Here We Go...

[yellowflowers]

I'm new here, although I've been reading others' posts for a little while now. I need to tell you guys thank you for sharing your lives, as it has given me the courage and strength to accept my own diagnosis. I started showing symptoms when I was a child (around age six, I'm forty-four now). Through the years, I've been labeled a difficult/angry/hyperactive child, a child with chronic illnesses, a child with 'growing pains', a juvenile arthritic child, a child with sun sensitivity, a young woman with fibromyalgia..migraines..anemia..heart arrhythmia..pleurisy..debilitating virus infections..chronic fatigue..kidney complications..'depression'..'hypochondria'... I didn't get a diagnoses until I was thirty and that was followed with doctor after doctor and diagnoses after diagnoses and so many different drugs that I'm lucky I survived. One year ago, I got a solid diagnoses of rheumatoid arthritis and started on methotrexate, dmards, corticosteroids, and biologics. I ended up in the hospital with pneumonia and again with tumors in my breast. And I was actually getting worse (in small degrees) until I fell into a sort of lupus crisis. The malar rash came out, the fatigue, kidney pain and swelling, right sided heart enlargement, hyperthyroidism, shaking, and pain (omg, the pain). Went to a new rheumatologist who gave sle as the primary illness (with possible ra and sjogren's as secondary) and was taken off of everything and put on Plaquenil. It took about five months of the medication plus high doses of anti-inflammatories and then it all went away (well, mostly all of it). So, that's my story in a nutshell. Oh, it's been so hard. And I think that hardest part has been learning to accept this illness. I feel like a rag doll whose been tossed around so much her stuffing is falling out. I have some family support, but they are so confused, they don't know whether I have a cold or cancer. I've never felt so helpless, but there is some form of fragile grace. And I'm learning not to be afraid. Hopefully, a little light will shine on all of us as we walk a path that no one should have to walk. Hugs.

[Penguintaz]

Yellowflowers,

Thank you for sharing, it is awful to hear how you have suffered for so long! I'm glad you pushed through.

I hope this forum will gives you another place to feel welcome like it has done for me

[EOLHPC]

Hello yellowflowers...such a beautiful name 😊

I'm so glad you found us. Thank you for your story...am v much relating to it because my lupus was diagnosed when I was an infant in another country, but my mother & doctors didn't let me know...as I grew up I just thought I was more sickly than other youngsters. So, when I moved to the uk at 21, the NHS began to help me cope with chronic multisystem illnesses & emergencies...but took nearly 40 years to recognise the underlying lupus.

I ❤ your rag doll simile: i can definitely identify with that 😆! And also the "learning not to be afraid"! I think you are very brave!

Like you, I've got a new lease on life thanks to the brilliant True Detective consultant who figured me out...together, we've spent the past 6 years understanding my version of immune dysfunction & connective tissue disorder well enough to put together a daily oral therapeutic combined therapy treatment plan that has 63 year old me feeling more stamina, resilience & comprehension + less pain than I've felt since my early 20s. And NOW all my multisystem clinics are also able to help me more than ever before, because they better understand the causes run game my secondary conditions

I think there are lots of us in the world with early onset lupus going unrecognised till much later

Am wishing you every best wish & sending you a big gentle hug

🍀🍀🍀🍀 coco

PS my mother is alive & kicking...6 years ago when I told her I'd been diagnosed with lupus she said: But dear, you've ALWAYS had lupus! I said: what's lupus? I'd never heard of it! You can imagine, she & I have had a lot to discuss 😉...am very glad she's still alive & able to clear this up!

[Hidden]

Thankyou for your story. Its a long road. It continues to take turns, but stick with it and us.

[yellowflowers]

Hey all. Thank you for the kind replies. I feel that I need to share that last night (after a stressful event), I had a bad flare (flooded with pain and very tired). Morning brought kidney pain and joint involvement. So, I guess Plaquenil isn't so wonderful, but I still think it's a good and important drug. These autoimmune diseases are so complicated and illusive.. and they overlap so. It's no wonder the doctors seem to be as baffled and uncertain as we are. Again, here's hoping for the best for us all.

[misty14]

Hi yellow flowers

Thank you for your lovely post and welcome to the forum. I hope you find it helpful, certainly less lonely!.

So sorry to read how much you've been thru with seeing so many doctors and getting many different diagnoses and treatments. It can be such a long , hard road. I too am a similar age to you and I've been ill since I was a teenager!. I did get the growing pains label and Fibro when mine started but luckily over the years I've had one diagnosis of undifferentiated connective tissue disease which has stayed. Like you I've been on lots of different treatments and did have to come off them when moved to a new Rheumy locally!. It is a very stressful business. I hope the Hydroxy is helping you.

Keep posting , sharing and fighting. X