- CASE FILE
Life-altering fatigue and pain exacerbated by activity, negative Rheum and Lyme, diagnosed Fibromyalgia, Endometriosis, and PCOS.
ABOUT THIS CASE FILE
October 2014 is the first time I can remember feeling abnormally exhausted. I was at a college football game, and by half-time I couldn’t stand to cheer any longer. The following February I made a trip to the emergency room because I was experiencing horrific body aches, nausea and frequent vomiting, headache, tingling and numbness in my arms, and severe fatigue. I was given fluids and sent home to follow up with my PCP. My PCP tested for Celiac disease and H Pylori, and checked my glucose, A1C, Vitamin B12, Vitamin D, and Complete Blood Count. I was negative for Celiac and H Pylori, had normal glucose and A1C, normal B12, low Vitamin D, and a high white blood count. I was back in the emergency room with worsening symptoms within a couple of days. The vomiting was stabilized with a heavy IV dose of Phenergan, but the fatigue left me bed-ridden for days.
The next year I visited Gastroenterology, Infectious Disease, Endocrinology, Neurology, and Rheumatology (I was with Kaiser at the time). I had a myriad of blood tests, a pelvic/abdominal CT, and a brain/cervical spine MRI. Infectious diseases, diabetes, brain tumor, inflammatory bowel disease (although I do have IBS), Thyroid disease, and rheumatological disorders such as RA and Lupus were ruled out. On basis of exclusion, the Rheumatologist diagnosed me with Fibromyalgia. This diagnosis was supported by an elevated C-reactive protein and erythrocyte sedimentation rate, as well as a physical exam of trigger points. I was told to exercise and eat a healthy diet to manage my symptoms. After months of suffering, I was somewhat relieved to hear a diagnosis, but also apprehensive that a diagnosis based on “exclusion” could alter my quality of life so drastically.
Many of the doctors that I had seen in 2015 discounted the severity of my symptoms and even suggested that my symptoms were a result of depression. I had one doctor even mention the word hysteria—in 2015, seriously. Depression is a valid and serious condition, however, I knew that my symptoms were not a result of depression. Even living with such frustrating and debilitating symptoms, I was happy, spirited, and thankful for my life.
In 2016 I changed insurance, and I began seeing a wonderful PCP. She checked more thoroughly for Thyroid disease, RA, Lupus, and Lyme. All labs were normal/negative, but she mentioned that these were all things to pay attention to—even if the blood results didn’t support diagnoses now, they may in the future. We’ve continued to monitor my thyroid as well as CRP and ESR (which have remained consistently high). She prescribed Cymbalta to manage my Fibromyalgia, and I experienced some relief of symptoms. While I was certainly not “normal” as I was prior to 2014, I had many good days. I was still going into flares multiple times a year that would take me out of work and put me in the bed. My body also began to struggle fighting off any kind of virus or infection. A simple stomach bug or cold takes weeks to recover from, and in Fall 0f 2016 I contracted a MRSA infection in my throat that took 4 months to recover from.
Still suspicious of a rheumatological disease, I visited a rheumatologist in 2018 for a full workup. At this point I was dealing with a continuation of fatigue, pain, random nausea, headaches, and brain fog/cognitive disruption. I also started noticing a low-grade fever, ulcers on my tongue, and bumps on my neck/chest/arms/legs when I felt really “run-down”. These are the first signs that I am going into a flare. The blood results showed nothing to support rheumatological diseases such as seropositive RA, Lupus, or Sjorgen’s. Based on my clinical symptoms and raised inflammatory markers (CRP and ESR), the rheumatologist was willing to treat me for seronegative RA. I was not settled enough to begin biologic medications due to the lack of this doctor’s confidence in the diagnosis of seronegative RA.
In June of 2019 I was diagnosed with edema of my right optical nerve. This was found during a routine eye exam and confirmed by a neuro-ophthalmologist. I am currently in the process of figuring out what is causing this issue. I am thankful that I am not experiencing vision-related symptoms.
This year has brought an increase in daily fatigue, regular illnesses such as colds, an increase of flares, and a decrease in quality of life. I work part-time, usually only a few hours a day. At the end of each workday, I come home and I have to nap for a couple of hours before I am able to spend time with my husband. I have also had to pull back drastically on the “extras” that I am able to do. This includes spending time with my friends and family. Still, I am so thankful for the things that I am able to enjoy, and the amazing people in my life. My husband and I just made the decision for me to stop working for the foreseeable future so that I can put all energy into figuring this out and establishing routines that will strengthen me so that I have hope of realizing my life goals. I will be leaving a job that I love so that we can, hopefully, start a family.
This past week, I drove more than 6 hours to the Mayo Clinic in Jacksonville, FL. I am so incredibly impressed by the level of care and professionalism I experienced. I met with a Rheumatologist and Ophthalmologist, both of whom looked at me as a whole patient and carefully considered my history. They also consulted with their colleagues, which I ultimately believe will be the key to understanding what is happening. Someone, somewhere will be able to relate to my case and connect the pieces. My hope is that these doctors won’t give up on me until we have something figured out. My blood results are still coming in, but so far my CRP is elevated, ESR is high end of normal (it fluctuates between being high and high normal), Complement C4 is high, total Complement is high end of normal, lupus anticoagulant profile is weakly positive, platelets are high, and I am mildly anemic even though I have supplemented Iron periodically over the past few months. The rheumatologists mentioned that they don’t think I have a rheumatological disease, and so far all antibody tests have been within normal limits. I am thankful that even though I may not have a disease that they normally treat, they are still looking into why my inflammatory markers have been elevated for the past 4 years.
I should mention that my hormones are also bonkers. I have suffered with debilitating menorrhagia and dysmenorrhea for many years. I have been diagnosed with both PCOS and Endometriosis through laparoscopy.
I think it’s important to end my story with my goals for reaching a diagnosis. My first goal is to restore quality of life through the appropriate therapies and management. Secondly, my heart’s desire is to get pregnant, sustain a healthy pregnancy, and be present as a mother and wife once my children are here on this earth. I also have personal fitness goals—I am an avid outdoorsman and I want energy to re-condition my body (I’m plus-size) for hiking and competing in running events. Finally, I finished a M. Ed. in Adult Education this past year with a goal to serve veterans of the US Armed forces as they transition to civilian life. I have work to do, and my hope is that I will be able to heal my body and manage whatever processes are currently depleting my strength to an extent that I can reach these goals. I believe that with the right minds to unlock my mystery, along with my willingness to keep pushing, this can all happen!