I’d like to take some time on this blog to share awareness about Autoimmune Diseases. Autoimmune Diseases (AI) include Rheumatoid Arthritis, Lupus, Celiac Disease, Sjogrens Syndrome, Polymocitis or Polymyalgia Rheumatica, Multiple Sclerosis, Type 1 Diabetes, Alopecia Areata, Vasculitis and Temporal Arteritis and many others. Each one of these chronic lifelong diseases manifests in different ways in the body but a hallmark of all AI Disease is inflammation; the body is basically over-reacting to something in the body.
Some of the basic blood tests that are often used to diagnosis AI diseases are Inflammation Markers such as CRP, ESR, ANA, ANA tighters and Sed Rate. Other tests that are used in diagnosing AI diseases include the Immune System Compliment tests, C3 and C4 and various disease specific marker blood and radiological tests. Some folks live with symptoms with normal blood work for years while others have abnormal blood work but with no definitive diagnosis. This happens because AI diseases play hide and seek. They can move between active and dormant especially in the early stages before the disease is fully matured.
Let’s use me as an example. Six years ago I was diagnosed with Celiac Disease. I went gluten free. While some of my biggest issues improved and cleared up, over the last six years I’ve had intermittent symptoms that last a few weeks or a few months at times; and then they disappears. I’ve had abnormal blood tests with elevated inflammation markers for three or four months at time then it normalizes. It can damn well make you think you’re a hypochondriac or that you are going crazy. For me the craziness thing over the last five years has been the fatigue. I mean stop in your tracks and go to bed fatigue and sleepiness. I’ve been known to sleep 36 out of 48 hours. That’s not normal but I guess that’s how my body repairs.
The last round of AI flare up started for me around the beginning of the year with fatigue which I pushed through. That was my biggest mistake. This was the time I needed to surrender and just rest. I probably could have prevented the full blast flare up if I just rested for a few weeks. But, I pushed through and by April I was in flare up without realizing that’s what was happening. One by one my inflammation markers starting returning abnormal readings which confirmed I was in a flare. The doctor started piecing together my markers and symptoms which all lead to the diagnosis that Sjogren’s Syndrome is now riding along with my Celiac Disease and perhaps has been in my body sliding between active and dormant for a long time. I can trace back my first round of dry eye/eye infections, dry mouth and joint pain flare up back in 2013 between April and July.
Knowing that controlling inflammation is the key to controlling an AI disease, I have been focusing on dietary changes, supplements and lifestyle changes that will lower inflammation and low the stress response hormones in my body for the last month. I will say the dry eyes are definitely improving. My dry mouth is not completely better but not as horrible. I no longer have as much joint/muscle pain. I am seeing an improvement in my energy level. It is still not great but I am not completely exhausted. So, I am not feeling great or my normal yet but I do see some improvements.
After spending some time in the Facebook closed group for Sjogren’s, I see so many folks there have spent years trying to get diagnosed or have been experiencing the same issues as me. Often finding blood work was not an accurate diagnostic tool. It often has false negatives. As for me, my blood work started to normalize last week. My doctor told me the normal blood work could just be a reflection of me eating anti-inflammatory foods, using Turmeric and Salmon oil to reduce inflammation. I am actually reducing the markers naturally with my dietary and lifestyle approaches. Lowering inflammation may eventually push the AI into remission and end the flare up.
As for me, I have people in my life who love me and want to understand what I am experiencing. My best friend asked me like a million questions last night and I was happy to answer them. What many don’t understand it’s very difficult to have so many symptoms intermittently for such a long time and no answers. If you think my story is complicated, you should hear some of the stories in the Sjogren’s support group forums. I have it easy compared to some of them. Also, focusing on reducing inflammation in the body is a target I can aim for at least. I can focus on that! That will help me feel like I have some control in a situation that was depressing me because I had no answers and no control.
The funny thing is everyone keeps telling me how great I look because I am tan and I dropped a few pounds from being sick. It makes me laugh and it makes me sad at the same time. People with AI diseases are often not taken seriously because you can’t look at them and tell their sick. But they still can’t get out of bed. I just wanted to share some information so people understand you can’t judge nor estimate someone’s health by their appearance. Things aren’t always what they seem. I prefer to put on makeup and get dressed for work because it makes me feel good even when I don’t physically feel great.
For me, controlling inflammation is key and is the reason I am doing the Whole30. I am on Day 9🙌👍
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