woman's hands and feet with text overlay - My Big Fat Autoimmune Mess! [Part 2] My Symptoms & Test Results

My Big Fat Autoimmune Mess! My Symptoms & Test Results

Anna Living Well with Autoimmune Disease, My Autoimmune Mess! 22 Comments

This is Part 2 of My Big Fat Autoimmune Mess! series.  The other posts in this series include:

Part 1:  I Traded My Hashimoto’s Disease for A Big Fat Autoimmune Mess!

Part 3:  Why I Stopped Seeking a Diagnosis for My Unspecified Autoimmune Disease?

Part 4:  How I Healed My Leaky Gut (& Finally Reintroduced Foods Without Flaring!)

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.


woman's hands and feet with text overlay - My Big Fat Autoimmune Mess! My Symptoms and Test ResultsBefore 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.

Burning.

Throbbing.

Aching.

Diffusing.

Tingling.

Numbing.

Sharp.

Shooting.

Dull.

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:

Positive ANA Antibodies

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).

Major bummer.

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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woman's hands and feet with text overlay - My Big Fat Autoimmune Mess! My Symptoms and Test Results

Comments 22

  1. Just seeing. Your blog. I have Celiac Disease and lactose and dairy intolerance. I have a busy life. 7 kids, 7 grandkids and my best friend of 45 years and has lived with us all this time now has Dementia. I am her caretaker. I have basically lived on drive thru food and deserts. I have had a steady health decline to the point I am tired just from walking downstairs. I spent last 3 weeks almost totally in bed. Test results blood tests told me what I already knew. This time I have the choice of changing most things or getting worse. You happen to have been first thing I saw today on Pinterest. So here I am. Thank you,

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      Author

      Hi Jacque. Welcome to our blog! Thanks for reading and sharing your story. I can personally relate to your chronic fatigue. I felt that it was impossible to recover but unexpectedly proved myself wrong. It really is never too late to start making changes. Good for you to making the choice to take that first step towards healing! I have no doubt that your body will thank you. 🙂

  2. Hey! First of all, thanks for these two posts. I’ve been in a similar position for just over two years now. I am chasing down symptoms of autoimmune diseases without ever getting a diagnosis. I’ve finally concluded that my body is just attacking my weak points. So now, I focus on recovery and maintenance.
    I’ll be sure to read through the rest of your posts to find more useful tips.

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      Author

      Nick, thanks for reading. We are not alone! I meet more and more people in our same position… we all have a mixed bag of antibodies and symptoms with no diagnosis… but like you said: focus on recovery and maintenance. At least through my personal experience, we can begin to make changes and feel well even without a diagnosis. Thanks for sharing and good luck with your healing!

  3. I just got diagnosed with MMN disease. I started to get IVIG treatments. I’m experiencing fatigue and pain I never felt before. With the treatments I also experienced my WBC dropped. I’m going to hang in there.

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      Ava, I am sorry to hear about your diagnosis. I have heard wonderful things about IVIG treatment and I am considering it for myself. I am sorry to hear that it’s not improving symptoms yet, but I think you have the right mindset to hang in there. You will get through it! Sometimes the healing process makes things worse before they get better. I am praying for you, Ava! Thanks for reading.

  4. So fascinating to read about this part of your journey.
    I was diagnosed with (likely) Lupus in late Fall/early Winter of 2016. I waited for 8 months for a referral appointment with a rheumatologist. My labs on that day showed high levels of inflammatory activity but not necessarily Lupus. I was given a diagnosis of Undifferentiated Connective Tissue Disease.
    While I was waiting for my referral, I mentioned some new, worrisome symptoms to my PCP. She recommended I see a Neurologist. I waited to see what the Rheumatologist would say about these symptoms. She recommended I see a Neurologist as well. I did.
    Three weeks after my UCTD diagnosis, at the age of 45, I was also diagnosed with Parkinson’s Disease. Managing both diseases is challenging to say the least. I turned to blogging as an outlet for my frustration and it has turned into a bit of therapy. I share my journey at: https://www.justshakeitoff.com

    Thank you for sharing your story and allowing some of us to feel less alone.
    – Nikki Louiselle

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      Hi Nikki. Wow. I am sure those two diagnoses were hard to hear. It’s always bittersweet when you finally have some answers, but now have to live with them for the rest of your life. I absolutely love the name of your blog and I am so happy you have found it as a therapeutic outlet… We can totally relate to that, as we feel the same about our blog. Thank you for taking the time to share you story with all of us. As you said, sharing each others’ stories makes us feel less alone. I am praying for you!!

  5. I came across your blog a month ago and have been having a lot of “Ah Ha” moments since doing so. I have not been diagnosed with an Autoimmune disease, but in my soul, I know that it is the source of my problems. On both sides of my family are Autoimmune Issues ranging from Fibromyalgia, Hashimotos, Lupus, Alzheimer’s (not sure if it is classified as AI) and a vast range of food and environmental allergies. I have had issues with Tonsilitis my entire life, which left me with many “Mono” like symptoms. After having my youngest daughter 7 years ago my health has gone down hill and 3 years ago I had a case of recurrent Ebstein Barr Viral infection that has never gone away? It is now being considered Chronically Active Ebstein Barr virus, that feela like I live everyday coming down with the flu/chronically fatigued. Since then I have developed 13 food allergies and 13 food intolerances. I am overwhelmed and feeling frustrated all the time. After many specialists and doctors telling me I am chronically inflammed and maybe Fibromyalgia, I went to a Functional medicine doctor. My doctor put me on countless amounts kf supllements which helped take the edge off in the beginning, but now leave me with severe nausea everyday. After 4 months of nausea I gave them up. I feel a little better, but not. I have made many, many diet modifications, but have not gone totally gluten and dairy free. Like you I thought 90% would suffice. It doesn’t? I go to the Samsun Clinjc in Santa Barbera for another opinion and hope I have a clearer answer. But, like you, I think I know what I need to do. I have read countless hours of research on AIP and know I should. I guess I’m waiting for the actual diagnoses to feel like what I am feeling is real and not just a Virus, even though much research has shown Viruses, Leaky gut, tramatic evens and genetic dispositiin to be 4 key events in developing an AI disease.
    If you have a moment to read my message, any extra motivation would be much appreciated. I’m stuck in a rut.
    Sincerely,
    Elizabeth Colby

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  6. Wow I feel like I was reading my biography. I have changed neurologists 4 times now and 2 rheumatologists. I now drive 130 miles one way to see my neurologist, but I am getting answers. I was told I have CIS MS, and ankylosing spondylitis.

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      Author

      Hi Kris, I am so sorry to hear about your diagnosis – those are two very difficult diseases and I can only imagine how that feels, both physically and emotionally. We also travel far to see the doctors who give us answers. It’s inconvenient but totally worth it. Thanks for reading, Kris! And good luck on your healing journey. We are praying for you.

  7. Thank you for your hopeful outlook and info about the need to keep trying. I have tried a number of times over the years to learn more about diet and even did an elimination diet to attempt to find what gave me problems. I welcome any additional info that might help. I have a very strong family history of autoimmune diseases. My mother has pemphigoid, my sister MS and so many of us have fibromyalgia. I was first diagnosed with the fibromyalgia and chronic fatigue in my mid thirties after falling from a treadmill and badly injuring my SI joint. My fibromyalgia only became worse and I had to start working part time only. I had a near fatal car accident that damaged me in so many ways and left me disabled to the point that I now have few days out of bed and able to do much at all. I hate it so much. I was the driven perfectionist who loved her career, doing things for family and so many activities we did on a regular basis. I have learned great patience and more empathy, so some good has come from this. Gentle hugs and prayers to all those suffering.

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      Author

      Hi Vanessa, I am so sorry to hear about your struggles. I can identify with many of them… I know this is not easy. I think that many of us tend to try changing our diet first, because it is a “low hanging fruit”… or so we think. Sometimes diet can be so complicated and you may need to bring in some help to help you troubleshoot. You may want to consider hiring a certified Autoimmune Protocol diet coach to walk with you while you figure out the diet that works best for you. There is a list of them here: http://aipcertified.com/coach-directory/. In the meantime, you can shift your focus to another area of your life that needs to be addressed. For example, how’s your sleep? Are you exposed to toxins throughout your day in the form of mold, cleaning products, etc.? How about managing your stress? All of these go hand in hand, which is why a completely holistic approach is needed for autoimmune disease. I know you can find the answers you need, Vanessa. We are praying for your recovery!

  8. My friend went through something like this with her daughter (connective tissue disease, pain, vision problems) for YEARS. They thought she was exaggerating or faking but they eventually discovered it was Ehlers Danlos. Her joints were so loose she had her shoulders dislocating. It also effected her vision because her brain was actually sinking into her spine. She had to have brain surgery to correct her vision and it worked. She also has celiac disease. https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndromes

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      Author

      Hi Jessica! Interestingly, I literally just learned about Ehlers Danlos. I’m happy your friend’s daughter finally reached a diagnosis… but it seems like it was a very rough road getting there… a story so many of us can identify with. Thanks for sharing. I hope your comment can help someone else avoid such a long road to a diagnosis.

  9. Hi Anna With all of your auto-immune problems, have you ever heard of or tried LDN?
    It is a very interesting drug that is helping a lot of people.

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      Author

      Hi Judy, yes! I was on LDN about 4 years ago because my thyroid antibodies were so high. It worked great in terms of lowering my antibodies. I go into a little bit more detail in this post. I am considering it as part of my next step if I am not able to turn all these antibodies off, but so far I am feeling pretty good in comparison to when I wrote this post and just received some encouraging test results. It’s a really nice option to have on the back-burner though, especially in comparison to other options of drugs out there for autoimmune disease. Thanks so much for reading and taking the time to comment, Judy!

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      Author
  10. Have you considered the effects of the blood transfusions you received on your immune system? According to NIH, the odds of developing an autoimmune disease go up dramatically after an uncomplicated transfusion. If you reseach blood transfusion autoimmune you may be suprisec at what you find. If you already had autoimmune issues it could make it worse. Hope you find a workable solution.

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      Author

      Hi Jayne, yes… My doctors and I both think that the blood transfusion was the major trigger for this, but of course it would be hard to prove. The good news is that I’ve made a lot of progress since I wrote this post and have hope for a full recovery. Thanks for making this comment, Jayne, as I think we all need to take these types of triggers into consideration, even if some doctors tell us there’s no possible link.

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