This is Part 2 of My Big Fat Autoimmune Mess! series. The other posts in this series include:
Disclaimer: I am not a doctor and this is not medical advice. The information in this post cannot be used to treat or diagnose any disease.
Before every family chiropractor appointment we need to fill out (in great detail) which areas of our bodies hurt and how.
It’s amazing because there are literally SO many adjectives you can use to describe pain. You are forced to really dig deep and think about it.
I know I’m missing some…
So, when the pain randomly started in my feet and calves one day, I described it as: aching & dull. I didn’t think much about it really… just figured it was a result of continuously holding and wearing my newborn.
But when the pain spread to my entire body, and could literally be described by every single adjective listed (all at once), I realized that this probably wasn’t an injury.
Weeks after developing this mysterious pain, I called up my functional medicine doctor and said, “Four months post-partum, hemorrhaged during delivery, two blood transfusions and LOTS of random meds (to save my life): test what you think we need to test.”
Apparently, this signaled for the testing of my antinuclear (ANA) antibodies, which have always been negative… until now:
High ANA Titer
Speckled ANA Pattern
Low White Blood Cell Count
High Anti-DsDNA Antibodies (associated with Lupus)
High Chromatin (Nucleosomal) Antibodies
High RNP Antibodies
Then, another doctor on my team suggested to give the AVISE CTD testing for Lupus/Mixed Connective Tissue Disease a whirl, just to confirm a possible Lupus Diagnosis, and that testing revealed additional results of:
High Anti-Scl-70 Antibodies (associated with Scleroderma)
High Anti-Carbamylated Protein Antibodies (associated with Rheumatoid Arthritis)
High Anti-Cardiolipin IgG Antibodies (associated with Antiphospholipid Syndrome)
My levels according to the laboratory were either high or in the “indeterminate” range, perhaps indicating I was somewhere between the pre-clinical stage and full-blown autoimmune disease. This makes sense, given that my symptoms had just started (my Hashimoto’s Disease began the same way).
Once I saw the blood results and discussed them with my doctor, it clicked. The chronic, widespread pain I had been experiencing was a symptom of something much deeper than I expected:
LUPUS. Or… maybe Systemic Scleroderma? Rheumatoid Arthritis? Some sort of Mixed Connective Tissue Disease?
Who really knows, right? We might not have an official name for it, but I know one thing’s for sure:
I am definitely on the autoimmune spectrum, and could potentially climb my way to a much more serious situation (possible organ failure and/or death) if I am not careful.
Once I saw those test results, I suddenly saw the signs I missed from the start.
For months, I battled traveling eczema, meaning it didn’t really stay in the same spot.
First, it was on back of my hands and fingers, then it migrated to the front of my hands… burning in painful kind-of circular patterns. Lupus Discoid Rash (this picture is almost exactly what it looked like).
I also experienced random chills and sharp shooting pains up and down my limbs, into the base of my neck… they seemed to be correlated with a higher level of pain. If my general pain scale that day was a 10 out of 10, then I got chills.
And of course, everyone’s fav: brain fog and chronic fatigue. Because what autoimmune disease would be complete without a daily dose of discombobulation and pure exhaustion?
Thankfully, this is where the list stopped before I intervened.
I want to dig a bit deeper into my rashes and pain situation, though, because autoimmune disease can present itself in many different forms. You often hear that no two cases are alike.
While I may not have an official name for whatever this is, I definitely experienced ailments associated with the typical symptoms of Lupus (SLE), Rheumatoid Arthritis, and Scleroderma. This is not surprising, given my test results.
There is a signature rash of Lupus called the “Malar” or butterfly rash that spreads across the cheeks and nose… but I didn’t really have it on a daily basis. Occasionally, (on really bad days when I was in a ton of pain or under a lot of stress), I saw just the tiniest hint of the rash developing… which some people mistake for a healthy “glow.”
In fact, I even had one person say “Lupus (or whatever) looks good on you!”
But the rash on my hands… oh my goodness. So painful, BURNING, dry bumps, and cracks. I avoided taking a shower for days (don’t judge) just because of the irritation from the water and soap.
Even now, after months of clear skin, I still have some sort of PTSD from this symptom and find myself wincing every time I go to wash my hands.
CONSTANT pain. Pain of all forms in all places from sun-up to sun-down.
It started with muscles and tendons first and then moved to my joints (mainly my hands, fingers, toes, and ankles). Thankfully, it seemed each day was either one or the other, so if my muscles hurt, my joints didn’t.
The muscle pain is really difficult to describe though. Burning, dull, achey is the best I’ve got. It makes me want constant massages in my calves, feet, hands, and arms. The pressure helps to relieve the pain. Sometimes I went over to my parents’ house just to use their foot and calf massager (which is a really great invention for times like these).
The pain in my joints felt like they were just sore and bruised… similar to how they used to feel when I jammed my fingers playing basketball.
While I felt brain fog and exhaustion was expected as a new mom, the constant pain and skin issues were enough motivation for me to find answers fast. Thankfully, I did reverse them and I go into detail on how I did that in the other blog posts in this series, but… along the way, new symptoms popped up that weren’t evident before.
Anxiety. Digestive issues. Sleep issues. And more. Almost as if once I healed one layer of symptoms, another popped up until I finally figured it all out. If you want to read about my journey in greater detail which ended with an unexpected surprise, click below to read the next post in this series:
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Hi! I’m Anna, co-founder of Healthy Habits Reset. After managing my own autoimmune diseases using lifestyle, habit, and mindset changes, I now work to teach others how to navigate the treacherous and confusing journey of chronic illness living. I firmly believe YOU hold the power to question, think critically, and become your own rock-solid advocate in a world full of unhealthy habits. Consider me, and my husband, Frank, your autoimmune disease health coaches. Are you ready?!