Over the years, I have talked about my struggles with my mental health and physical health. Sometimes I feel like maybe people think I am oversharing. At the same time, it doesn’t bother me to share. There is always something we can learn from others and if we are willing to share our experiences, we may just be helping someone else find their own wellness.
For the last two or three years, I have really been trying to become the best version of myself. I have been on my mental health journey and my weightloss journey. Both of those are ongoing issues that ultimately are being held back by other things. I have been trying to get to the bottom of these issues so that I can find my balance in life and find my wellness.
I guess I should explain the issues I have been experiencing. I will just list these things and keep in mind some started when I was in high school, like 15 years ago.
- Chronic fatigue
- “Psoriasis” on my scalp and face
- Chronic neck and shoulder pain
- Chronic lower back pain
- Joint pain
- Numbness and tingling
- Hand tremors
- Muscle spasms daily
- Sensitivity to colder weather in my legs
- Pressure anywhere on my body hurts
- Mood swings
- Difficulty losing weight even when on different diets and regular exercise
- Hearing problems
- Sensitivity to sunlight
- Panic attacks
- Unknown reoccurring nausea
I feel like all of these make me sound crazy, but it is what it is. Crazy or not.
Earlier this year I had to get a new primary doctor. [For some reason, others keep leaving the practice]. I went over all of my health history and was telling him how I wanted answers for all these things that are going on. His reaction was basically, it is probably from being a parent of young kids and your mental health. I have heard it all. Doctor’s telling me I am too young for problems, making it feel like I am in fact the nutjob here.
But, things just never felt normal to me. I shouldn’t have to be struggling this bad for no reason. I began pressing the issue of my chronic back pain. I am tired of it holding me back from many things and making it difficult to really enjoy my life. I had already previously been to a chiropractor, which caused me even more pain. I had previously tried physical therapy, which did not give any relief (including dry needling, cupping, traction, massage, and exercises). I had tried myofascial ball massage. I saw a pain specialist for it once that wanted to inject me with steroids. I wasn’t comfortable with it without knowing WHY IS THERE PAIN in the first place? With my new doctor, I had to ask if he could refer me to a neurologist. I had always wondered if I had nerve damage or something that was causing all this back pain. He was willing to refer me even though getting in during a pandemic would be difficult.
I went to the neurology appointment and he did a physical exam. Off the bat, he knew I had carpal tunnel. [I blame guitar hero]. He decided I needed to get an EMG test done. It took another month and a half to get into there, but I finally got it done last week. The EMG test, if you’re wondering, was basically like being slightly tazed in different areas from my fingers to my elbows. Followed by being jabbed with needles in similar spots from my fingers to my shoulders and being told to move while said needle was in. My hands are still sore from that test.
Meanwhile, a couple months back, I had been watching one of the ladies I follow on YouTube and Instagram. She was discussing her health and being an advocate for herself, leading her to discover she has an autoimmune disorder. She had also mentioned this site called EverlyWell, where you can buy these test at home kits for different things like food sensitivities, allergies, women’s health, and others. I looked into these tests and went ahead and ordered the food sensitivity and women’s health.
At some point during all of this, I went back to read the neurologist’s notes from my first appointment. In those notes he wrote something like “patient most likely has fibromyalgia or another chronic myofascial disorder”. Now, he did not mention any of this to me during the appointment. So of course I start googling Fibromyalgia. I had looked into it several times before and always wondered maybe…
I started talking to my mom about it, so she started researching too. She came across something that said fibromyalgia often times goes hand in hand with Lupus, an autoimmune disorder. Of course I am looking up Lupus and realize, I have most of these symptoms! Including the butterfly rash on my face that I have always thought was psoriasis. Then I started to think, okay, maybe I have Lupus and in order for me to find out I need to get this ANA test for autoimmune disorders. [Which is what I learned about from that influencer I mentioned earlier]. I immediately message my doctor and ask about getting the ANA test. He seemed really wishywashy, but did put the order in in the end.
This last week, after my EMG test, I had my blood drawn for the ANA test. Monday (yesterday) rolled around and I was on my phone messaging a few people. When I finally got a notification that my results were ready. I opened the results and guess what, positive!
Now, they say there is up to a 13% chance of having a false positive, but I am convinced this is where my path is going. So of course, I have to pick apart the rest of the test results which are 3 different things.
- Positive or negative for antinuclear antibodies in the blood (basically yes or no, you do or don’t have an autoimmune disorder, but not specifically which one) mine was positive.
- The number value, or titer as it is listed in the results. A normal range is considered 1:40 to 1:60. Mine was 1:320
- The appearance of the cells. Mine said mixed pattern and speckled.
I read that the titer number I have often times is Lupus. But then, the appearance was a bit more interesting to read about. Most times, a speckled pattern is associated with Lupus. However, a mixed pattern almost always means that disorders are overlapping: meaning, I likely have more than one autoimmune disorder.
I was at least expecting Lupus, but what else could I have based on my symptoms. I came across 2 different ones that I feel I resonate with: Celiac Disease and Multiple Sclerosis.
While I am researching all of these things, waiting for the official word from my doctor, I am feeling a bit overwhelmed of not knowing what is happening. I knew these results would change my life somehow, but to this potential extent I wasn’t thinking about. Finally I got the message from the nurse that I would be referred to a rheumatologist.
I am eager to get to the bottom of all of this, finally getting answers that no one wanted to take seriously before. I know now that I am not just simply crazy! Don’t be afraid to speak up and demand answers! Advocate advocate advocate.
I just want to be better! In the meantime, I am getting off of keto and switching to a gluten free, dairy free, lower carb but not as strict as keto, diet. I feel like I am finally getting somewhere with myself. Even though it will have it’s challenges I am sure, it feels good to finally feel like I am getting somewhere worthwhile.
6 replies to “My Journey To Wellness – Part One”
A couple of years back I had an ANA titer of 1:320. I saw a rheumatologist and he didn’t think I had lupus because my physical symptoms were too vague and non-specific.
LikeLiked by 1 person
Did you eventually get them sorted out?
My doctor just messaged me about the results and wants more blood work done too
LikeLiked by 1 person
After I had the rheumatology consult he ordered a bunch of other tests. When I went back for a follow-up, they said it didn’t show anything new. He thought I might have something autoimmune going on beneath the surface, but it hasn’t progressed enough to be able to figure out what it is. So I’m just monitoring the bloodwork and taking a wait and see approach.
LikeLiked by 1 person
Oh wow, that has to be a bit frustrating.
LikeLiked by 1 person