoimmune disease and when she went to her gp she was told she was imagining it..6 months later she was dead leaving a 3 year old little girl without a mum..i understand it is difficult diagnosing A,I diseases as they can mimick other illnesses, but a simple blood test earlier on could of saved her :(

    oh and lol'in at your picture..i nearly did that with my 1st blog was a pic of me..but was acrappy one of my rash at its full glory lol

  • Welcome to the site...I have DLE, Fibro and ME/CFS, had it for 16 years now. We are all here to help each other along. If you have any questions as you start this journey of having Lupus, feel free to message me. I used to think it was in my head, because sometimes when all around you struggle to understand it, it makes you start thinking it is in your head. Welcome again and remember to stay in touch on the blogs, you will be surprised at how uplifting it can be to chat to the others...

  • My rash makes me stay at home, so tired of people looking at me as if they might catch something, think I am going to get LUPUS tattooed on my forehead with arrows pointing down.

  • Thank you both so much,at present the site here has a problem so i cant directly reply to you individually..firstly to purpleprincess,,how aweful about your aunt,absolutly terrible!!Yes my arms and legs are scarred my legs particulary bad,,the tablets ive been on got the spots down though,they eventually found my dle through skin biopsys.Thank you for your reply,and bless you,,pS IF Idont get that profile pic off soon il die of embarrassment,im rubbish with commputers,,il have to leave the job for my son,,lol.

    Hi Peter,many thanks for your warm welcome,,yes i agree,for years i was told i thought i was ill but but hey Dawn,,your not,,i was diagnosed with livedoreticularis 5years ago,,cardiovascular thing,,then spots all over,,for 2and half years,,people used to shy away from me like i was a lepar,,then they said with all symptoms its lupus,,today to top it of fibro you understand me.Im still bit annoyed bowt all this but hey ,,we gotta all try and live best we can.Again many thanks and apologies for weird profile pic ,,ha ha ha.

  • That is a much better profile pic....

  • Peter,,,hey i know,,you need a tablet called quinoric,,il get the full name,,i was a leper .arms legs back hands feet,for 3years.they went into remission once for a month,,even coverd in spots thru winters,,now the spots an arms gone,,mostly on legs but left alot of scarring..i just gratful they sparedmy face. good luck.

  • im also face book Dawn parkin ward,,friend me guys :) x

  • Also on FB, Peter Woolnough, profile pic is the same as here, all welcome to friend....

  • They have tried 26 different treatments now and not one bit of success, I am referred to as the Difficult patient, they are going to start me on Thalidomide soon and I think that is the last resort. So holding thumbs for it to work as they have basically said this is the last resort, have to jump through loops to get this medication...

  • Is jy tweetalige

  • I really hope they give you these Thalidomode pet!You certainly sound like you had a rough deal.

  • Thalidomide is also going to be rough, I have been warned already, but it is worth a try....

  • Hope it helps you Peter, keep strong

  • Thanks....hope so too.

  • Hi dawn64, welcome to the site, we're all here for you & we understand, lovin your pic

  • Thank you trace,,is the pic of me and my old dog(lost her in january) i ask cos had a prob with profile pic,,lol dont ask you dont wanna know,,ha ha.Thank you so much for lovely welcome,,i also face book as i told peter

    dawnparkinward xx

  • i see nowi reposted my pic is me and not a nacked from the waist up man!! ha ha.God this typing killing my shoulder and arm now though,,need a break i fink ;)

  • Its a pic of you with a dog, you changed it, look after yourself x

  • Thank you,,hey you too hun.x

  • dawn and peter..sent you both a req on fb :)

    lucy x

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