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 had been missing from the start.
For months, I was battling traveling eczema (a term I made up… I don’t think traveling eczema is an official medical condition), 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).
Some days, I experienced tremors in my hands and weakness in my arms, most noticeable when I was conveniently using sharp things, like knives to cut vegetables. (I eventually found this was a result of a Magnesium deficiency. It went away within a day of proper supplementation.)
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 these symptoms, 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 my condition, I definitely experience ailments associated with the typical symptoms of Lupus (SLE), Rheumatoid Arthritis, and Scleroderma. This is not surprising, given my test results.
Let’s start with the rashes.
There is a signature rash of Lupus called the “Malar” or butterfly rash that spreads across the cheeks and nose… but I don’t really have this on a daily basis. Occasionally, (on really bad days when I am in a ton of pain or under a lot of stress), I will see just the tiniest hint of the rash developing… which some people mistake for a healthy “glow.”
In fact, I’ve even had one person say “Lupus (or whatever) looks good on you!” I guess I’m okay with that… just as long as it doesn’t get worse.
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.
And the PAIN!
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 that 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 head over to my parents’ house just to use their foot and calf massager (which is a really great invention for times like these).
I went without joint pain for a few months and thought I was in the clear, but it did make its appearance. That pain felt like my joints were sore and bruised, like I jammed my finger playing basketball.
And finally, my symptoms that disappeared.
What’s so interesting about this whole thing is that I tested positive for all these antibodies at the exact same time my Hashimoto’s Disease is the closest it’s EVER been to remission (in terms of antibody levels). And my thyroid antibodies continue to stay super low, even after months and months! (You can read more about how I keep my thyroid antibodies from increasing here.)
Despite my new symptoms of rashes and pain, I hardly experience any of my Hashimoto’s symptoms… and I had a LOT!
Even more interesting… since the day I found out about my initial Lupus-type indicators, I have been able to cut my thyroid medication in half.
This is all strange to me – to feel so much better but then to experience a brand-new set of symptoms (along with a new form of autoimmune disease).
But you know what? I am making awesome progress. Currently, I am drug-free (except for a small dose of thyroid hormone medication), and plan to stay that way.
Through the use of a healing diet and targeted supplementation, I’ve been able to eliminate the majority of my symptoms, except for occasional days of pain and chronic fatigue which I am currently battling on a daily basis. Thankfully, the fatigue is nowhere near as bad as the exhaustion of my early Hashimoto’s years, but it’s still a major obstacle, especially as a mom to 2 toddlers.
Even with my progress, I know I still have more healing to do. My antibodies are still high, and I am so sensitive to any sort of stress. If I miss a good night’s sleep, eat an inflammatory food (I’m talking like the smallest crumb), or even have the slightest bit of anxiety… I seem to go right into a flare for a few days.
If things really go haywire all of a sudden, I have a few strategies on the back burner to hopefully settle things down until we can figure out my root cause(s) for all of this!
With the knowledge of functional medicine under my belt and a team of great functional medicine doctors whose confidence is contagious, I know God is leading me in the right direction. I just have to keep fighting until we figure out all the pieces to this crazy autoimmune puzzle.
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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?!