WHY ME

[Naz2005]

Hi i have recently been diagnosed with LUPUS (SLE) so many visits to the doctors who said i was just a whinger & sat there in tears with no help over 1 year ago my hair loss was worse then usual & i was so tired because im also anemic & diabetic they thought that was the reason.

[Loopyloo43]

Hi sorry for your struggle it seem it’s a common issue for many of us. But glad you have found your dx and hopefully get the right treatment so you can feel some what better. Over time sending you a hug keep your chin up 😀😀

[Naz2005 in reply to Loopyloo43]

Thank you for your support x

[Wolf_1]

Hello Naz2005,

Please, please try not to let this send you into a downward spiral. I’m so sorry to hear of your hair loss and I know you are going through hell at the moment but the more you get depressed about the diagnosis, in my experience (15 year veteran of SLE, Fibromyalgia, Kidney failure and depression to name just a few of my ailments) you could bring on a flare of your SLE. I know it’s easy for people to say you will be alright but the thing is you could be. SLE is now well controlled with various drugs, and yes some drugs have side effects on people and some people don’t get any! The best way forward in my opinion is for you to get as much literature on SLE as you can( not on the internet as the internet often gives the worst case scenario) read it, ask your GP or rheumatologist anything you don’t understand and then THINK POSITIVE!!! I know you will think I’m talking garbage but trust me it really does help! It really is not the end of the world! And don’t forget, you have plenty of people on this forum that will always be there to support you all the time! You are not alone in this and you never will be!

Good Luck and good health,

Wolf_1 🐺🦋😴💤

[Naz2005 in reply to Wolf_1]

Thank you for your support as you must be aware at times like this everything just seems like words & need a miracle x

[Lily77]

Dear Naz, welcome to this friendly and helpful forum. You are very much not alone in experiencing a long and difficult path to diagnosis and you are to be congratulated for having held on in enough to be, finally, successfully diagnosed with lupus. Many of us know exactly the courage and tenacity that this takes. It is a major achievement. You are also not alone in feeling overwhelmed and down - it is a common side effect of lupus on bad days and so soon after diagnosis and you should know that it is the lupus, not the real you. I also experienced significant hair loss and it really dented my confidence when combined with everything else BUT it grew back once the lupus symptoms were better controlled and is now as soft and abundant as before. So I wish you all the very best for responding rapidly to your meds. Above all do not hesitate to reach out when feeling low, as many of us have been there ourselves and understand that it will pass. With a big hug and very best wishes Lily

[Naz2005]

Thank you so much for your support i also have alot of other underlying health issues too 😥😥😥

[eekt]

That's a terrible thing you've been through, many of us have, there is so much support here! It's a life-changer! 👭🤝💪

Some folks talk about a grieving process that comes with a new diagnosis, and grief comes in seven stages.

I lifted this from the net: 'You may rail against fate, questioning "Why me?" '...that's Stage 3. Stage 5 is the upward turn. Keep posting and we'll help you through Stage 4 and get you to 7. Be strong, you're not alone xxx

[Cas70]

Please Naz ring the Lupus Help Line and talk to someone. There are support groups you can go to. I never thought I would join one, but my goodness they help. So does this. I have lumps and bumps, eczema, massive hair loss ........ it is so depressing BUT eventually you come out the other side, honestly. As eekt said - you are not alone. Keep talking