SLE: Hi I have been diagnosed with Lupus for... - LUPUS UK


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lucy-may profile image
10 Replies

Hi I have been diagnosed with Lupus for 18months although have been ill for many years. I only found this sight a few days ago and it has become my lifeline. People talking openly about Lupus has made me see things in a completely different way. Thank you all for all the information, and hope l will be able to add information to this site which will help others. I have never talked about Lupus with anyone so it will take time for me to write and share my experiences. But l will.

10 Replies
teecayc profile image

Well done for making the first step then :)

Kind of become my lifeline too, you know there are people out there somewhere, suffering too but it hits home when you actually read about it. I think it's a brilliant site to get support from and also offload! So glad I found it!

Hope you find it as helpful.

Take care.

Jude65 profile image

Its good to hear from you lucy-may. I find it liberating like you to be able to support and learn from each other, after all the medics don't have all the answers.

Keep as well as possible

Jude 65


Pkaur profile image

hi lucy-may

I'm glad you feel you can start talking about lupus, it took me a while to talk about it too. I felt nobody understood what I was going through until I wrote a piece in the News and Views section of the magazine talking about myself and made a few pen pals who had similar experiences. It will get easier in time, stay positive and take your time.


Barnclown profile image

Hello there

Your v brief post says it all, in a way

I agree: Good to know we're not alone, thanks. My diagnosis began as a toddler and was confirmed in my teens but my mother who distrusts doctors, kept it secret from me & everyone else: never talked about it! Until last February when my first NHS rheumy looked at the worsening symptoms in my hands & feet and started me on the road to diagnosis at 57: SLE, mixed connective tissue disorder, sicca syndrome....then my mother told me: but you have always had lupus,

So, all these years of being unwell she never mentioned the lupus diagnosis....and all the specialists treating me over the decades for mostly secondary inflammatory conditions with never talked about lupus....although yesterday the nhs dermatologist I was checking in with about my lichen sclerosus told me her small local hospital had done 1(1!, ha ha: we all know it can take more than one test to diagnose lupus) yes 1 blood test on me for lupus but it was negative (ha ha!) they talked to me about this very good dermy (who has always seemed and still seems a very humane and skilled professional) is totally talking to me about lupus and liaising with my rheumy, who is at a bigger regional hospital, about my treatment. But...wait for it....when I told this dermy that this wonderful auoimmune expert rheumy had spent 2 hours taking my history & examining me with loads of blood, nerve, heart, lung baseline tests and immediately put me on 400mg plaquenil daily, this dermy said: how can any of us in the NHS have time for that? And later she said: of course rashes etc can happen for many reasons other than lupus...I said, yes I know. And isn't part of the diagnosis secret: take time to....communicate, really listen, and collect information and... Talk.

And....this is exactly what I have been trying to do with all these specialists & gps all these decades...but they just told me all my symptoms are normal, take the Meds and look after yourself. Ok, maybe over the decades I've become more skilled at presenting to specialists, but also, even with the life- threatening flare ups i've been successfully treated for without any doctor realising lupus was there, by now generally my symptoms have gotten so bad it's truly staring them in the face so they really really have to talk to me about it, I guess

So, today is the start of lupus awareness month, and today is my 58th birthday...I'm going to my lupus support group meeting. And my wonderful husband who has put up with my medical odyssey for over 25 years has set up an annual contribution to lupus uk....and, finally, my friends and family aren't treating me like a hypochondriac...and we are all....talking about lupus, and especially joking about....lupus!

Sorry if I sound a bit overwrought, but I so totally empathise with you, and, reading between the lines of your very brief post: it isn't hard to imagine how vvvv much you about!

I send you all the very best wishes for a healthier life after diagnosis

Take care, keep calm, carry on....and keep talking about it, and laugh as much as possible

lucy-may profile image
lucy-may in reply to Barnclown

Thank you so much for your reply, I can fully understand not knowing for so many years. It was a very similar story to my situation, as my illness was called everything but Lupus. Although only being diagnosed for 18 months l feel l have had Lupus for 30 plus years. Happy Birthday. hope you had a great day.

hi glad you have joined hope hope you find some tips from others helpful

Paula1968 profile image

I was diagnosed in 1986 with SLE and this is the first time I have talked openly about it on a site. I have already had lots of useful help like insurance company's for holidays and Ive even started on the road again to try and get life insurance bacause of this site I'd given up ont that one I've been turned down so many times).

My husband struggles with the SLE diagnosis I have and I feel he cant understand what I am going through although he tries god love him. This has become a bit of a release for me, hope it is for you too.

Lucy86 profile image

Hi, I was diagnosed with sle a few months ago and have felt quite frustrated by the fact that I didn't have anyone to talk to who also had lupus and would understand what I was going through. I found this website yesterday and It has really helped me sharing some of my experiences so far and reading about other people and knowing I'm not alone.

Sue2803 profile image

Hi, I was diagnosed 3 years ago having had problems for years and years, terrible migraine, treated the migraine, skin problems, creams given, blood problems, just ignored, joint and muscle pain, pretty much ignored, multiple miscarriages, ignored, tiredness, told to get over it. None of this was put together, everything was treated individually. When I finally got the diagnosis, purely by accident, it all fitted like a jigsaw and was actually quite a relief. Last few months, started losing my balance and falling over a bit, fell down the stairs and broke my arm, fell off my partners motorbike (it was stationery at the time), Spoke to rheumy and he jokingly said take more water with it!! Not much help really. I find it really difficult to talk to my partner about sle cos I dont want him to think I am always moaning, he suffers with depression and I dont want to add to it. Am finding working more and more difficult. Am a nurse and work 12 hour shifts, cannot afford to cut hours, but feel like crying when I finish work because everything hurts and I dont know what to do with myself, having a job to even drive home. Feel very alone sometimes, but having found this website yesterday, feels like I have an understanding friend. Thanx

lucy-may profile image

Hi sue, I can fully understand all you have said, its a very similar story to mine, Please dont feel alone, l felt the same until l found this site, l read all the stories and realised l am not a freak, there are so many people with the same syptoms and lifes problems, l no longer feel alone, its great having people like yourself to share the ups and downs. I do feel sad for you having to work, it must be so hard, I had to give up work, l really miss the company and friends but the last 2 years l became so poorly l had to give up. The only thing that helps me is that for every bad session of Lupus l have, l know l will get the odd good day, which l live for.

I do try very hard to say positive but its not easy, so when l feel down l get on this site and read all the bloggs and it does help. From an understanding friend, x

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