Jessica’s Journey To Diagnosis:
Fibromyalgia, Hashimoto’s Autoimmune Thyroiditis, & Celiac Disease
I’m not really sure when my “story” began. Ever since I can remember I have had “issues” of one kind or another. As far back as childhood I had a lot of GI problems, but they were never really addressed or thought of as a problem. Maybe it was “the times” (it was the 80’s and 90’s) or maybe it was a lack of proper medical care. I was born 3 months premature, so it was expected that I was to have “problems.” I’ve always had a curvature of my spine, and since I can remember I’ve had chronic widespread pain. When I was a teenager, the pain would get so bad that I would cry and was unable to walk. I remember crawling around my living room writhing in pain because I simply hurt so badly. At one point I went through testing because the doctors were concerned I had a mild case of Cerebral Palsy. Once CP was ruled out, everything was kind of dropped – or at least not given as much thought.
When I was 18, I was diagnosed a degenerative bilateral knee condition due to poor alignment of the knee joints. By 24 I was diagnosed with fibromyalgia and osteoarthritis of both knees. I was given no real relief from fibromyalgia, and no real answers either. Around this time, I started exhibiting very random and seemingly unrelated medical symptoms. Not only was I in almost constant physical pain (and walking with a cane at this point), but I was exhausted all of the time, my GI symptoms had gotten exponentially worse, I began having gynecological issues, migraines, I was losing my hair, developing skin rashes, having pulmonary issues, having constant infections and ENT problems, and the list goes on… Nothing made sense, but I was almost non-functioning. I was unable to work, unable to have fun, and sunk into a deep depression. My body was falling apart bit by bit.
At this point, I want to say, that I struggled with Anorexia and Bulimia for 12 years (I am since recovered), and at that point in my life, I was concerned I really messed myself and my body up from my eating disorder. At 25, I remember being depressed and sitting on the couch watching a show called “Mystery Diagnosis” – and at that point I decided I was on a mission. I had felt like I was slowly dying, and this show gave me hope to re-claim my life. Hence, enter the plethora of doctors: you name the type of doctor, I saw them! I was spinning in circles with little information from any medical professional. I had diagnostic tests coming out my ears. The results were all negative. Once again I sunk into a deep depression. I had all about given up, when I decided I was the only one that was going to be my own advocate. I spent countless hours on google, read stories of people like me, people with chronic invisible illnesses who saw doctors and were given a pat on the back and sent away without answers and without follow-up.
When I was 26, and working for an individual family, my boss suggested I see her internal medicine doctor. I was exasperated, but willing. Quite honest, I was desperate. I walked into his office with a folder and all of my test results, trackers of my symptoms, and info I had found on google. He spent over an hour going over everything with me, and told me we were going to get to the bottom of this and get me feeling better. He did a physical, felt around on my neck, and grew concerned. “You have nodules on your thyroid and I am concerned, I want to send you for a thyroid ultrasound and some biopsies.” Biopsies? I went from nothing be found to something potentially cancerous being found? I was terrified. I remember going in for the ultrasound just sick with worry. When I was laying on the table, the ultrasound tech said “Hmmm, this is interesting. I need to call the doctor now.” I heard him say something to my doctor about the nodules, something about “enlarged”, and a few other things I cannot recall at this point. It was kind of a blur. The tech got off the phone with my doctor, and they nixed the biopsies and sent me for bloodwork instead. I was beyond frustrated, thinking “here we go again.”
I sat back in my doctor’s office and he said “Jessica, I think I know what’s wrong with you, we have to wait for the bloodwork to come back, but between what the thyroid ultrasound showed, your GI symptoms, and other symptoms, we may just get some answers.” I was elated, but scared to be too elated. My bloodwork came back 3 days later and I returned to my doctor’s office for the results. “You have Hashimoto’s Autoimmune Thyroiditis and your Celiac Panel came back positive.” Um, excuse me? “What in the world is THAT?” I thought. According to my doctor, and the further research I did, Hashimoto’s Autoimmune Thyroiditis is extremely common in people who have Celiac Disease, and fibromyalgia is common in people who have Hashimoto’s Thyroiditis and/or Celiac. Voila, I had my answers! After years of pain and suffering, it was over by taking a few pills a day to manage my thyroid and the fibromyalgia, and adhering to a gluten free diet for the rest of my life. I can’t help but to wonder WHY it took so many doctors and so long to figure all of this out. It hasn’t been easy, or without trials and tribulations, since my diagnosis. I’ve had ups and downs with symptoms, pain flares, GI flares, etc., but it DOES NOT compare to how my life used to be prior to diagnosis and treatment. I am grateful for that, and grateful to finally have my life back. Today I am pretty high functioning, I’m working as a chemical dependency counselor, and am married. No doubt my mystery diagnosis really messed with my life for a long time, but it also shaped my journey. For that I am grateful.