Finding Community When You Don't "Look Sick"

Hi, I'm new here. Nice to be in a group that can relate to all our symptoms!

How my lupus symptoms started

It started 1 year ago with dry mouth and shortness of breath.

I had a CT scan of my lungs and had GGO (ground glass opacity). My PCP thought it was from asthma and referred me to a pulmonologist and told me to discontinued up meds that may cause dryness.

Getting my lupus diagnosis

I was also having lots of sinus problems which my Dr said were allergies. I had to stop Zyrtec and prescription nasal spray too. I saw the pulmonologist, did the breathing function test, and it was normal.

He had me do bloodwork and found RA & borderline lupus. He then referred me to a rheumatologist. He did a lot of bloodwork! At first, I tested negative for Sjogren's.

Managing symptoms

He prescribed me two different dry mouth meds, which did not work. I take all the Biotene products, xylimelts, etc.

Later he said CTD and probably Sjogren's. So he put me on Plaquenil. Been on it for over 6 months, and haven't noticed any difference. It's so frustrating!

He prescribed me naproxen and Flexeril for my back, which helps a little. I joined Sjogren's and lupus support groups on Facebook which has been extremely helpful.

I still have to get CT scans of my lungs every 6 months. My rheumatologist thinks it's autoimmune-related. I got 2 books on both Sjogren's syndrome and lupus. They are helpful too.

Support makes a difference

I don't "look sick" so my family thinks I'm exaggerating, which is hurtful. My BFF has been my rock, Googled everything and ordered supplements and vitamins for me and a humidifier too!

I hope to connect with others and hope to help too.

I appreciate you taking the time to listen to me! Big hugs to you all!

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