If you’ve made it to this site, you probably know that I have lupus. For those who have lupus (or any autoimmune disease), you know that we all have a story that, for most of us, involves a long road of misdiagnoses or being told there’s nothing wrong with us. For those who don’t have lupus, here’s a glimpse into my road to diagnosis.
It takes an average of six years for patients with lupus get the correct diagnosis. Years of pain, fatigue, confusion, made to think you’re crazy. For me, it was a path that lasted 10 years.
Undergrad (2006-2010) – joint pain
I first noticed symptoms of joint pain when I went to college in 2006. It was a stressful time for me, the first time I had been away from home, taking pre-med, not taking care of myself. I developed knee pain. I attributed it to running in the mountains or perhaps the extra weight I had put on. I saw my family doctor (we’ll call them Dr. Z) and they ordered an MRI but my knees appeared normal. I didn’t understand why they would swell up and hurt whenever I tried to exercise.
Nursing school (2011-2013) – IBS, joint pain, depression
Right after undergrad, I had a traumatic event in my life then started nursing school, then my grandfather got cancer and I helped in caring for him when he died at home. It was a stressful few years.
I started having GI symptoms: abdominal pain, bloating, constipation, diarrhea. Back to Dr. Z, I went and they diagnosed me with irritable bowel syndrome (IBS). Over the next few years, I had multiple visits to Dr. Z. Wrist pain, elbow pain, knee pain. It seemed each month I had a new brace to wear but the pain would seemingly magically get better.
Dr. Z made comments about me having so many complaints. “You’re young, you shouldn’t have all of these problems,” they would tell me. They told my mom that I was a hypochondriac. So I was embarrassed to bring things up. They diagnosed me with generalized anxiety disorder but I felt that I wasn’t anxious at all. These were legitimate complaints.
I’m sure my family got frustrated hearing them also because it seemed there was no end to my problems and they came and went so much that I’m sure it appeared like I was over exaggerating them. How could my knee hurt so badly that I could barely walk one week and be totally fine the next?
About that time came the depression. I attributed it to my traumatic personal event and being involved with my grandfather’s care as he died from cancer. I terrified myself when I had a very clear suicidal ideation while watching TV. It was a car commercial where the car was whipping around mountainous roads. I thought to myself, “that would be an easy way to kill myself. I have mountain roads just up the street.” I knew enough from my nursing training to know that I had ideation of killing myself, a plan, and the means to carry it out. I was scared. (It took several years before I would let myself drive in the mountains alone.) It was at this point that I knew I needed help. Back to Dr. Z, I went. Having depression was shameful enough for me, having to take medication for depression was even worse. I felt like I had failed my family who had given me everything I could ever need but still I wasn’t happy.
Side note: I have mentioned this before in other posts but please, if you are suffering from depression, know that it is not something to be ashamed of. It is a disease process and is very treatable! Please, please, please, get treatment whether its medication, counseling, or lifestyle modification.
Intermission (2013-2015) – fatigue
Due to a possible psoriasis diagnosis (an autoimmune disease that attacks the skin) that never amounted to anything, I had become vegan and gluten-free per Dr. Joel Furhman’s book “Eat to Live.” I was managing my IBS with diet and stress reduction. I was able to wean off my anti-depression medication. I ran a half marathon with no knee pain.
Throughout this time I still felt tired all the time and I couldn’t understand why. I also had trouble getting the words I wanted to say to come out of my mouth. I forgot words all the time. I went to a new provider, a family nurse practitioner. They took my fatigue complaint seriously and ran a variety of tests for thyroid and vitamin and mineral deficiency. I was mildly B12 deficient and started a supplement which did help with the difficulty finding words but did not fix the fatigue. All other labs were normal except for one. I had mildly low platelets. My NP decided to keep an eye on them as nothing else seemed out of place.
Graduate school (2015-2017) – plethora of symptoms
I began a nurse practitioner graduate program and my stress increased. (As you’ve probably noticed, stress is a major trigger for me.) Fatigue was one of the major symptoms. I was falling asleep at stop lights, in class, anywhere. Often I would get home and be too tired to get out of my car so I would fall asleep as soon as the parking break went on and sleep for an hour in my driveway.
I had headaches that blurred my vision, lasted for hours, and weren’t touched by my typical pain meds. I developed pain in my chest when I took deep breaths. I never had the typical butterfly rash but my face was red and I developed painful acne.
I also developed brain fog. I had always been a good student so I couldn’t understand why all of a sudden, I couldn’t learn or remember things or think logically through problems.
I’ve written before about my anxiety in my post about my emotional support dog. I had never experienced test anxiety before but it overwhelmed me during this time. Between the anxiety and brain fog, I performed terribly on exams. I did so poorly that semester that I had to withdraw from the class to keep from failing. It was so embarrassing for me. I was so ashamed. I didn’t tell anyone. I made up excuses why my graduation date had changed.
Diagnosis (2016) – the answer
In July of 2016, the cause to all of my symptoms was finally discovered. I was working at a summer camp and noticed that my knees and ankles were very sore in the mornings and my fingers were sore and swollen. I couldn’t perform my morning tasks due to the swelling and pain in my fingers. I saw my NP and she sent out labs. Positive ANA, low platelets, low white blood cells, low C3 and C4 complement levels. Turns out, I had systems lupus erythematosus.
My mom went back to my Dr. Z and told her “you got it wrong, you missed this.”
As a healthcare provider, I don’t want to be hard on other providers, especially primary care who have such a breadth of disease processes to know. But it is a difficult journey to diagnosis.
I also know that many of you have much more difficult and painful journies. While we all might be fighting the same disease but the wolf attacks in many different ways. I stand with you and hope that together we can find ways to live life better.
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