Return of the Lupus

By AlysonP

1 min read

After suffering through extreme fatigue for many years, being told I was lazy, believing I was lazy, being diagnosed with pleurisy, migrating joint pain, 100 other issues and lastly, being unable to walk led to my diagnosis.

Ups and downs with treatment

It was the day before my 40th birthday.

After 6 years of Immuran, Plaquenil, methotrexate, and steroids, I was able to take a medication vacation.

Unfortunately, after 2 years 💥 bam, back on meds. :(

Why did my lupus symptoms return?

It’s been a nice break! My daughter asked me what have I done differently that may have induced it. I thought it was a very good question and couldn’t answer it.

I look forward to reading your stories, learning tactics on controlling flares, and hopefully answering my daughter’s question; why did my lupus return?

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?

Share my experience

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Ava Meena Moderator & Contributor
<inline-mention username="AlysonP" user-id="4235650"/> I'm glad you got that break! Sometimes there is no explanation, unfortunately. But you may find an answer by tracking your symptoms. There's a book, Despite Lupus by Sara Gorman, where she talks about how she meticulously tracked nearly every aspect of her life and was able to manage her lupus much better as a result. It could be worth trying if you're aiming for remission. I know I would love to have some years without my meds! Thanks for sharing with us. -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team
AlysonP Member
Thank you Ava. I will looking the book you referenced!
Chan Member
I am happy you shared your story and the part about fatigue resonates with me because it’s one of my major symptoms. Most days I have to tell myself that I am not lazy, my body is just not well and I need to rest.
1. GabbyFormica Community Admin
 Hi <inline-mention username="Chan" user-id="4249973"/>, Thank you for your support. Fatigue can feel so debilitating at times. It has nothing to do with "laziness!" Continue to be gentle with yourself and listen to your body's need for rest. You are not alone. -Gabby (team member)
Cazmarglom Member
I don't have a diagnosis still but ime experiencing all of the symptoms mentioned..fatigue inflammation in my joints leading me to be hardly able to walk . Rash and liaison's on my feet ..my bottom has a really bad rash which is spreading quite quickly now ...as for grieving the person I was I really relate to it ..IAM now 61 but been like this for a number of years it's only now anyone is taking anynotice but still won't say it's lupus....I feel twice my age I used to be outgoing and loved a good party and dance now I can barely get myself dressed up for a night out it's so much effort with the fatigue and pain.i just want a diagnosis so I can getynhead around it and not feel like a hyprocondryact.x thinking of you all your warriors.xxx
1. GabbyFormica Community Admin
 <inline-mention username="Cazmarglom" user-id="6620835"/>, I'm so sorry you are dealing with these symptoms without answers or a treatment plan. Getting a lupus diagnosis can take years sometimes. This article explains a bit about the necessary tests to get a diagnosis: <a href='https://lupus.net/tests' target='_blank'>https://lupus.net/tests</a>. Have you talked to your doctor about getting an ANA blood test, or being referred to a Rheumatologist to test for lupus? It might be worth looking into. You are not a hypochondriac. What is happening to your body is real! We hear you 💜 Gabby (team member)
Cazmarglom Member
Thank you for your support 😘😘