Chronic Fatigue Syndrome, Chronic Pain, Health, Sjögren's Syndrome

Big Roller Coaster since Sjögren’s Diagnosis, by Rachel Nicole

Chronic Illness Warrior, Rachel Nicole, suffers from Sjögren’s Syndrome. Rachel has agreed to add her face and story to Faces & Stories of Chronic Illness. I am so grateful that Rachel has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Rachel by following her on Instagram.

Big Roller Coaster since Sjögren's Diagnosis, by Rachel Nicole
Big Roller Coaster since Sjögren’s Diagnosis, by Rachel Nicole

My illness started in late 2017. It began with severe upper abdominal pain, which doctors’ thought was my gallbladder (later found out it was Hep A!) After having my blood drawn, it was noticed that my protein was repeatedly extremely high. My doctor at the time used a protein electrophoresis to break down which components of my protein were high. Those results showed an M-spike, which was high enough to cause concern for cancer, specifically multiple myeloma. I was 26 years old.

We went to oncology who told me it was definitely multiple myeloma, before even repeating the test. She put me through an excruciating bone marrow biopsy (four in fact). It took three weeks to get the results back, just me sitting around the house thinking I was dying from cancer. Lo and behold, the bone marrow biopsy was completely normal.

I was then seen by six specialists and follow up’s with oncology to repeat the protein electrophoresis on a monthly basis. Rheumatology said I was clear.

Six months later I began working at UCLA and my oncologist there immediately referred me to rheumatology. Luckily, I was able to get the lead professor of the department, who tested me for more detailed antibody and inflammatory markers. GUESS WHOSE NUMBERS WERE OFF THE CHARTS!

I was then diagnosed with primary Sjögren’s Syndrome and started on many medications to try to get my inflammation down.

Since then, it has been a big roller coaster. Good and bad, highs and lows. Anyone with a chronic illness will understand that.

One of my biggest issues is just fatigue. I have an extremely stressful job, working with patients suffering from neurodegenerative diseases, a job I love but I know takes its toll on me mentally and physically. Some days I’m able to do a light workout and others I get home and just collapse, not even able to keep my eyes open!

Exercise does help; however, I highly recommend it on the good days. I think you will get so in tune with your body and you’ll learn to know when you can or can’t do something.

My biggest advice is to be your own health advocate, HOWEVER, as a scientist I really want to educate people to not believe everything you read. Research on autoimmune diseases is rapidly growing, but there are so many “protocols” that have absolutely no scientific evidence. I urge people to critically analyze what you are reading before doing anything. Also, as a general rule of thumb, if it’s a new protocol or theory that requires you to purchase something for it to work… RUN!

I am happy to help others learn how to analyze research from a scientific standpoint. Just reach out.

Cure Sjogren's

All my love to all the warriors out there!

1 thought on “Big Roller Coaster since Sjögren’s Diagnosis, by Rachel Nicole”

  1. You’ve certainly been through the wringer with all the specialists and tests, but I’m glad they figured out the Sjorgrens when they did so they could get you on a better path with treatment. I don’t know why detailed antibodies and inflammatory marker studies aren’t done more often, they really should be. Thank you for sharing some of your story  ♥ I’ll check out your insta now, Rachel!
    Caz xx


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