Help me daughter has Lupus SLE. We all thought it would be Fibromyalgia??

Gutted, so upset, my beautiful daughter of 29 yrs old has just found out she has SLE Lupus.

At 15yrs old she had a terrible rash across her face and was diagnosed with Discoid Lupus and was explained to about it's a skin rash which comes up now and again.

It did just that, when she was stressed over school, boyfriends, looking for a job, she used to get the lupus rash, and then it went down and disappeared.

But, in the last year or so she got terrible pains like me, in her legs, aching etc, her GP gave her codeine and paracetamol nothing else.

The pain continued. I said 'you'd better go back and see your GP again'

Still nothing strong pains in her legs, headaches, bright sunshine hurt her eyes and she battled on.

Eventually I went with her to an appointment and I was quire short with him. I said how does she have to wait to see someone? He explained she choose pain clinic!

What for I shouted, she has no reason for pain?

So then and there, he changed for her to see a consultant.

Today she was given the bad news she now has full blown Lupus SLE.

It's an anti human ' disease. It starts to eat away at the heart, Kidneys or worse The Brain.

I'm so upset I could cry. Well I have cried, loads. Worst problem is she getting married in 6 weeks.

Any advice for me to give to cheer her up?

I feel so ill now, I have Shingles, she is always there for me xx

Lottieonline 😪😢😓😓😓

12 Replies

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  • I'm so sorry to hear about your daughter. I looked at your profile and see you also have FM.I can only suggest you let her know YOU will be there for her (that means alot) when it comes from a mom.You have also experienced some of what she will go thru .I think this should be a great relief to her, it is to me as I do have my mom even though she don't have FM (thank God).I wish you and her the very best. Peck🌹

  • Thank you Peck, she and I really thought it was FM

    We are SO shocked!

    Thanks for your reply.

  • That's a hellish diagnosis. It's no wonder you are so upset.

    All you can do is let her know that you love her, that you will be there for her and that you will help as much as you can.

    Her wedding will give her and yourself a focus while your brain digests Lupus as a diagnosis. You have to allow your daughter and yourself to grieve, as accepting such a diagnosis is life changing.

    If your daughter has the fight in her that you have ten she will take on the battle head on. Just support her. My best wishes to you both 🐸

  • This is awful news for you both. Did you know on Health Unlocked there is a specific forum for Lupus sufferers. Hopefully she will now be getting appropriate treatment. My friends daughter has Lupus and has successfully had 5 children so it is not all doom and gloom. I would be a liar to say every day is plain sailing but as we know that is the same with fibro. Sarah also managed to hold down a job, she has to be careful of course and take advice from her GP and specialist but is now living quite a normal life.

    When you feel a bit better and remember shingles itself knocks you for six look up everything you can on the condition from reputable sites as knowing the facts can take away alot of the fear factor. I am not saying it is the site to go to but one that springs to mind is Lupus UK as if you an talk to people in the know it can help. They do many publications and produce a magazine that has good articles about it. She has a wonderful Mom who will I know do everything in her power to support her and I feel that is half the battle. Take care and let us know how you are both doing.x

  • I have had Lupus for the past 28 years, 10 years undiagnosed so I know the shock of a diagnosis but also the relief that something can be done.

    Rest assured that now she has had it confirmed she will get treatment that will relieve her symptoms and reduce the effects of lupus on the major organs. She will feel a lot better once she is stabilised and follow sensible rules like staying out of the sun and pacing.

    There are two communities for lupus on HU, both are very useful. Please send off for all the leaflets you can as these will give good, up to date information. Beware of older books and publications as these are a bit doom and gloom. So much research has gone into auto- immune diseases and the outlook nowadays is much more positive.

    I don't know where you live but if you contact the lupus communities they will have a list of lupus specialists which obviously is better than being treated by "ordinary" rheumatologists.

    Hope the wedding plans will go okay and you will all have a lovely day.

    You are welcome to pm me if you need any help.

    Xx

  • So sorry to hear this. My mum had SLE for nearly 50 years and I was briefly misdiagnosed with it. The health unlocked lupus forum is very good if you want to join. I found it very supportive and informative the time I was there. I hope your daughter realises that she can still have a good life and to still follow her dreams. On the lupus forum you will see what I mean by that. There are local support groups you can join too. Good luck. :-)

  • You were misdiagnosed with Lupus. That's terrible!

    What was it u had instead then

  • Hello I just want you to know whilst having lupus isn't good I have sle and fibro and poss Parkinson's.

    Sle is treatable and with a good consultant can limit organ involvement. So please there is hope and optimism. I climbed mountains with sle it's the fibro that took my mobility.

    Thinking of you both. Xx Bea

  • Thank you Bea6

    Your email has given me some hope, and for that I thank you

    Lots of gentle hugs

    Lottieonline

  • I am happy to chat anytime. I have had sle since 20 I'm now 50 ! I had three lovely children and successful career so please don't despair :) just make sure you get a good consultant it took me many years to find one that worked well with me !

    Sending lots of supportive hugs

    Bea 😀

  • Hi Lottieonline

    I am so genuinely sorry to read that your daughter has Lupus, and I sincerely hope that they can control this for her? I have pasted for you both below the NHS Choices cache on Lupus treatments, so I sincerely hope that you both find this useful my friend:

    nhs.uk/Conditions/Lupus/Pag...

    I want to sincerely wish you both all the best of luck, and please take care of each.

    All my hopes and dreams for you

    Ken

  • Thank you all for replying to my post.

    Much appreciated

    By the way! I've been told, I might not have FM or have it and Polymyalgia

    Waiting for it to be confirmed.

    All I know is my blood count came back to GP

    Differential white blood cells count

    Report borderline.

    Total - White blood count 6-7 (4-11)

    I have no idea what any of it means but GP put me straight onto Steroids but had to stop on day 3 because of very low mood. She couldn't take a chance. Anyone shed any light?

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