new diagnosis

[Nikh88]

I’m hoping someone can help me. I was diagnosed with lupus in August. I’m under a consultant but don’t see him til march. I rang his PA today in tears to be told he’s on annual leave. I’m the first one in my family to have been diagnosed with lupus. I’ve been in and out of hospital since last July which started with embolisms and then the lupus and then I was told I have SLE (is there a difference?) I’m chronically exhausted everyday. Even the littlest tasks wipes me out: I’m only 36 and I feel like my life is over. No matter how much sleep I get I still feel the same. I’m nodding off sitting up: I try and stay active but I’m then in chronic pain. I feel like I’m stuck in this cycle with no help, no-one understands and it ruined my relationship with my partner and now I’m back to being isolated.

My family try and be supportive but just lately I feel like I’m just biting their heads off because in reality they don’t understand. My friends don’t understand. Please can someone help. Or is it going to be like this forever!

[StriatedCaracara]

Things get a lot better on treatment. The main thing is you now have a diagnosis that explains your symptoms.I found it took others a while to understand but they did with time.

Local groups are good. If you contact Lupus UK they can put you in touch with one near you. Some meet on Zoom so even if not nearby it is still possible to attend.

Thanks for posting. Welcome to the forum. You will find many here with similar experiences.

[Ilovegramsjuice]

Hi Nikh88,

I know life feels so out of tune and with no control. Once you start with medications that can help with the emotional state Lupus can throw your way, life will come easier. Yes, this disease is a lot to come to terms with. So many questions and symptoms go along with Lupus. I was about your age when my Doctor finally gave me the news I gave Lupus, chronic Fibromyalgia, sjgurns, Raynouds, and a general anxiety disorder. People who do not understand or recognize these diagnosis and symptoms that go along with it think it’s all in your head. Don’t listen to the uneducated who know nothing about this disease. Listen to your Doctor. This disease affects everyone differently and it’s not a one size fits all.

Just know you are not crazy and your symptoms are real. Educate yourself about lupus and the more you learn, you can educate your family this is real. Because it is!

[Danimccrea in reply to Ilovegramsjuice]

Yes I agree strongly with educating yourself on lupus and your family so they can try and understand a little of what your actually going through and dealing with. Xx

[Danimccrea]

Hello lovely I'm also 36 I have lupus Nephritus and a few other things going on, I completely understand how your feeling you sound very much like me, it's one of the hardest things to accept and actually deal and live with, the symptoms are any 1s worst nightmare and it's pretty much like living in hell, the only people that truly understand how your feeling I suppose is some one with the same disease, it's tough and one hell of a fight and some days you can see no light at the end, but do stay strong my lovely it is a long road to treatment I've had a 3 year flare constant with no break from the pain but I've just had treatment ruxitab infusion via drip and thing seem a little better, I feel that once you accept things your mind gets a little relief and you can start moving forward there are lots of great people and advice on this forum who give you hope that things will get better and you do learn to live with things and hopefully they will try different treatment for you until you find the right one for you, I've tried lots of differnt things it's real trial and error as thete isn't a great understanding of lupus and it seems to be different with each and every one of us. Hang in there and stay strong your allready winning by getting through each day with this awful illness be kind to you're self 💜 and do reach out for support 😊 take care 🙏 things will get better eventually xx

[Carcrashgal]

Hi, Nikh88, and welcome to the Forum, where you’re never alone. Lupus UK has an absolute treasure trove of information about every aspect of Lupus, and that combined with the wealth of knowledge amongst us all will, I hope, be as big a help to you over the years to come as it has to me and countless others.

We’re all happy to answer questions about particular aspects and share our own experiences, but I’m going to start with just one thing. You’ll hear us talk about spoons a lot; this is why. I hope it helps explain a bit about your fatigue and how to start dealing with it. Good Luck

butyoudontlooksick.com/arti...

[Jerg]

sorry to hear in my opinion it is not always like this once you are on the right medication things get better. I got worse when I started taking the medication but was told so by my consultant however I felt better after it started to work

Good luck

[steve61]

Medication helps but the flare up don't!! Along with all the side affects!