My Story (Part 3): More Pieces to the Puzzle

California1 068

 Need to catch up? Read Part 1 and Part 2 of my story here.  

Although my sacroiliac joint dysfunction is the worst of my physical afflictions, various other pieces complete the puzzle of my chronic pain and general physical suffering.

Since childhood, I have struggled with my health. From middleschool up through college I would go through episodic periods of illness, followed by months or years of seemingly perfect health. As I child, I mostly struggled with severe stomach pain that was eventually diagnosed as gastroparesis. My stomach basically does not digest food as quickly as it should, and for me, this manifested in severe pain and nausea.

I went through bad flares of gastroparesis in middle school, highschool, and college, and several times my diagnosis was confirmed through a gastric emptying scan. I think my doctors kept wanting to confirm because gastroparesis is not often found in young individuals unless diabetes is also present, which was not the case for me. During flares I would also struggle with fatigue and general feelings of unwellness, like I was constantly sick with a cold or flu. My GI specialist in college was extremely thorough, and he sent out for a variety of blood tests, including several autoimmune markers. This is the first time my blood work came back with an elevated ANA, which can indicate an autoimmune disease such as lupus. At the time, I was not having any associated symptoms besides my gastroparesis and fatigue, and all my other blood work came back normal, so my doctor concluded that I was a part of the small percentage of the healthy population who has this marker.

After a bad flare my junior year of college, I went for over a year and a half feeling in perfect health. Then out of nowhere, one day I became violently ill. I do not feel like going into all the gory details of this illness at the moment, because it brings back a lot of bad memories. But for about three years I was physically unable to hold down a job, live on my own, or barely function. This illness was never diagnosed, and it was only over a long period of time that I slowly began to feel more and more normal over the course of several years. During this time, the only clinical sign of anything wrong with my body was an off-the-charts elevated ANA; my ANA was tested several times, and a clear pattern was present in that the sicker I felt, the higher my ANA blood work came back. However, because this was the only blood test that came back positive, no diagnosis was made.

It was towards the end of this illness that my chiropractic injury occurred, and I sometimes wonder if my inability to heal from this injury is related to an underlying, undiagnosed autoimmune condition. Currently, my body has difficulty healing from other injuries as well, including a minor strain to my wrist that has persisted over the past few years.

My gastroparesis is fairly under control at present, as long as I follow certain dietary restrictions such as eating small meals and avoiding certain foods. At one point I completed an elimination diet, and I my stomach has felt remarkably better since cutting out wheat and eating a mostly plant-based diet. But, more on my diet later.

Right now, I am trying to piece together the puzzle of my symptoms. When new symptoms appear, I am constantly trying to figure out where they fit in the large-scale picture of my SIJD, gastroparesis, and possible autoimmune struggles. When I go to the doctor, every symptom is treated as a separate issue, and I keep thinking there must be some explanation that would make sense of everything at the same time. Unfortunately, I am absolutely terrible at puzzles in general, and this one is no exception.

Of course I want all of my symptoms to fit together into a nice, well-explained package, but I know that is not realistic. For now, I am still taking thing one day and one step at a time.

9 responses

  1. It has taken me many years as well. It can be so hard not having a name for your condition. In my case, it kind of became harder once I DID have a name, because it was the disease that, if I had to choose, was on the BOTTOM of my list of “choices”. But God saw fit to allow it in my life. And I have been able to receive treatment – better late than never.

    Sometimes when you get one diagnosis it’s easier to look for common comorbidities related to that primary diagnosis. I definitely am a problem-solver, which has helped. My doctors usually run out of ideas before I do. 🙂

    I hope you can get answers – the kind you’re hoping for (curable/manageable) – so that you can get better treatment. And more years of remission.

    Keep truckin’!

    Gutsy Girl

    • Thank you for your encouragement! In many ways not having a diagnosis has been extremely difficult, but on the other hand, I do not want many of the potential diagnoses at all! At present I have made my peace with being in “limbo” diagnoses-wise, but then when I have a flare up of symptoms I, of course, want answers.

  2. Yeah, pain is motivating, isn’t it? 😛 That’s what ultimately pushed me – flare-ups – to deciding I couldn’t take the limbo anymore. Every person is different as long as we try to take care of these “temples” God has given us, I think there’s no right/wrong in how to deal with it in terms of seeking/not seeking diagnoses. <3

  3. It’s a horrendous place to be, ill but not knowing what it is. I was there for 3 years and finally discovered what it was earlier this year when I became paralysed. Getting a diagnosis is a strange and sometimes heartbreaking relief… knowing your enemy certainly has it’s benefits though. I wish you easy, comfy, happy days ahead.

    Helen.

  4. Though I battle different illnesses then you, I can relate to many parts of your story. I began experiencing chronic pain around age six and was always sick with ‘common’ childhood illness. It would take me much longer to recover then other children. I also had (And still have) abdominal issues and intense pain.
    Being undiagnosed is extremely frustrating. I am so sorry that you endured so much pain and that it disrupted your life. It is crazy that despite having a positive ANA no one made a diagnosis. It completely blows my mind. Autoimmune disorders are difficult to diagnosis and are misunderstood frequently. It is wonderful that the gastroparesis is under control overall.
    Ah, yes being told you are too complicated, a medical mess, and a mystery (If I had a dollar for every time I heard those phrases!) My case is extremely complex. Many doctors don’t like when you’re different because it requires more work. It took me 10 years to receive a correct diagnosis for my major illness which is SLE (Lupus). My mother has helped me so much through this journey. We have leaned you need to speak up for yourself, ask questions, and do your own research. Someone mentioned Lupus to me. Then I contacted the Lupus foundation. After mentioning it to a few doctors they realized that’s what I have. Being educated about what you have or might have makes a difference. I hope you have received more and answers sense this was posted. Let me know if you need any tips on getting diagnosed or if there is anything else I can do for you. Sending prayers, hugs, and spoons <3

    • Hi thanks for stopping by 🙂 I am sorry you are able to relate to my story. That is a long time to search for a diagnosis. I am thankful that you were able to figure out what is going. Thanks for your thoughts and advice – I do believe you are right about stepping up and taking charge of your own health and research.

      It is a day to day journey, and no further answers yet. But, I am also becoming more adept at managing everything. So nice to meet you 🙂

      • It is difficult to walk this path but I am grateful daily for knowing what illnesses I have. Being chronically ill gives me a different perspective on life and helps me to cherish all the wonderful moments in my life. Np at all. I hope you will get more answers soon <3 I know it can be frustrating. You have everything you need to get though every moment. You are so much stronger then you know. It's lovely to meet you as well!

Leave a Reply