Newly Diagnosed

[Vonnie80]

Ive just been diagnosed with mild Lupus! Im currently feeling confused! Ive been in a lot of pain for 2yrs!!

The consultant was very matter of fact! He emphasised the word mild and I'm now feeling very unjustified for ever having complained about pain!! Life for the past 2yrs has been hard i had a new born and at times couldn't even hold him, the simplest of

tasks at times were hard to do!! I brought my partner with me when i got my results so that he could understand that i wasn't making this up and that at times i would need his help more!! Yet i came away from my consultation feeling like i had exaggerated everything!! Which i know i haven't yet have that doubt!! I was given hydroxychloroquine tablets to start taking!! When I read the leaflet it said your doctor should carry out an eye test b4 you start taking them so that over the years they can monitor your sight to make sure it hasn't been affected!! He never did this with me nor was i given any info on the condition!! There was no explanation of what would happen next if anything!!! I asked would these tablets take away the pain ect!!! He said yes and that the symptoms would stop!!! I guess what i really want to know is this true and also am i alone in feeling like this?? Thanks x

[T3KAO]

Dear Vonnie80, I'm about where you are the other two years down the line. I was diagnosed a couple of years ago and put on same meds. After what seems like two very quick years have passed and quite a few med changes I am still on the hydroxychloroquine, I did stop taking this as a protest at christmas as some of my family still think it's all in my head!!!!! sadly I am paying for that now as almost feel like back to square one!!! The moral of that story don't stop taking the meds, they really do help. I now have sjrogrens so please if they suggest getting eyes checked do this. I am under addenbrookes and have a special lupus nurse who is brilliant. Do you have a specialist nurse? It does get better, I still have little flare ups but know now how to control them.

[Vonnie80 in reply to T3KAO]

Thank you very much for your advice!!!!

Im currently in limbo!!! Im going to pay my GP a visit in the morning for some advice!!!! Im now to wait on my nxt appointment which will be in 3mnths!!!! My Rheumy never mentioned a thing about a nurse although my GP told me before that i would have 1!!! There was no explanation of what happens next from the rheumy it was just start taking these and come back in 3mnths very cold and unhelpful i wasn't given any info!!! It was so overwhelming that i just left but next time ill b ready for him!!!!! Im not prepared to just be a number!!!! This has been controlling my life for 2yrs now!!! Time i take control!!! But i could have got up and strangled him when he said mild and my partner was in the room and i really needed him to understand the effects it has on me and at times how the simplest of tasks could be exhausting!!! Thankfully my partner and i have talked about this after!!! I was so angry at the rheumy for making it so matter of fact!!! It a good job my partner had dod a little research of his own!!! Now im gonna take control and my life back!!

Thanks for ur advice its very gratefully received!!! x

[sharon53]

Hi I am new to this site aswell,

I was diagnosed with Mild SLE Lupus about 12 years ago no one told me anything either I thought I had Arthitus it was only when my GP told me that I new that I had lupus. I am also on Hyroxychloroquine don't stop taking them they really do work. I have a check up on Monday morning at the Hospital. They did not do an eye check up either and I think they should do this at the hospital every year but they don't I do not have a nurse I have not been told of this so this is new to me.

[teaparty]

Hi Vonnie80, I know how you feel, my rhumy deosnt seem bothered at all, im in pain all the time, I do see a nurse but at my doctors not at the hospital, they didnt give me an eye test either, if you go on lupusuk they will send you some advise, I hope things are sorted for you x

[Hidden]

Hi Vonnie80

I am sorry you were left feeling this way. I think that it is possible that the medics get so used to dealing with cases of the disease that have severely affected patients that they forget the immense impact that being given a diagnosis of a chronic disease can have. They may believe that saying to a patient that something is mild is reassuring. However it is well documented in the lupus literature that mild does not mean insignificant and that joint pain and fatigue are often debilitating in the mildest form of lupus. So my advice is to view the diagnosis is a validation of your experience over the last 2 years. Get as much literature as possible and pass this on to your husband and family. The book 'Talking About Lupus' by Triona Holden and Graham Hughes is a really useful book to read and then pass on to your family.Take the medication and keep a diary of your symptoms. This will help you to map any factors that make it worse or better. Use sunscreen all year round. Keep healthy and try to exercise. I got my eyes tested before starting the Hydroxychloroquine. I paid for it but check out if you are entitled to a free check. I believe some areas do offer this. Check in with this site if you have any questions, grumbles or successes to share. Everyone here is able to share your journey. x

[misty14]

Hi Vonnie 80

So sorry about your diagnosis experience. Consultants don't realise how they can come across and how it affects us as patients! Your Consultant should organise an eye check for you at the Hospital so you should ask him in 3 months time. I hope the drug works soon, it can be good for joint pain. Hugs X

[Slowmo]

Hiya, I remember feeling exactly like you when I too was diagnosed with 'mild' lupus, I think the choice of wording is poor and it only refers to the absence of organ involvement which is 'severe'. i also left my diagnosis appt feeling awful, my partner was with me and I remember questioning my sanity thinking if this is 'mild' then why am I so ill? Is it all in my head? Well, it isn't and you're no different to others with the same diagnosis. As for the eye check mine wasn't arranged for me, I booked with my local optician who also gave me an 'amsler' chart - I keep it on the inside of a kitchen cupboard and check once weekly as the meds can cause macular degeneration, but this is rare.

As other's say, get some literature to read for yourself and family, take it easy as and when you need to (difficult I know with children) and try and stay as healthy as you can.

If you need it (and I really did!) my GP offered a 6 wk sessions of counselling to come to terms with the diagnosis, it really did help too, as I was pushing myself to live a 'normal' life and ignore my illness. Whilst this is a tough time for you being on this site will help to talk to others who understand and also maybe look on the national lupus website for a group in your area, this too is a great support.

Take care