I’ve been chronically ill with no official diagnosis since February 6th, 2017. Yes, I remember the date. Because on that day, my life changed forever. This is my story.
Battling never-ending symptoms
It started with chronic nausea, brain fog, skin sensitivity, fatigue and the inability to sit without extreme discomfort in my abdomen.
Every day, the list grew longer – and continues to do so. On bad days, I also suffer from hypersensitive hearing, pain in my muscles, joints, abdomen and lower chest and bloating. In addition, I have trouble focusing my eyes, and I get occasional headaches.
My joints frequently sprain, strain and subluxate (partially dislocate). This makes it hard to walk or even stand without my legs giving out on me. If I use my limbs too much, they become extremely weak, confining me to a wheelchair whenever I go out.
Blood pools in my feet and legs if I stand up, especially if it’s hot or in the shower. When this happens, I have to sit down to get rid of these sensations, because if I don’t, I risk fainting.
Facing a revolving door of doctors and hospitals
When my symptoms began, I consulted a rotation of health care specialists for a diagnosis. I visited multiple primary care doctors, 2 pediatricians, a gastroenterologist, a dermatologist, an autonomic neurologist and a rheumatologist. That’s not to mention all the doctors and neurologists I encountered during various ER visits.
Just before Christmas last year, I checked into the hospital with stroke-like symptoms. I was in emergency care for 4 days. I even rode in an ambulance!
On Christmas Eve, I had an MRI and blood tests – all of which came back clear. Neurologists looked over my symptoms, but even they couldn’t figure out why I was partially paralyzed and couldn’t talk.
My doctors now think I had functional pain, meaning the pain had no organic or physical origin. But that doesn’t mean it was just in my brain; instead, my brain wasn’t sending out the right signals.
After visiting with all these doctors, I’ve noticed the way I speak has changed. I now have a tendency to focus on facts rather than feelings.
My chronic pain has also changed what I want to do when I grow up. Before being chronically ill, I longed to be a police detective. Now I think I want to be a doctor. But being a doctor is stressful and would require a functioning brain! I’m sticking to my music and photography right now.
Attempting holistic treatment
Nutritionists have performed unusual tests to try to diagnose me. For example, one specialist put my hand on a computer mouse to scan my body for damaged or imbalanced areas.
My first nutritionist didn’t help much. The second one also proved to be unhelpful, but she did diagnose me with dysbiosis. This common chronic condition is an imbalance of bacteria in the gut.