Recently diagnosed with autoimmune disease - looking for support
Hello everyone! I am very new to the forum and the diagnosis.
Not really looking for answers but for similar experiences and some support as people who do not experience these type of diseases do not seem to understand the level of disruption it can bring to one's life.
Just to briefly tell my story:
Jan 2022, after a brief but bad cold (not covid), I started experiencing body aches. They were mainly chest pain (collar bone area) and lower ribs, sometimes in the lower back. Been to many doctors, been to the ER several times and experienced high levels on anxiety. I was mainly dismissed with "it's stress, relax and meditate", and suggested that it could be depression. My pcp decided to do blood work for autoimmune diseases and ANA came back positive so sent me to rheumatologist. Here, they did more blood work but everything came back normal (except for ANA). So they put me under the "umbrella" of Undifferentiated connective tissue disease. I was on low dose prednisone for a month which did miracles with my pains. Then after that I started plaquenil everyday (no more prednisone) and been taking it since April with no more pains (maybe once in a while, but manageable). However last week I started waking up with terrible left shoulder blade pain, as someone was stabbing me in the back. Experiencing hip pain on same side, then the ribs pain started again yesterday. Doctor gave me prednisone "as needed" which for me was everyday for the past 3 days. However, this time, it seems as it is not working as it did the first time. Same dose as before, also still on plaquenil. I am going through extreme anxiety since I do not understand how the pains can come back out of the blue, and how the medicine that have worked so far, they are not working anymore.
I was wondering if someone who has been dealing with autoimmune diseases has some insight into managing these flare ups. I did not expect them to come back, but then again, I am new to this and looking for some support.
Thank you to everyone who would like to share their experience.