Newly Diagnosed Lupus SLE

Chants

Hi All,

I'm new to this forum.
Just would like to introduce myself and say Hi.

A few weeks ago I discovered indented lesions on my scalp. Seen a dermatologist and as a result of a biopsy it was confirmed, Discoid Lupus.

For years I have been suffering with severe joint pains, swollen joints, fever, bad headaches and extreme fatigue. 1 Year ago ANA test was positive and again recently.
A few days ago I seen a rheumatologist and diagnosis was confirmed as Lupus SLE.

I have extreme anxiety over and above the other symptoms, but have recently been feeling depressed. Since the confirmed diagnosis, I am uncertain as to how I feel. I guess I am still trying to digest and process it all. I am very afraid and concerned as I have no idea what is to come.
I start my treatment tomorrow, whilst awaiting further kidney blood tests.
I feel frustrated, angry and just miserable. I guess I feel defeated. I lead a very fast pased life and have an extremely stressful and highly pressurized job.
I have no idea how or if this sickness will change my life.
My greatest fear is that my children will need to take care of me.

Anyone else out there that can relate to my story?
If so, how have you managed to move onto the next step overcoming the fear and having a positive outlook?

Many Blessing to All.

[Deleted User]

Dear Chants,

Your post touched a chord with me, taking me back to my early diagnosis days - the fear of the unknown was the thing, my imagination did the rest. You now have a diagnosis and treatment will start soon. That’s very good. You are also very strong, you have children (full time job 24/7), you work in a stressful situation (but sound like you enjoy it), you manage your anxiety (also 24/7) and you have taken the possibility of depression on board! You can do this, honestly!

Now information is key, this is our lupus booklet

https://www.versusarthritis.org/about-arthritis/conditions/lupus-sle/

Remember most people are well controlled with drugs, remember your diagnosis has come early and you have a team around you to catch any changes really quickly, there are drugs to help.

In many ways eg treatment and many symptoms are the same as for other inflammatory conditions so post on here any questions, worries, needs you have and we will help.

Here you can find information on any drugs you take
https://www.versusarthritis.org/about-arthritis/treatments/drugs/

You might like to chat to our helplines, here’s the number
0800 520 0520 they are open from 9.00am to 8.00pm Mon - Fri

Take care
Yvonne x

stickywicket

Hi Chants and welcome from me too. I have RA (and OA) but, as Yvonne says, we all have far more hat unites us than divides us on here.

Of course you will be anxious with a recent diagnosis. You'd be superhuman if you weren't. It's all a step into the unknown and a bit scary especially if you've enjoyed good health up to now. But actually, I think your children will be your greatest assets in enabling you to move on and be positive. My RA was truly awful when my two were young because, back then, there were no disease modifying meds. There were many days when I did whatever it took just for them. They needed to go to school, eat, have clean clothes etc and, because of the lack of medication for me, my husband was the only one of us able to work. I did it and now they're all grown up with sons of their own.

I think my arthritis made them more resourceful. They're both good cooks (I was never more than a basic one.) They're both very kind – but never patronising – to anyone with a disability and yet they expect them (and help them) to join in with everything. They are both demon wheelchair pushers I have done speed wheelies over rickety, sideless bridges :shock: and had my pusher's hands waved in front of me on downward slopes We have lots of fun whenever we're together. (I now live a few miles from one: the other is in Los Angeles and we visit every year.)

I think if you try too hard to hang on to all aspects of your current life lupus will bite hard and make you very miserable. If you can accept it for what it is, and help your family to accept it too - as it will modify their lives too to some extent - then you can start to live with it and enjoy life. Some things will probably have to go over time but learning to prioritise is a very valuable life skill.

And we'll be here to help

SusiM

Hi Chants
Sorry to hear about your diagnosis and l wish you all the best with your treatment. I was recently diagnosed with an inflammotory arthritis (they dont know which one it is) and l can fully relate to the sorrow of finding out you have a chronic condition and the worry about what the future holds. Its so normal to feel this way and time does a lot of healing as you begin to accept you have this illness and start to deal with it. Things about my lifestyle have changed and lm still struggling with it. My new challenge is seeing how l can live my life to the fullest l possibly can with my altered set of capabilities. Reading peoples stories on this forum has been helping me to be more accepting. Also telling myself l dont know how my disease is going to pan out in the future (it might not be as bad as my worst fears) and being grateful its not terminal has helped.
Warmest wishes

dreamdaisy

Hello, it's nice to meet you and I am sorry you have had to find us. My diagnosis came as no surprise as I was born with an unhappy immune system so my life has been compromised since childhood: so what? You learn, you adapt, you make the best of what you have when you have it and learn to deal with the times when you don't but it's easy when life has always been that way. Far, far harder for you as life has not seen fit to prepare you in any way, shape or form for a different way of living.

I began my auto-immune arthritis back in 1997 when I was 37 so am well ahead of you on Decripitude Road (we're all travelling along it, another name is life) but some begin to feel the privations of a struggling body far too early. Personally I am having a very tough time at the moment so cannot offer much in the way of cheer but it is good that you have a diagnosis because that will make medical thinking clearer. What treatment are you starting? DD

frogmorton

Hi Chants

Welcome to the versus arthritis community from me too

I am so sorry to hear your diagnosis and remember too well how I felt when I was first 'diagnosed' (no name then just inflammatory arthritis).

I thought my life was over, wouldn't plan anything; work or holidays even nights out. It's a grieving process you are going through - for the life you had planned and expected ahead of you. Keep talking and getting informed (stick to reputable sites like this one NHS etc) here is good talk to us lot we get it and won't get upset as family might.

It took time, some medication and some adjustments along the way, but I can honestly say now that I am doing just fine. I do go on holiday and plan plenty life is absolutely ok

Take care

Toni xxx